Jean Elizabeth Glass
         JEGLASS@MAILHOST.TCS.TULANE.EDU
          "Imagination is more important than knowledge."  --Einstein


> Subject: America:  Living with AIDS
> 
>       Executive Summary  
> 
>       The people of the United States have arrived at a crossroads in the
> history of the HIV epidemic.  In the months to come they must either engage
> seriously the issues and needs posed by this deadly disease or face
> relentless, expanding tragedy in the decades ahead.  In just ten years the
> human immunodeficiency virus (HIV), the causative agent of AIDS, has claimed
> more American lives than did the Korean and Vietnam wars combined.  If, from
> this day forward, there were never another instance of new infection, the
> upcoming decade would still certainly be much worse.  The amount of human
> suffering and number of deaths will be much greater. 
> 
>       The face of AIDS will change as well;  thus far it has focused its
> devastation predominantly on young men.  In addition, it is also a disease
> that affects an entire family_now, all too often, mothers, fathers, and
> children die swiftly, one following the other, leaving a few orphans as a
> grim reminder of what was once a family.   Workers on the front lines are
> struggling heroically to cope with illness and death, but their tools have
> been too few, their resources too constrained, and their logistics too
> crippled by the sabotage of disbelief, prejudice, ignorance, and fear. Nor
> has the virus followed rules of fair play.  Gay and bisexual men still bear
> much of the burden of HIV disease.  
> 
>       Disproportionately and increasingly the epidemic has attacked segments
> of society already at a disadvantage_communities of color, women and men
> grappling with poverty and drug use, and adolescents who have not been
> effectively warned of this new risk to their futures.  And with these shifts
> have come new anger, mistrust, and attempts to assign blame, which have
> drowned out the warnings that should signal the magnitude of the mounting
> crisis.  Sadly, this has permitted too many Americans to detach from the
> fray, to feel the problem is that of others different from themselves, and to
> retreat into resentful indifference.  Diversity, which should be our greatest
> strength as a nation, has for the moment become a weakness, and has
> sanctioned a begrudging and sometimes callous response.  Even the language of
> prevention, which should be tailored to the myriad subcultures and
> ethnicities of people at risk, is constrained in the name of morality,
> withholding potentially lifesaving information and devices in order to avoid
> offending a public presumed to be in agreement with such constraints. 
> 
>       Astonishingly, even our most basic efforts to better understand and
> respond to this new plague have been hampered. Efforts have been made to
> constrain or forbid behavioral re- search;  in the face of the most deadly
> sexually transmitted disease ever to confront humanity, some would prohibit
> even the study of the human behaviors that put our children at risk.  Thus we
> disarm ourselves in the midst of lethal battle. 
> 
>       Worst of all, the country has responded with indifference.  It is as if
> the HIV crisis were a televised portrayal of someone else's troubles.  It has
> even appeared relatively painless; many of the torments are hidden because so
> many people do their suffering and grieving in secret, out of fear of stigma,
> discrimination, or rejection.  But the epidemic will not remain painless much
> longer even for the most indifferent observer;  soon everyone will know
> someone who has died of AIDS.  If we are to honor our fundamental social
> contract with our fellow citizens, with ourselves, and with our children, we
> must somehow develop a sense of urgency.  For there is only a little time
> left to recognize at a deep and fundamental level that the threat of HIV is
> all around us and that we must all join in this battle for the sake of future
> generations.  In order to have any chance of winning, we must first energize
> our nation and transform indifference into informed action. We have used
> arresting language because Americans readily understand the need to mobilize
> rapidly for collective action in response to external threats to life.  AIDS
> is a life-threatening disease of global proportions, and it requires the same
> national resolve and commitment to address it effectively that we exhibit in
> times of war. 
> 
>       But the military analogy does not work well in this crisis.  In war, we
> tend to look for a human enemy to attack, and alas thus far this tendency has
> been all too evident in our response to HIV.  But in confronting AIDS, our
> response must be just the opposite.  Compassion and concern for human
> suffering must direct our efforts.  It is against the virus, not those
> infected, that this war must be waged.  Tragically, to date, too many of us
> have failed to understand this fundamental distinction or acknowledge what a
> massive national effort is needed to contain the epidemic. The sapping of our
> collective strength comes from many directions.  There has been a dominant
> undercurrent of hostility toward many people with HIV disease, as if they are
> somehow to blame.  But no one gets this virus on purpose.  We do not withhold
> compassion from people who suffer from other diseases related to behavior. 
> As President Bush stated in his single speech about AIDS, "Once disease
> strikes we don't blame those who are suffering.  We don't spurn the accident
> victim who didn't wear a seat belt;  we don't reject the cancer patient who
> didn't quit smoking.  We try to love them and care for them and comfort
> them."  We must replace the innocent/guilty mindset with sympathy and care
> for people with HIV disease. 
> 
>       Our nation's leaders have not done well.  In the past decade, the White
> House has rarely broken its silence on the topic of AIDS.  Congress has shown
> leadership in developing critical legislation, but has often failed to
> provide adequate funding for AIDS programs.  Articulate leadership guiding
> Americans toward a proper response to AIDS has been notably absent.  We are
> accustomed to hearing from the "bully pulpit" about national problems and how
> we should address them, so perhaps the public cannot be blamed for assuming
> that such a silence means that nothing important is happening.  Their false
> calm is reinforced by politicians who declare that enough has been done about
> AIDS, since it is "just one disease," and that we should redirect our
> attention to other diseases that currently kill more people. 
> 
>       But we cannot turn away from what is coming, lest we be blind-sided. 
> There are at least one million Americans silently infected with HIV.  Most of
> them will get sick during the next decade.  And in the absence of a national
> effort, the virus continues to spread.  The cumulative deaths of the first
> ten years of AIDS will more than double in the next two:  by the end of 1993,
> the toll will rise from 120,000 to over 350,000.  AIDS is already the leading
> cause of death for young men and women in many parts of the country and is
> climbing relentlessly up the list of causes of "years of potential life
> lost."  
> 
>       What makes these numbers particularly tragic is that there is so much
> that we can do to turn the tide of HIV through prevention of further spread,
> and so much that we must do to provide more humane and compassionate care to
> those who have already been caught in the path of the virus.  But there are
> two destructive attitudes within our borders that hamper these actions.  They
> are a thinly veiled feeling that those who acquire the virus are getting what
> they deserve and a collective indifference to their fate.  As long as these
> attitudes persist there will be reluctance to engage in the effort required
> to surmount HIV disease.  Overcoming these attitudes will require
> leadership_leadership from the highest levels of government and the private
> sector. 
> 
>       To accomplish the tasks that loom ahead, we must, as a society, find a
> way to convert anger, fear, and indifference into informed action.  We must
> deal effectively with discrimination and prejudice, overcome present
> governmental inertia, rededicate ourselves to maintaining a necessary
> intensity of research endeavor, educate the public to replace panic with an
> informed awareness of what is needed to prevent infection, and coordinate our
> resources to meet the urgent health care needs of the sick in cost-efficient
> ways that take full advantage of our powerful science.  We must recognize our
> obligations to future generations in these tasks, for further indifference or
> misdirected efforts spells doom for millions. 
> 
>       For two years, the National Commission on AIDS has pursued its mandate
> from Congress to make recommendations to Congress and the President "for a
> consistent national policy concerning AIDS" and the HIV epidemic.  We have
> held hearings, site visits, and consultations;  we have heard from over one
> thousand voices across the country in direct testimony, voices that have
> described the horror of the HIV tragedy and the heroism of brave men, women,
> and children as they grapple with HIV.  Some have told of their struggle with
> their own illnesses.  Some have told of remarkable commitment to care for and
> about others.  We have been heartened and inspired by the thousands of people
> throughout the land who have selflessly given of themselves to develop
> programs of prevention, care, and advocacy in their communities.  It has been
> a privilege to experience the richness of diversity that could give
> unconquerable strength to our efforts if it were honored and fully harnessed;
> and it has been a source of constant sorrow to witness the accelerating loss
> of talent as young adults die of AIDS in ever increasing numbers. 
> 
>       This report attempts to address a number of the central themes that
> have emerged from this process.  It brings out the fact that, in an important
> sense, the only thing new about our present quandary is the virus, that most
> of what we are experiencing represents old problems that have been poorly
> patched and bandaged or ignored entirely.  The HIV epidemic did not leave 37
> million or more Americans without ways to finance their medical care_but it
> did dramatize their plight.  The HIV epidemic did not cause the problem of
> homelessness_but it has expanded it and made it more visible.  The HIV
> epidemic did not cause collapse of the health care system_but it has
> accelerated the disintegration of our public hospitals and intensified their
> financing problems.  The HIV epidemic did not directly augment problems of
> substance use_but it has made the need for drug treatment for all who request
> it a matter of urgent national priority.  Rural health care, prison health
> care, access to health care for uninsured and underinsured working men and
> women_these issues and many more form the fabric of our concern.  The report
> is not all-encompassing, for we have focused on certain issues that the
> Commission viewed as most important during our first two years of work.   
> 
>       The Introduction, the first chapter, paints an overview of the current
> status of the epidemic in America.  It notes that, in endeavoring to solve
> problems of HIV care in the context of our current epidemic crisis, we can
> develop better ways to manage other chronic relapsing illnesses, innovations
> that will serve society well in the years to come.  By taking away our right
> to procrastinate further, HIV presses us to confront the shortfalls in our
> health care system more honestly. 
> 
>       The second chapter deals with issues of prevention and education.  It
> points out that prevention is currently our only hope of altering the course
> of the HIV epidemic and that efforts in this sector have been grossly
> underutilized_further, that prevention strategies will remain key even after
> the development of effective drugs or vaccines.  It develops the theme that
> frank communication is our best defense for our children against the twin
> epidemics of HIV and drugs.  Elements common to successful programs are
> highlighted, including the importance of cultural sensitivity, cultural
> competence, and community involvement.  Effective progress in the prevention
> of HIV disease associated with illicit drug use is noted.  Finally, a call is
> made for a comprehensive national HIV prevention initiative that would
> integrate federal, state, county, and municipal governments, community-based
> organizations, and affected populations to achieve a common goal of HIV
> prevention. The third chapter discusses how health care for people with HIV
> disease can be improved.  It takes note of the substantial progress that has
> been made in enhancing the quality and extending the duration of lives of
> people with HIV.  It describes who should be involved in the delivery of
> health care and social services to those with HIV disease, the sites where
> care should be available, and how those care services can best be organized. 
> Ideally, such care involves an interdisciplinary group in a continuum of
> services delivered in the least restrictive, least institutional settings at
> the lowest possible costs.  Common elements link counseling and testing with
> primary care in out-of-hospital settings, coordination of that care with the
> hospital, access to investigational drugs and integration of illicit drug use
> treatment with HIV care.  The point is made that existing health care
> providers must be better trained to manage the care of people with HIV
> disease and that future needs for more health care professionals must be
> anticipated.  Finally, continued efforts must be devoted to improving
> communication strategies so that minimal delay occurs between development of
> new therapies and their availability. 
> 
>       The fourth chapter deals directly with the difficult issues of health
> care financing in the context of HIV.  The Commission came to the conclusion
> that systemic reform will be necessary to achieve genuinely appropriate
> access to health care for all Americans.  Only in this way will those with
> HIV disease be assured of needed care.  Thus we have not confined our
> discussion to the arena of HIV disease alone, but have instead discussed
> solutions to problems of financing that are consistent with the broader
> initiatives of health system reform currently under discussion.  However, our
> recommendations are specific to problems of HIV, and thus we offer a series
> of options that could improve the lot of HIV infected people and we cost out
> their implications.  We remain firm in our conviction that these short-term
> measures should give way as quickly as possible to nationwide reform of the
> American health care system, reform that ensures financial access to care for
> all of our citizens. 
> 
>       The fifth chapter focuses on clinical trials and treatment-related
> research.  To date, our deliberations have not focused on the nation's
> vitally important biomedical research enterprise.  Further, we have paused
> only briefly to underscore the manifest importance of social and behavioral
> research in achieving ultimate control of the HIV epidemic.  In this chapter,
> the discussion is directed to currently dynamic issues of clinical trials and
> the search for new therapeutic agents for people with HIV disease.  Problems
> of assuring access to drug trials for diverse populations with HIV disease
> while maintaining orderly studies that will permit sound scientific
> assessment of therapies are considered.  Issues of delivery of care in the
> context of experimental therapy and the use of new drugs in expanded access
> programs are also covered.   In the sixth and final chapter, the
> responsibilities and opportunities for government to intervene and interact
> with other components of society are examined.  It is noted that at all
> levels of government greater leadership is needed.  At the federal level, we
> note that within the U.S. Public Health Service there has been a real effort
> to coordinate responses, but that there is a need for much greater
> cooperation and coordination across many departments at the cabinet level. 
> State and local governmental roles are critical and distinctive.  Of
> particular concern is the current fiscal crisis occurring in many of the
> states with the highest incidence of AIDS.  The need to fully fund the Ryan
> White CARE Act is underscored, and the importance of providing the funding to
> evaluate programs is stressed. 
> 
>       After each chapter the Commission has offered a short series of
> recommendations for action.  They have been purposely kept few with the hope
> that they will all receive careful consideration.  They overlap.  Prevention
> of HIV infection, care and treatment of those with HIV disease, the financing
> of that care, and the research necessary to improve treatment are all
> intimately interwoven and inseparable.   
> 
>       To transform what now obtains into effective action requires
> simultaneous attention to all facets of this epidemic which is now causing
> such pain and loss of life.
> 
>       Recommendations  
> 
>       1.  A comprehensive national HIV plan should be developed with the full
> participation of involved federal agencies and with input from national
> organizations representing various levels of government to identify
> priorities and resources necessary for preventing and treating HIV disease. 
>   
> 
>       2.  Universal health care coverage should be provided for all persons
> living in the United States to ensure access to quality health care services. 
> 
> 
>       3.  The federal government should establish a comprehensive national
> HIV prevention initiative.  
> 
>       4.  Government should assure access to a system of health care for all
> people with HIV disease.  
> 
>       5.  Medicaid should cover all low-income people with HIV disease.  
> 
>       6.  States and/or the federal government should pay the COBRA premiums
> for low-income people with HIV disease who have left their jobs and cannot
> afford to pay the health insurance premium.  
> 
>       7.  Medicaid payment rates for providers should be increased
> sufficiently to ensure adequate participation in the Medicaid program.  
> 
>       8.  Social Security Disability Insurance (SSDI) beneficiaries who are
> disabled and have HIV disease or another serious chronic health condition
> should have the option of purchasing Medicare during the current two-year
> waiting period.    
> 
>       9.  Congress and the Administration should work together to adequately
> raise the Medicaid cap on funds directed to the Commonwealth of Puerto Rico
> to ensure equal access to care and treatment.  
> 
>       10. Policies should be developed now to address future plans for the
> distribution of AIDS vaccines and the ethical and liability issues that will
> arise when vaccines become available.  
> 
>       11. The federal government should fund the Ryan White CARE Act at the
> fully authorized level.  
> 
>       12. Congress should remove the government restrictions that have been
> imposed on the use of funds for certain kinds of HIV education, services, and
> research.  
> 
>       13. The Secretary of Health and Human Services should direct the
> National Institutes of Health, the Health Care Financing Administration, and
> the Health Resources and Services Administration to work together to develop
> a series of recommendations to address the obstacles that keep many people
> from participating in HIV-related clinical trials, as well as the variables
> that force some people to seek participation in trials because they have no
> other health care options.  
> 
>       14. HIV-related services should be expanded to facilities where
> underserved populations receive health care and human services, in part to
> ensure their increased participation in trials of investigational new
> therapies.  
> 
>       15. Current efforts at the National Institutes of Health (NIH) to
> expand the recruitment of underrepresented populations in the AIDS Clinical
> Trials Group should be continued and increased.  
> 
>       16. HIV education and training programs for health care providers
> should be improved and expanded and better methods should be developed to
> disseminate state-of-the-art clinical information about HIV disease, as well
> as drug and alcohol use, to the full range of health care providers.  
> 
>       17. Greater priority and funding should be given to behavioral, social
> science, and health services research.  
> 
>       18. The Food and Drug Administration should aggressively pursue all
> options for permitting the early use of promising new therapies for
> conditions for which there is no standard therapy or for patients who have
> failed or are intolerant of standard therapy.  
> 
>       19. The National Institutes of Health should develop a formal mechanism
> for disseminating state-of-the-art treatment information in an expeditious
> and far-reaching manner.  
> 
>       20. The Department of Health and Human Services should conduct a study
> to determine the policies of third-party payers regarding the payments of
> certain health service costs that are provided as part of an individual's
> participation in clinical trials conducted in the development of HIV-related
> drugs.  
> 
>       21. Implementation of the Americans with Disabilities Act should be
> carefully monitored, and states and localities should evaluate the adequacy
> of existing state and local antidiscrimination laws and ordinances for people
> with disabilities, including people living with HIV disease. 
> 
>       22. The federal government should expand drug abuse treatment so that
> all who apply for treatment can be accepted into treatment programs.  The
> federal government should also continually work to improve the quality and
> effectiveness of drug abuse treatment.  
> 
>       23. Legal barriers to the purchase and possession of injection
> equipment should be removed.  
> 
>       24. The following interim steps to improve access to expensive
> HIV-related drugs should be taken: 
> 
>             (a) adequately reimburse for the purchase of drugs required in
>       the prevention and treatment of HIV disease, including clotting factor
>       for hemophilia;   
> 
>             (b) undertake, through the Department of Health and Human
>       Services, a consolidated purchase and distribution of drugs used in the
>       prevention and treatment of HIV disease;   
> 
>             (c) amend the Orphan Drug Act to set a maximum sales cap for
>       covered drugs.  
> 
>       25. All levels of government should develop comprehensive HIV plans
> that establish priorities, ensure consistent and comprehensive policies, and
> allocate resources.  
> 
>       26. Federal, state, and local governments should join forces with the
> private sector in providing long-term support to community-based
> organizations.  
> 
>       27. The U.S. Public Health Service should expand and promote
> comprehensive programs for technical assistance and capacity building for
> effective long-term prevention efforts.  
> 
>       28. Federal, state, and local entities should provide support for
> training, technical assistance, supervisory staff, and program coordination
> to acknowledge and support the family members, friends, and volunteers who
> are an integral part of the care system of a person with HIV disease.  
> 
>       29. The federal government should develop an evaluation and technical
> assistance component for all federally funded HIV-related programs.  
> 
>       30. Elected officials at all levels of government have the
> responsibility to be leaders in this time of health care crisis and should
> exercise leadership in the HIV epidemic based on sound science and informed
> public health practices.       
> 
>       Chapter 1  
> 
>       Introduction   
> 
>       Since scientists first began to understand the dynamics that govern
> transmission of the human immunodeficiency virus (HIV), it has been possible
> to predict with chilling accuracy the toll the epidemic would exact in
> sickness and in lives lost.  As the nation enters the second decade of the
> HIV epidemic, the accuracy of predictions made in the mid-1980s stand as a
> silent rebuke.  One need take only a brief look at these statistics to
> understand the impact that AIDS has had in the United States.   By the end of
> 1990, more than 100,000 people in the United States had died of AIDS, and
> nearly a third of those deaths occurred that year.  
> 
>       Now more than a hundred people die in the United States every day of
> AIDS_one every 15 minutes_and the pace is accelerating.  As of June 1991,
> 182,834 cases of AIDS in the United States and its commonwealths and
> territories had been reported to the federal Centers for Disease Control
> (CDC).  Between March 1990 and March 1991, the reported number of new cases
> in the United States rose by more than one third.  These numbers are a
> telling indication that our efforts at prevention must be redoubled.    
> 
>       During the earliest years of the epidemic, from 1981 to 1982, nearly 80
> percent of all reported AIDS cases were from six large metropolitan areas in
> five states_New York City, San Francisco, Los Angeles, Miami, Newark, and
> Houston.  So far in 1991, 31 metropolitan areas and 25 states and the
> Commonwealth of Puerto Rico have reported one thousand or more cumulative
> AIDS cases_and the number of communities, counties, and states affected by
> HIV disease continues to expand. 
> 
>       While the majority of new AIDS cases have been from metropolitan areas,
> there has been a significant increase in new cases in municipalities with
> populations less than 500,000.  Lack of access to adequate health care has
> denied the benefits of advances in treatment to many in these smaller cities
> and rural communities, despite the dedication of stalwart health care
> providers and volunteers.  More ominous still, failure to acknowledge the
> dimensions of the crisis has resulted in insufficient attention to AIDS
> education and prevention programs. 
> 
>       HIV disease has had a disproportionate impact on some communities.  The
> HIV epidemic continues to affect gay and bisexual men more than any other
> single group of Americans; these individuals compose 64 percent of the cases
> of AIDS reported since the beginning of the epidemic.  African-Americans
> constitute 12 percent of the United States population, but nearly 28 percent
> of AIDS cases.  Hispanics constitute 9 percent of the population, but 16
> percent of AIDS cases.  Unless sustained support for targeted interventions
> that facilitate access to a broad range of health and social services is
> given, there is every indication that these communities will continue to be
> disproportionately represented among AIDS cases in the future. 
> 
>       The number of women and children infected with HIV_particularly within
> communities of color_continues to grow dramatically.  In fact, AIDS cases
> among women are growing faster than AIDS cases among men.  As of June 1991,
> women accounted for 10 percent of all AIDS cases.  In 1991 AIDS is projected
> to become one of the top five causes of death for young women. 
> 
>       Increasingly, parents who are themselves infected are forced to make
> agonizing choices for themselves, their infected children, and their
> uninfected children.  Parents may sacrifice their own health as they seek
> care for their children and must struggle with issues of how to provide for
> both sick and healthy children after their death.  New York City officials
> project an "orphan burden" of approximately 20,000 children who will need to
> be cared for by relatives or placed in foster homes when their parents die of
> AIDS in the next few years.  About one fourth of these children will be HIV
> positive themselves.  Intravenous drug use has contributed significantly to
> this new trend.  
> 
>       Approximately 70 percent of all pediatric AIDS cases are directly
> related to maternal exposure to HIV through intravenous drug use or sex with
> an intravenous drug user. Communities all across the United States are
> struggling to confront the twin epidemics of HIV and substance use.  The
> nexus between HIV and substance use is unarguable.  Already, approximately 31
> percent of all AIDS cases can be linked, either directly or indirectly, to
> intravenous drug use. Cases of HIV infection related to unprotected sexual
> activity under the influence of crack cocaine, alcohol, or other substances
> is another disturbing trend, especially among adolescents.  Drug treatment
> centers are ill equip- ped to deal with the growing numbers of substance
> users with HIV disease.  The lack of treatment slots, training, and funding
> only perpetuates this insidious link. 
> 
>       The number of reported AIDS cases does not, however, accurately portray
> the scope of the epidemic because such figures represent only 10 to 15
> percent of the total number of people now infected with  HIV in the United
> States.  CDC estimates that, at present, approximately one adult male in 100
> in the United States is HIV positive and one adult female in 600 is similarly
> infected.  In all, CDC estimates that at least one million people in this
> country have HIV infection.   
> 
>       Moreover, HIV affects people of all ages.  Adolescents are often
> forgotten as discussions center on adults and children.  Presently,
> adolescents with hemophilia represent a majority of reported AIDS cases among
> those aged 13_19.  In addition, adolescents practice many of the same
> behaviors that put adults at risk.  Given the length of time between
> infection and diagnosis, it is clear that the large numbers of individuals
> diagnosed with AIDS in their mid to late twenties were infected during their
> teens.  
> 
>       The disproportionate impact of AIDS on young people is further
> dramatized by the "years of potential life lost."  Health economists have
> tallied up the years of potential life lost before age 65 to describe the
> extent to which deaths from AIDS occur primarily in young people.  In 1987
> the years of potential life lost due to AIDS was 432,000.  This figure
> compared with 246,000 for stroke, 1.5 million for heart disease, and 1.8
> million for cancer.  While the rates for these other major diseases remain
> stable, the years of potential life lost due to AIDS continues to increase. 
> In 1991 estimates place the years of potential life lost due to AIDS between
> 1.2 and 1.4 million, ranking it third among all diseases.  By 1992 the years
> of potential life lost due to AIDS will grow to between 1.5 and 2.1 million. 
> By 1993 AIDS will clearly outstrip all other diseases in lost human
> potential. 
> 
>       HIV disease has a devastating impact on those who are already
> marginalized members of society.  Growing numbers of HIV infection and AIDS
> cases occur among poor residents of inner cities.  For the members of the
> National Commission on AIDS, the statistics of HIV disease were brought to
> life by the testimony of nearly one thousand witnesses at hearings and site
> visits across the country.  The Commission met with people living with HIV
> disease and with caregivers on the front lines.  Its members met with people
> at homeless shelters in New York City, at a needle exchange program in
> Seattle, in Native American communities in four states, in private homes in
> rural Georgia, at primary health clinics and drug outreach centers in Puerto
> Rico, at a Veterans Administration hospital in Los Angeles, and at hospitals,
> HIV antibody testing centers, drug treatment clinics, and comprehensive
> hemophilia treatment centers throughout the nation.  
> 
>       A mere tally of cases only sketches part of the picture.  It quickly
> became clear during the Commission's travels that HIV disease could not be
> understood outside the context of racism, homophobia, poverty, and
> unemployment_pervasive factors that foster the spread of the disease.  This
> web of associated social ills has been referred to as "a synergy of plagues." 
> Poverty and unemployment in the inner cities of the United States entail much
> more than an inability to pay the bills.  In 1991 being poor is a generic
> risk factor, for it is associated with in- creased risks of becoming
> homeless, dying a violent death, and suffering and perhaps dying from a
> multitude of preventable illnesses.  
> 
>       A 1990 study of mortality in New York City's Harlem found that black
> men in that community were less likely to reach the age of 65 than were men
> in Bangladesh. The association of poverty, homelessness, and disease is
> perhaps best dramatized by the impact of the HIV epidemic on those in inner
> cities who are living at the margins of society.  Without permanent addresses
> or steady incomes, the homeless and many of America's poor often are isolated
> from all but the most rudimentary health care.  Public hospitals that serve
> low-income communities and the overwhelming majority of people with AIDS in
> large cities are overcrowded, their staffs are beleaguered, and their
> substandard funding is shrinking with each additional municipal budget
> crisis.  
> 
>       Those most in need of health care are typically the ones who can least
> afford it.  When illness strikes, the emergency room becomes the "family
> physician."  The increase in numbers of HIV cases is placing a strain on a
> system already on the verge of collapse. In some areas of the country the
> sheer number of people with AIDS has forced a greater awareness and
> understanding of the challenges people with HIV disease face.  However,
> although recent opinion polls reflect a moderation of harsh attitudes toward
> people living with HIV disease, HIV-related discrimination has not
> disappeared.  This discrimination reflects the racism and homophobia that
> pervade our society and, like poverty, limit people's access to care and
> compassion.  AIDS has been sufficiently controversial to have earned the
> status of the most litigated disease in American history.  There is,
> moreover, a further disquieting trend.  Surveys of court cases and complaints
> to human rights commissions show that rather than disappearing, AIDS
> discrimination is changing.  Subtle prejudices involving denial of basic
> health services are replacing overt forms of bias, and these subtle biases
> are more difficult to fight legally. 
> 
>       As the epidemic worsens, opportunities to mobilize effective responses
> diminish each day that we fail to act decisively.  Education for prevention
> of further HIV spread through the avoidance of risk behavior has been greatly
> underutilized.  Despite a slow start, there is much that can be done now to
> prevent new HIV infections from occurring and to enhance the quality and
> length of life of those already infected.  In recent years there have been
> heartening developments in treatments for HIV disease.   Guaranteeing access
> to all of these treatments is essential.  The Commission has witnessed
> firsthand the efforts of many people, particularly individuals working at the
> community level, who are providing these and other services to people with
> HIV disease.  The nation must be awakened to the enormity of the HIV crisis
> and to the potential for individual and collective action.  There is no lack
> of options or remedies.  We are not without hope. The nation's response must
> be commensurate with the threat posed by the epidemic.  The report that
> follows offers concrete proposals for action.  
> 
>       Selected Bibliography  
> 
>       Angell, M.  1991.  A dual approach to the AIDS epidemic.  New England
> Journal of Medicine 324:1498_1500.  
> 
>       Arno, P.S., D. Shenson, N.F. Siegal, P. Franks, and P.R. Lee.  1989. 
> Economic and policy implications of early intervention in HIV disease. 
> Journal of the American Medical Association 262:1493_1498.  
> 
>       Bayer, R.  1991.  Private Acts, Social Consequences:  AIDS and the
> Politics of Public Health.  New Brunswick, N.J.:  Rutgers University Press. 
> 
> 
>       Bayer, R.  1991.  Public health policy and the AIDS epidemic:  An end
> to AIDS exceptionalism?  New England Journal of Medicine 324:1500_1504.   
> 
>       Beauchamp, D.E.  1988.  The Health of the Republic:  Epidemics,
> Medicine, and Moralism as Challenges to Democracy.  Philadelphia, Pa.: 
> Temple University Press.  
> 
>       Berk, R., ed.  1988.  The Social Impact of AIDS in the U.S.  Cambridge,
> Mass.:  Abt Books.  
> 
>       Brandt, A.  1987.  No Magic Bullet:  A Social History of Venereal
> Diseases in the United States from 1880.  Expanded edition.  New York: 
> Oxford University Press.  
> 
>       Brandt, A.M.  1988.  AIDS and metaphor:  Toward the social meaning of
> epidemic disease.  Social Research 55:413_432.  
> 
>       Burris, S.  1989.  Rationality review and the politics of public
> health.  Villanova Law Review 34:909_932.  
> 
>       Crimp, D., ed.  1988.  AIDS:  Cultural Analysis, Cultural Activism. 
> Cambridge, Mass.:  The MIT Press.  
> 
>       Dalton, H.  1989.  AIDS in blackface.  Daedalus 118:205_227.  
> 
>       Fee, E., and D.M. Fox, eds.  1988.  AIDS:  The Burdens of History. 
> Berkeley, Calif.:  University of California Press.  
> 
>       Gostin, L.O.  1990.  The AIDS litigation project:  A national review of
> courts and human rights decisions.  Part I:  The social impact of AIDS. 
> Journal of the American Medical Association 263:1461_1970.  
> 
>       Institute of Medicine.  1988.  Confronting AIDS:  Update 1988. 
> Washington, D.C.:  National Academy Press.  
> 
>       Institute of Medicine.  1988.  The Future of Public Health. 
> Washington, D.C.:  National Academy Press.    
> 
>       Institute of Medicine.  1991.  HIV Screening of Pregnant Women and
> Newborns.  Washington, D.C.:  National Academy Press.    McCord, C., and H.P.
> Freeman.  1990.  Excess mortality in Harlem.  New England Journal of Medicine
> 322:173_177.  
> 
>       Murphy, T.F.  1991.  No time for an AIDS backlash.  Hastings Center
> Report 21(2):7_11.  
> 
>       Shilts, R.  1988.  And the Band Played On:  Politics, People, and the
> AIDS Epidemic.  New York:  Penguin.  
> 
>       Wallace, R.  1988.  A synergism of plagues:  "Planned shrinkage," 
> contagious housing destruction, and AIDS in the Bronx.  Environmental
> Research 47:1_33.    
> 
>       Introduction  
> 
>       Side bar pull out information:     
> 
>       We must learn to practice the justice, freedoms, and compassions that
> we take so much pride in talking  about in civics classes and teaching our
> children about when we tell them what it is to be an American.  
> 
>       Our  response to AIDS must take into account how all people with AIDS
> and HIV live and recognize that we aren't all in San Francisco or New York
> using systems that are collapsing from the weight of us.  Some of us are in 
> Kentucky and Alabama and Missouri and Iowa, still trying to find a doctor
> willing to treat us or a home care agency that will send the nurse without
> requiring a baseline antibody test for her. . . .  
> 
>       I have to say that people living with AIDS and HIV want nothing more or
> nothing less than what all  of you take for granted today_a place to live,
> the right to have a job, decent medical care, and to live our lives out
> without unreasonable barriers.  
> 
>       We are not asking for extras, only to be included in what America
> already delivers to her privileged people.  
> 
>       I'm thirty-one this year and my life has been blessed with two healthy
> children_a six-year-old daughter, and a son who is almost three.  Relatively
> speaking, I'm not in bad shape and I used to hope that I would be able to
> live long enough to see my children, with the help of their father, accept
> and adapt to the inevitability of my death.  More lately I've been hoping
> that when I'm gone they wouldn't continue to be stigmatized by the shadow
> thrown by my public life.  
> 
>       But compassion is not going to happen because of a report that we make
> or an edict that somebody in Washington delivers.  It will begin in the small
> towns in the quiet country throughout America when people understand that
> people living with AIDS and HIV are just like us because they are us.   
> 
>       Belinda Mason 
>       September 1989       
> 
> 
>       The AIDS/HIV epidemic has focused more attention on long-standing
> problems and has made it clear that it's time for sweeping policy and
> systemic changes in how America cares for its most needy.  
> 
>       Don Schmidt 
>       July 1990    
> 
> 
>       I worry about my daughter who is not infected, but affected by her
> family's situation.  I not only worry about her, but all the siblings that
> are not infected because I think the system tends to forget about these
> children. . . .  If they lose their parents, if they lose their infected
> siblings, the public views these children as now over the trauma.  Well,
> those children's trauma is just beginning.   
> 
>       Toni P.  
>       March 1991     
> 
> 
>       By 1992 the years of potential life lost due to AIDS will grow to
> between 1.5 and 2.1 million.  By 1993 AIDS will clearly outstrip all other
> diseases in lost human potential.   
> 
>       There were no support groups, no social workers, nobody, so I retreated
> even further into my community.  But even that was wrong.  I had people
> coming to my door wanting to beat me up_they didn't want AIDS in their
> community_even though these were my relatives.... But because I had AIDS I
> was no longer human.  I was a disease.  I no longer had feelings.  I no
> longer was given the opportunity to plan, to have goals, to contribute.     
> 
>       Willie Bettelyoun, M.A. 
>       September 1989  
> 
> 
>       Chapter 2   
> 
>       Prevention and Education    
> 
>       Until a cure or a vaccine is found, education and prevention are the
> only hope for altering the course of the HIV epidemic.  This actually
> understates the importance of prevention, for prevention strategies will
> continue to be a key component of HIV containment far beyond the advent of
> successful drug treatments or vaccines.  There are valuable lessons to be
> learned from earlier experiences with sexually transmitted diseases. 
> Effective and inexpensive treatments for many of these diseases have long
> been available, yet drugs alone have not stemmed the tide of infections,
> especially among young people and those living in poverty.  Those prior
> experiences are underscored by the rapid reemergence of syphilis, and it can
> be said with certainty that medical science alone will not be able to
> vanquish AIDS, even with a magic bullet.   
> 
>       There is an urgent need for implementation of carefully designed
> strategies to prevent new HIV infections (primary prevention) and to prevent
> disease progression for HIV-infected individuals through early diagnosis,
> prompt treatment, and continuing care and support (secondary and/or tertiary
> prevention).  Educational programs are also necessary to alter the public's
> perceptions that HIV disease is someone else's problem.  The discrimination
> that occurs against people with HIV disease results largely from fear and
> ignorance, and the best weapon against these is education.   
> 
>       Some of the most encouraging news thus far in the HIV epidemic comes
> from the success of certain health education programs that have resulted in
> dramatic, sustained reduction in risk behavior.  There is clear evidence that
> prevention is possible; changes in attitudes and behavior can occur as a
> result of carefully tailored, targeted, and credible prevention efforts. 
> Such success is less dramatic to the public than a laboratory breakthrough,
> but probably more important.  This chapter considers an array of education
> and prevention strategies, highlights some prevention success stories, and
> offers recommendations to focus prevention efforts for the second decade of
> the epidemic.  As we move into the second decade, the Commission believes
> policies should be developed now to address future plans for the distribution
> of AIDS vaccines as well as the ethical and liability issues that will arise
> when vaccines become available.  
> 
>       A Disease of Behaviors:  Clinical and Epidemiologic Aspects of HIV When
> considering prevention strategies to alter the course of the HIV epidemic it
> is important to keep in mind the manner in which the virus is transmitted. 
> The limited modes of transmission of HIV have been well documented.  HIV can
> be transmitted through sexual contact;  by the sharing of contaminated
> injection equipment;  through exposure to infected blood or blood products; 
> and, during gestation or at birth, from an infected mother to a newborn. 
> Breastfeeding has also been identified as a potential mode of transmission. 
>  
> 
>       Understanding these modes of transmission has enabled the development
> of some practical strategies for use in stopping the spread of the virus. 
> Screening of blood and voluntary deferral of blood donors at risk of HIV
> infection has significantly reduced the transmission of HIV through the blood
> supply.  Sophisticated purification techniques, blood screening, and
> voluntary self-deferral have eliminated new HIV infections from occurring
> through the use of blood clotting factors to people with hemophilia. 
> "Universal precautions" can help patients and health care workers avoid
> exposure to HIV.  Such precautions involve the avoidance of all potentially
> infected blood or body fluids through barrier methods, without regard to the
> serostatus of patients or health care workers.  The efficacy of universal
> precautions can be strongly inferred by a substantial drop in hepatitis B
> transmission (hepatitis is a hundred times more infectious than HIV). 
> Appropriate use of condoms can decrease the risk of HIV during sexual
> intercourse.  It is also possible to disinfect injection equipment with
> bleach so that the sharing of needles and syringes does not spread the virus. 
>  
>       In addition to the strategies available to prevent new infections, much
> more is now known about how to delay progression to AIDS in HIV-infected
> individuals.  Until a few years ago, treatment regimens for HIV disease had
> been offered only to those exhibiting symptoms.  In recent years, the
> clinical management of HIV disease has improved with the development of
> therapeutic strategies involving the use of treatments such as zidovudine
> (AZT) and aerosolized pentamidine for HIV-infected individuals who are still
> asymptomatic.  This early intervention has enhanced well-being in addition to
> delaying the onset of AIDS, but its availability or lack thereof raises
> important issues of access.  To bring the benefits of early intervention to
> people in need, additional and better coordinated services will be
> required_not only greater outreach, HIV testing, counseling, laboratory
> monitoring, medications, and primary health care, but also improved
> laboratory services, better coordinated systems of care, and public and
> private financing strategies to pay for care.  
> 
>       Developing Prevention Messages 
> 
>       Frank Talk About Sex and Drugs  
> 
>       Most of the disagreement about HIV prevention is not over goals, but
> over methods to achieve goals and over who should decide which methods ought
> to be used.  As noted above, there are a number of simple, readily available
> technologies that will contribute significantly to reduction in the spread of
> HIV infection.  Yet AIDS education and prevention efforts continue to be
> stymied by an unwillingness to talk frankly about sexual and drug use
> behaviors that risk the spread of HIV.  Constraints on discussions of sex,
> whether imposed by law, political considerations, issues of morality,
> language, or culture, have been a substantial barrier to the creation and
> implementation of effective HIV prevention programs.  There is a cruel irony
> at work here, for reticence about discussing sex has become an obstacle to
> the implementation of lifesaving prevention programs.  This withholding of
> potentially lifesaving information raises serious ethical problems. 
> 
>       In the early years of the AIDS epidemic messages concerning HIV were
> couched in euphemisms.  There were warnings about the danger posed by the
> "exchange of bodily fluids" when the phrase eluded public understanding. 
> Generic, incomplete, and ambiguous messages such as this fostered
> misunderstandings about the actual dimensions of risk and the ways to avoid
> the threat posed by HIV disease. 
> 
>       Research in many areas of health education has shown that to encourage
> behavior change, prevention messages must be transmitted in a language and
> manner that can be understood by the people to whom they are directed.  Those
> who design and implement education and prevention programs must be able to
> use unvarnished language and communications that are both meaningful and
> acceptable to the particular community or group being addressed.  Where the
> communications are targeted to a specific group, the potential offensiveness
> to others to whom the message is not directed should not and need not be a
> barrier.  Congress should remove the government restrictions that have been
> imposed on the use of funds for certain kinds of HIV education, services, and
> research. In addition to crafting clear and explicit messages that are
> relevant to those at risk, a greater realism is needed in approaches to
> altering sexual behavior and drug use.  For example, although teenagers are
> encouraged to delay sexual intercourse until marriage or at least until
> adulthood, a majority of young people have not heeded such advice, regardless
> of how forcefully this message has been delivered.  In view of this stark and
> dangerous reality, advice concerning abstinence must be supplemented by frank
> talk about AIDS, and about how to avoid sexually transmitted diseases and
> unintended pregnancies.  In addition, it must reach children at a young age. 
> 
>       A similar set of problems has existed in discussions and attitudes
> about drug use as it relates to HIV transmission.  The predominant policy
> approach has characterized drug use as a criminal rather than a public health
> problem.  Here too the approach must be more than "just say no."  A more
> realistic strategy is crucial to the prevention of HIV transmission related
> to drug use.  Some of those at risk will be able to stop using drugs on their
> own, or will stop with the help of formal treatment, self-help, or
> "twelve-step" programs modeled on Alcoholics Anonymous.  Access to drug
> treatment is an absolutely fundamental element of prevention in those
> populations.  Those who find it impossible to stop using drugs, or who
> relapse following a period of abstinence from drugs, must be encouraged to
> practice safer sex and safer drug use and must be taught how to do so.    
> 
>       The Commission reiterates the recommendations made in its fifth interim
> report to the President and the Congress concerning the twin epidemics of HIV
> disease and substance use.  The federal government should expand drug
> treatment so that all who apply for treatment can be accepted into treatment
> programs.  The federal government should also continually work to improve the
> quality and effectiveness of drug use treatment.  In addition, legal barriers
> to the purchase and possession of injection equipment should be removed. 
> Legal barriers do not reduce illicit drug injection.  They do, however, limit
> the availability of new, clean injection equipment, thereby encouraging the
> sharing of injection equipment, and the increase in HIV transmission.    
>       Cultural Sensitivity _and Cultural Competence 
> 
>       As part of the need to deal realistically with issues about sex and
> drugs, it is critical that these subjects be addressed in a manner that is
> not only culturally sensitive but also culturally competent.  Especially
> since sex and drugs are sensitive topics, it is clear that the best
> prevention messages will be those developed by and for the people the
> messages are intended to reach, through community-based efforts at the local
> level.  It is essential to include people living with HIV disease in HIV
> prevention efforts.  For many communities, seeing people in education and
> prevention efforts who are directly affected by HIV will bring home the
> reality of HIV and help overcome the denial that "this cannot happen to me or
> my loved ones."  When gay men, women, people of color, and persons using
> drugs are not consulted in the design and implementation of prevention
> programs, programs directed toward these audiences will not be effective.   
>  
>       Strategies in HIV Prevention 
> 
>       The Web of Illness, Poverty, _and Alienation  
> 
>       HIV disease is associated with a host of related health and social
> problems; strategies to prevent the further spread of HIV disease must take
> these problems into account.  Other sexually transmitted diseases (e.g.,
> syphilis, gonorrhea, chlamydia, herpes, hepatitis, and venereal warts) may
> act synergistically with HIV, enhancing HIV transmission or disease
> progression.  Drug use is significantly associated with HIV disease. 
> Injection drug use poses the most direct threat of HIV transmission when
> contaminated injection equipment is shared; this is a risk for intravenous
> users of any drug, including heroin, cocaine, and steroids.  It has been less
> widely recognized that crack cocaine, alcohol, and other psychoactive drugs
> also represent serious threats when multiple sexual partners and impaired
> judgment about risk are involved.   
> 
>       From New York City to Waycross, Georgia, from San Juan, Puerto Rico, to
> Seattle, Washington, in hearings and site visits the Commission has seen how
> poverty, homelessness, lack of basic health care, lack of prevention
> services, and lack of drug treatment combine with the alienation experienced
> by gay men, poor women of color, and drug users to exacerbate the spread of
> the virus.  A dramatic example of this is the increase in sexually
> transmitted diseases in many urban and rural areas in the United States.  
> 
>       Essential Elements of Prevention Programs  
> 
>       To intervene effectively in the spread of HIV it is essential to
> consider the broader social context of the HIV epidemic, for it involves not
> only individuals at risk, but also families, cultural and social groups,
> neighborhoods, and communities at risk of multiple problems.  Although this
> adds to the complexity of HIV intervention, it also means that successful HIV
> prevention efforts will not only reduce the spread of HIV, but also are
> likely to have an impact on the rates of other sexually transmitted diseases,
> teenage pregnancy, and drug use. 
> 
>       A mix of strategies is being used throughout the country in the design
> of HIV prevention programs.  From grass roots efforts to federally sponsored
> programs, these varied approaches draw on a number of different fields,
> disciplines, perspectives, and experiences.  The potential for success in
> prevention is enhanced by government policies that are not restrictive and
> that create a climate in which prevention efforts can be creative,
> cooperative, and comprehensive.  Other interventions that have helped to
> create a positive context for HIV prevention efforts include laws guarding
> confidentiality and protecting against discrimination.  Without assurances
> that people can avail themselves of HIV prevention opportunities without
> risking the loss of jobs, housing, and health insurance, it is next to
> impossible for prevention and education services to reach those at greatest
> risk of HIV.   
> 
>       If prevention efforts are to be successful they require sustained
> commitment to change over the long term, rather than an expectation of
> short-term results.  They also require support of multiple interventions and
> strategies, rather than investment in a single "solution."  Support must be
> continuous and predictable.  Prevention programs must be accountable,
> progress and results must be measurable, and training and support must be
> provided to those administering the programs. 
> 
>       Some important prevention strategies include:  sex and HIV education
> appropriate to age levels;  treatment programs for substance users; 
> education about bleach and clean needle and syringe programs for those who
> are unable to stop using drugs;  efforts to control sexually transmitted
> diseases;  outreach programs to provide contraception to women of
> childbearing age;  easily accessible HIV antibody testing and essential
> counseling;  peer counseling; street outreach efforts;  and readily available
> condoms supported by a social marketing program that encourages their use.  
> 
>       Individual and Community Approaches 
> 
>       Efforts designed to control HIV infection create change by intervening
> at many levels.  Technological approaches will not work without changes in
> knowledge, attitudes, beliefs and behaviors.  In this second decade of the
> HIV epidemic, there will be an increasing need to supplement individual
> behavior change strategies with a concept of communitywide prevention. 
> Similar interventions aimed at changing the norms of entire communities are
> among the most promising HIV prevention strategies.  These interventions have
> proven to be effective in promoting a variety of health behaviors, such as
> family planning and cardiovascular risk reduction, including smoking
> cessation.  
> 
>          .  common identities such as gender, sexual orientation, race or
>             ethnicity, language, religious affiliation, age groupo, or a
>             genetic condition such as hemophilia; 
> 
>          .  behavior such as same-gender sex, injection drug use or needle
>             sharing, and non-injection drug use, including alcohol use;   
> 
>          .  location or setting such as hospitals, clinics, prisons,
>             churches, work environments, and schools;                     
> 
>          .  other circumstances such as possible exposure to HIV infrection
>             through blood transfusions or other use of blood products.   
> 
>       Communitywide models are designed to utilize multiple settings,
> channels, and organizations in their design, implementation, and evaluation. 
> Each community has distinct features; no two communities will be alike in
> their response to HIV disease, and thus the process by which a response to
> the HIV epidemic is mobilized in communities will also vary.  Understanding
> more about how to respond to AIDS involves understanding and respecting what
> the community regards as problems and priorities, acknowledging social
> organization and structure, and then identifying the community's available
> resources and what solutions it will be ready to employ.  These efforts must
> be supported, funded, documented, and evaluated to broaden the reach of our
> prevention efforts.  Federal, state, and local governments should join forces
> with the private sector in providing long-term support to community-based
> organizations.  As a part of this effort, the U.S. Public Health Service
> (PHS) should expand and promote comprehensive programs for technical
> assistance and capacity building for effective long-term prevention efforts. 
> 
>       Reducing Sexual Transmission of HIV 
> 
>       Substantial progress has been made in reducing sexual transmission of
> HIV infection among certain populations in some areas of the country. 
> Nevertheless, sexual transmission of HIV continues to be a major route of
> infection.  Although many more people are now aware of the types of sexual
> behaviors that risk the spread of HIV, the gulf between awareness of risk and
> long-term behavioral change can be wide.  Sexual conduct is influenced by
> complex factors, including biological drives, religious beliefs, customs, and
> cultural and community norms and values.  These aspects of sexual behavior
> make changes difficult to inculcate.  Consider how difficult it is to get
> people to stop smoking, even when they know how dangerous it is; or how much
> effort it has taken to encourage people to wear seat belts, despite the
> manifest risks of not doing so.  A psychiatrist who testified before the
> Commission made a telling comparison: "We are essentially asking people to go
> on a diet and never cheat for their entire life.  Unlike a diet, cheating may
> be lethal."  
> 
>       Same-Gender Transmission 
> 
>       Homosexual and bisexual men still bear much of the burden of HIV
> disease in the United States across all racial and ethnic groups.  In cities
> with large gay communities, such as San Francisco and New York, a substantial
> portion of gay men are infected with HIV.  The validity of programs of
> prevention is dramatically underscored by studies in the last several years
> of white gay men in urban epicenters of the HIV epidemic.  Sustained changes
> in sexual behavior have been accompanied by a marked lowering of the rate of
> incidence of new infections.  Interpretation of these trends is further
> supported by stable or falling rates of sexually transmitted diseases.   
> 
>       A dramatic change in peer behavioral norms among gay men is one of the
> heartening stories of the HIV epidemic.  Early in the epidemic, programs were
> established to impart information, to help motivate change, and to bolster
> skills necessary to change behavior, such as ways to negotiate safer sex. 
> Many of these programs came from within the gay community and relied to a
> large extent on volunteers, as many governmental agencies were not
> confronting the epidemic.  The result of these programs was that many gay men
> increased condom use, adopted safer sex practices, and reduced the number of
> their sexual partners.   Although many gay men have made remarkable changes
> in sexual behavior, these changes should not be taken as evidence that the
> job of education and prevention has been done, but rather that it can be
> done.  There are many men who engage in same-gender sex but do not perceive
> of themselves as being gay or as belonging to any gay social or political
> community.  These men are particularly difficult to reach with gay-specific
> HIV prevention messages.  Targeted messages about behavior change may have
> passed them by.  In addition, as the epidemic matures, sustained efforts will
> be necessary to prevent "relapse" among gay men who have made changes in
> their sexual behavior.  More attention to the relationship between alcohol
> and drug use and sexual behavior is warranted, as those who combine sex with
> alcohol and other drugs are more likely to engage in sexual activities that
> carry a high risk of HIV transmission. 
> 
>       Gay and bisexual men are the largest segment of people with AIDS among
> blacks and Hispanics (36 and 40 percent of cumulative cases, respectively, as
> of June 1991).  A total of 28 percent of gay and bisexual men with AIDS are
> black or Hispanic.  Despite these realities, epidemiologic and behavioral
> studies in HIV disease had until recently focused overwhelmingly on white gay
> men.  Gay men of color may face special risk-reduction challenges.  More must
> be done to reach out to these men and empower them through prevention
> efforts.   
> 
>       Women who have sex with other women have been neglected in HIV
> prevention efforts.  The lack of attention to this group of women is due in
> part to a tendency toward rigid categorization that belies the true variety
> of human sexual experience.  Lesbians are still viewed by many in terms of
> their status as members of a group rather than the behaviors they may
> practice and thus are often overlooked in prevention efforts.  Many of these
> women may have a false sense of security about their risk of HIV infection
> and consequently neglect to practice safer sex habits.  Lesbians must be
> given information about how to reduce the risk of HIV transmission and must
> be encouraged to practice safer sex with both female and male sexual partners
> and to use safe injection procedures if they use injection drugs. 
> 
>       Adolescents who are just entering a phase of sexual experimentation or
> who are beginning to express their sexual identity may be at special risk for
> HIV infection.  The well-known tendency of teenagers to deny risk is abetted
> in the case of gay youth by the lengthy incubation period of the AIDS
> virus_as many as five to ten years may pass between infection with HIV and
> development of clinical symptoms.  Approximately 20 percent of AIDS cases
> have occurred among individuals aged 20 to 29; most of these people were
> probably infected during their teenage years.  Gay males in their teens and
> twenties outside urban epicenters of HIV are significantly more likely than
> older men to engage in unprotected anal intercourse and to do so with more
> partners, according to current studies reviewed by the Committee on AIDS
> Research and the Behavioral, Social, and Statistical Sciences of the National
> Research Council.  Young gay men often wrongly perceive the risk to be solely
> from older men, deriving a false sense of security from having sex with other
> young men who appear healthy, but who actually may be HIV infected.      
> 
>       Heterosexual Transmission 
> 
>       Over the past few years concern over AIDS cases in the United States
> attributed to heterosexual contact has grown.  Cumulatively, 6 percent of all
> AIDS cases in the United States are due to heterosexual contact.  In this
> exposure category, women are at greater risk than men of acquiring infection
> through heterosexual contact.  Thirty-three percent of all women with AIDS as
> opposed to 2 percent of all men with AIDS report exposure through
> heterosexual contact.  It is important to note that a majority of female
> heterosexual cases are related to unprotected sex with an HIV-positive
> intravenous drug user.  Women of color have been particularly heavily
> affected.   
> 
>       These statistics are particularly troubling because many women believe
> they are not at risk and do not need to practice safer sex or change
> potentially dangerous behaviors.  Prevention messages are not effectively
> reaching large populations of women.  Much of the attention women have
> received in the HIV epidemic has been related to the potential for the spread
> of HIV to their sexual partners or offspring; women are frequently
> characterized, explicitly or implicitly, as "vessels of infection" or as
> "vectors of perinatal transmission."  Women need attention in their own
> right, not only in the development and evaluation of HIV prevention
> strategies, but in all aspects of HIV policy development.   
> 
>       Many prevention messages have not been grounded in the realities of
> women's lives.  Not surprisingly, such messages have not been very effective. 
> Perhaps the most unrealistic prevention message for women is the nearly
> exclusive focus on the use of condoms, advice that is naive regarding
> anatomy, gender roles, and power relationships.  The emphasis on condoms grew
> out of the early years of the HIV epidemic when sex between men was a
> predominate concern.  As more knowledge has been gained about the epidemic,
> the need for alternative prevention methods has been clearly indicated. 
> Condom use requires the active involvement of the male partner, and the woman
> must secure his cooperation or convince him to terminate the sexual
> interaction if he refuses.  The use of condoms may be complicated by the
> perception that their use is an admission of infidelity, hence threatening
> relationships of long standing.  In fact, many men report using condoms "on
> the side," but not in their primary relationships. 
> 
>       That condom use is inherently limited as a method for preventing the
> heterosexual spread of AIDS does not imply that attempts to encourage their
> use should be abandoned, but rather that such efforts should be redoubled. 
> The United States has yet to embark on campaigns such as have been undertaken
> in other countries to foster fundamental changes in social attitudes about
> condoms, through advertising, social marketing, and intensive outreach and
> reinforcement strategies.   
> 
>       Across categories of exposure, individuals for whom condoms might
> reduce risk report only limited consistent use of them.  Condoms must be made
> more widely available and information on how they can be effectively used
> must be provided.  Further, their use must be promoted through sophisticated
> social marketing strategies.  The de facto ban on network television
> advertising of condoms continues to impede their social acceptability.  These
> and other impediments to the use of condoms should be recognized and
> addressed.  More behavioral research is needed to develop methods of HIV
> prevention during sexual contact that are acceptable to both women and men. 
> 
>       While attempts to promote greater use of condoms to reduce transmission
> of HIV should continue, it is equally important that research funds and
> personnel be devoted to the exploration of alternative methods of preventing
> HIV transmission.  Increased efforts are necessary to develop a wider array
> of chemical and physical barriers to block vaginal HIV transmission that do
> not depend entirely on the male partner's cooperation.  These include gels,
> suppositories, or sponges that might be used before or after intercourse. 
> More research is needed on chemicals that kill viruses (virucides).  A female
> condom is also in development.  The diaphragm should be evaluated in terms of
> its potential role in HIV prophylaxis. 
> 
>       In considering alternatives to condoms that might be more relevant for
> women, it is important to consider not only efficacy (the probability of
> preventing HIV transmission given optimal or correct use of a prevention
> technique or device), but also effectiveness (efficacy plus the extent to
> which the device or technique will be used correctly and therefore contribute
> to a slowing of the epidemic).  Even surefire methods of prevention are
> worthless unless people are willing to use them.   Teenagers tend to deny
> risk.  Yet, even when they recognize the risks of HIV, many adolescents still
> feel they are invincible or discount the risk of HIV because other risks in
> their environment are perceived as greater and more immediate. Adolescents
> are at risk, not only from their own perceptions of lack of risk, but also
> because adults often ignore the special needs of adolescents or deny that
> adolescents are sexually active. Abstinence is an efficacious means of
> eliminating the risk of sexual transmission of HIV.  However, although many
> young people have been encouraged to delay intercourse until marriage or
> adulthood, some teenagers will choose to begin sexual behaviors during
> adolescence.  In fact, studies in 1988 revealed that by age 15, 27 percent of
> girls and 33 percent of boys were sexually active.  Half of girls had had sex
> by age 17 and half of boys by age 16; three out of four unmarried 19-year-old
> women and five out of six unmarried 19-year-old men had had sexual
> intercourse.   
> 
>       Moreover, unprotected sexual activity is clearly occurring among teen-
> agers.  Other clear evidence for adolescent sexual behavior is found in the
> high rates of sexually transmitted diseases among sexually active adolescents
> and the fact that approximately one million teenage girls become pregnant
> each year.  According to a study conducted by the National Research Council,
> entitled Risking the Future, more than 400,000 of these pregnancies occurred
> in young women 15_17 years of age.  Pregnancy still remains the focus of many
> health and sex education programs.  If birth control is the sole objective,
> an oral contraceptive may be used instead of a barrier method that would also
> help to prevent HIV and sexually transmitted diseases.  Some young women
> practice anal or oral sex as a birth control method, which may pose increased
> risks for transmission of HIV.  Education messages to young women and men
> must be twofold, teaching ways to prevent both pregnancy and disease. 
> 
>       Adolescents need clear, realistic, unequivocal prevention messages
> about the risks of HIV transmission associated with unprotected sexual
> activity, sharing of injection equipment, and sexual activity in conjunction
> with substance use.  Adolescents must also be provided with the tools
> necessary to engage in safe behaviors.  Adults must use their knowledge to
> impart information despite their own embarrassment or reluctance to discuss
> sex. 
> 
>       Although many adolescents practice risk behaviors, some have a more
> difficult time than others finding information or avoiding risk behaviors. 
> These adolescents need targeted programs.  Some studies have shown
> African-Americans, Hispanics, and other youth from communities of color to be
> less aware of what places them at risk for HIV transmission than white youth. 
> Special attention should be given to these communities.  Young people who are
> infected with the virus need counseling and education to deal with the
> difficulties of living with HIV disease.  
> 
>       Sexual Transmission Related to Substance Use 
> 
>       Sexual transmission of HIV related to substance use concerns sexually
> active individuals, whether gay, lesbian, or heterosexual, whether adult or
> adolescent.  Injection drug use is clearly linked to sexual transmission of
> HIV.  It is less well known that sexual activity in conjunction with the use
> of other psychoactive substances, including alcohol and crack cocaine, poses
> a substantial risk.  Sexual transmission with regard to substance use occurs
> when judgment about safer sex is impaired as well as when sex is traded for
> drugs.  
> 
>       Prevention messages about sexual behavior as well as drug use may be
> effectively conveyed in drug treatment programs.  Unfortunately, drug
> treatment opportunities, deficient for men, are in even shorter supply for
> women.  This problem is in part a continuation of prior inequities, for women
> have traditionally had difficulty gaining access to drug treatment
> facilities, which for the most part have been oriented toward the needs of
> men.  Women with children and pregnant women who use drugs often have special
> difficulty finding drug treatment that meets their needs.  Women in need of
> treatment are often single parents who attend to their children's needs
> before their own.  Even when pregnant drug users are accepted into treatment,
> a significant opportunity for intervention may be missed, since there are
> often no provisions for prenatal care. Sexual partners of individuals who use
> intravenous drugs are often unaware of the risks they face, either because
> their partner's drug use is covert, or part of the past, or because they are
> unaware of the associated risks of HIV.  Those who are aware of the risks may
> still face difficulty in seeking counseling for risk reduction.  Thus, the
> simple steps that must be taken to prevent AIDS, such as condom use, may not
> be so simple after all.   
> 
>       Adolescents may be at heightened risk for transmission through sexual
> activity in conjunction with the use of substances other than injection
> drugs.  While some studies indicate that adolescents may avoid intravenous
> drug use, the use of alcohol and the growing use (especially in low-income
> urban communities) of crack cocaine places these individuals at increased
> risk.  It is extremely important, therefore, not to assume that intravenous
> drug use is the only link between drugs and sexual transmission.  
> 
>       Reducing HIV Transmission Related to _Intravenous Drug Use Successful
> and sustained risk reduction among injection drug users is vital to slowing
> the spread of HIV infection.  Injection drug users place themselves at risk
> through a variety of behaviors, and may spread the virus not only to their
> needle-sharing peers, but also to their sexual partners and at birth to their
> offspring.  Hence, any potentially successful program must address drug use
> and sexual behaviors simultaneously.  It is also important to provide
> prevention education to all those who engage in the risk behavior of sharing
> injection equipment, including athletes who inject steroids and individuals
> who inject vitamins and medications.   Although there is a commonly held
> misconception that drug users in the throes of addiction are impervious to
> messages about the risk of HIV transmission, the evidence suggests otherwise. 
> Drug users know a great deal about how HIV is transmitted and are willing to
> make the changes necessary to reduce risk of transmission when encouraged to
> do so.  There is evidence that HIV prevention strategies targeting injection
> drug users can result in decreased needle sharing, increased needle cleaning,
> increased demand for sterile needles on the street, and stable or declining
> seroprevalence rates among drug users.  In addition, when such HIV-related
> interventions are offered, there is often an increased demand both for
> treatment for addiction and for primary care.  
> 
>       Some consistent messages have emerged from studies of the impact of HIV
> on drug use behaviors.  Most drug users report changing their behavior in
> response to AIDS.  There is no single method of reducing HIV risks that will
> work for all drug users; prevention strategies must encourage both cessation
> of use and the adoption of safer injection practices for those who continue
> use.  Finally, more drug users have reported changes in drug use practices
> than changes in sexual behaviors, and yet, of course, both are essential. 
> Thus, renewed efforts to encourage behavioral changes related to both sex and
> drug use are necessary. HIV associated with drug use has potential for
> extremely rapid spread.  Some cities have already experienced this, with up
> to 50 percent of intravenous drug users HIV seropositive.  In other cities
> with large populations of intravenous drug users, HIV seroprevalence remains
> at much lower levels.  The geographic variation in HIV seroprevalence among
> intravenous drug users underscores the opportunities for heading off the
> spread of HIV disease.  HIV prevention strategies targeting injection drug
> users now include clinic-based interventions, street outreach projects,
> community-based information and awareness campaigns, and both publicly
> supported and unsanctioned needle exchange programs. 
> 
>       As the Commission noted in its recent report, The Twin Epidemics of
> Substance Use and HIV, the unmet need for treatment on demand is critical. 
> In cities hard hit by both drug use and HIV disease the situation is
> extremely serious.  New York City, for example, has an estimated 200,000
> intravenous drug users, approximately half of whom are HIV positive.  Yet New
> York has only 38,000 publicly funded drug treatment slots.  Outreach efforts
> have had the positive side effect of referring individuals to treatment
> programs, but these gains will be lost if there are not enough treatment
> slots available.  
> 
>       Among the most important AIDS prevention efforts are those aimed at
> encouraging injection drug users to adopt safer injection practices, either
> by using bleach or by participating in needle exchange and distribution
> programs.  These programs have frequently been delayed or blocked by
> political and community opposition and by laws that make possession of drug
> injection equipment a criminal offense.  In some localities, criminal justice
> officials have looked the other way as local public health officials and
> activists have mounted needle exchange and distribution programs.  On
> occasion, local prevention activists charged with crimes for distributing
> clean needles have defended their actions in court, claiming that any
> violations of law in distributing clean needles were justified by the need to
> save lives.  This was borne out in the recent decision of a Manhattan judge
> who overturned criminal charges against AIDS activists engaged in
> distributing sterile needles by stating, "The nature of the crisis facing the
> city, coupled with the medical evidence offered, warranted the defendants'
> action."  Courts in Massachussetts and California have also failed to convict
> people conducting needle exchange programs. Fears that needle and syringe
> exchange and distribution programs might encourage drug use and create a new
> class of drug injectors have not materialized.  Where such programs have been
> operating, they have provided a means of encouraging injection drug users to
> join treatment programs.  Needle and syringe distribution programs deserve
> further experimentation, and laws and regulations that block implementation
> and study of such programs should be repealed. 
> 
>       Reducing Perinatal Transmission 
> 
>       HIV prevention strategies and messages for women who wish to consider
> becoming pregnant may have to be quite different than those for women who are
> willing to delay having children.  Issues of disease prevention are often
> conflated with questions of pregnancy and reproductive choice.  A number of
> steps aimed at preventing pregnancies, such as vasectomies, intrauterine
> devices, and oral contraceptives, may have little or no impact on
> interrupting the spread of HIV disease.     In recent years there has been
> much debate about whether HIV antibody testing of pregnant women or newborns
> ought to be mandatory, routine, or merely available.  The backdrop against
> which these debates are taking place is a set of clinical studies that reveal
> that transmission of the virus from HIV-positive mothers to newborn children
> is less than previously thought, approximately 30 percent or less.  HIV
> antibody testing of newborns only definitively establishes whether the
> mothers are HIV positive.  Newborns who test HIV positive may or may not be
> infected.  Some will test positive only because of the presence of maternal
> antibodies that will eventually disappear.  Debates have centered on whether
> testing or screening ought to involve all pregnant women or merely those at
> "high risk" of HIV and the extent to which counseling ought to be directive
> in discouraging HIV-infected women from becoming pregnant or bearing
> children.  HIV antibody screening of pregnant women and newborns raises
> profound moral, legal, and policy issues that are dealt with at considerable
> length in recent reports on the subject by the Institute of Medicine (1991)
> and other policy groups. 
> 
>       All women of childbearing years who are considering pregnancy or are
> pregnant must be apprised of all the options available to them_they must be
> informed of their options but not coerced into any particular decision.  Just
> as much of the advice to date for women about how to prevent the sexual
> transmission of HIV may have been of little relevance to their lives, there
> is a growing realization that  blanket advice for HIV-positive women to avoid
> becoming pregnant may not be appropriate.  As noted in a report by the
> Institute of Medicine, HIV Screening of Pregnant Women and Newborns, ". . .
> limited studies to date offer little evidence to suggest that knowledge of
> HIV infection status significantly affects women's decisions regarding
> continuation of a pregnancy or future childbearing."  For many women, having
> children is a large part of being a woman; thus, fully informed women may
> decide that it is worth running the risk of perinatal transmission to give
> birth.   
> 
>       Research and Evaluation Regarding Prevention Programs During the first
> decade of the HIV epidemic the need for epidemiologic and behavioral research
> was recognized.  The published literature that resulted consists primarily of
> a mosaic of small-scale studies, examples of behavioral interventions
> demonstrated to be effective either in reducing new HIV infections or in
> making substantial modifications to high-risk behaviors in narrowly defined
> populations.  In the earliest phases of the epidemic, a great deal was
> learned about appropriate prevention strategies among those identified to be
> at risk, especially white, self-identified gay men in urban areas. 
> 
>       There remains, however, a lack of knowledge in several areas crucial to
> education and prevention_sexual and other behavior patterns in people of
> varied cultural, racial, and ethnic groups; frequency of different types of
> sexual behavior among adolescents or adults; family or community approaches
> to prevention; technological approaches to prevention, including female-based
> research on virucides and barrier methods of prevention; large-scale studies
> of needle exchange programs in the United States; and innovative approaches
> in prevention, including communitywide approaches.     
> 
>       Greater priority and funding should be given to behavioral, social
> science, and health services research. Social marketing and communications
> research are also necessary to find out whether national mass media
> campaigns, such as CDC's "America Responds to AIDS" campaign are effective,
> among what groups, and for what purposes.  The number of racial and ethnic
> minority health professionals must be increased.  Every effort must be made
> to identify, nurture, and support researchers indigenous to the community. 
> 
>       It is critical that researchers clearly establish what does and does
> not work in prevention.  The cost of not knowing will be measured not only in
> dollars spent and opportunities missed, but also in lives lost.  Future
> prevention efforts are greatly hindered by insufficient evaluation of HIV
> prevention services and programs within CDC and other federal agencies, as
> well as within local communities.  The National Research Council (NRC) has
> proposed an evaluation strategy based on three key questions: 
> 
>       1. What interventions are actually delivered? 
> 
>       2. Do the interventions make a difference? 
> 
>       3. What interventions or variations work better? 
> 
>       As NRC notes,  "The evaluation of AIDS intervention programs is not an
> easy task:  it will take time, and it will also require a long-term
> commitment of effort and resources. . . . The nature of the HIV/AIDS epidemic
> demands an unwavering commitment to prevention programs, and ongoing
> prevention programs require a similar commitment to their evaluation."  NRC
> recommends a full complement of evaluation research, encompassing formative,
> process, and outcome evaluation (NRC, 1991). The Commission agrees that
> evaluation is needed at every step of development and implementation of HIV
> prevention programs.  Participatory evaluation_which includes groups targeted
> by the programs and groups providing the programs, as well as funding
> agencies_is a critical aspect of evaluation that has been frequently
> overlooked.  
> 
>       Communities should not be viewed by academic evaluators as a place for
> experimentation without consultation or collaboration.  There is a need for
> greater collaboration among federal agencies, especially CDC and the Alcohol,
> Drug Abuse, and Mental Health Administration (ADAMHA), related to research
> and evaluation strategies and HIV prevention.  The federal behavioral
> research establishment has an important role to play in "meta analysis"_the
> collation and comparison of various small-scale research studies.  It can
> also provide mechanisms so that those responsible for the development of
> prevention programs can be kept abreast of the latest developments. 
> 
>       But even the best efforts to increase the knowledge base and to improve
> information dissemination strategies will be for naught if the knowledge
> gained is not effectively applied.  Unfortunately, the findings of research
> on HIV education and behavioral interventions are only partially applied
> because of restrictions placed on prevention messages by the U.S. Congress. 
> In the area of prevention, it is also important that the United States
> consider adopting successful prevention models developed in other countries. 
> Examples would include sexual education programs in Scandinavia that have led
> to low rates of sexually transmitted diseases and unintended pregnancies
> (though rates of sexual activity are comparable to the United States) and
> programs of over-the-counter sales of needles and needle exchanges throughout
> Europe and Australia that have reduced needle sharing without leading to
> increased intravenous drug use. 
> 
>       A Comprehensive National HIV Prevention Initiative 
> 
>       The federal government should establish a comprehensive national HIV
> prevention initiative that integrates the approaches of federal, state,
> county, and municipal government; community-based organizations; the private
> sector; and affected populations.  This strategy should ensure both central
> coordination and local autonomy.  At the federal level, a plan should be
> established within the Public Health Service and across other federal
> agencies to coordinate development of effective HIV prevention programs,
> rather than allowing each agency or institute to pursue potentially
> idiosyncratic activities.  Emphasis should be placed on linking health care
> and prevention efforts.  The Commission stresses the urgent need for
> implementation of carefully designed strategies to prevent new HIV infections
> and to prevent disease progression for HIV-infected individuals through early
> diagnosis, prompt treatment, and continuing care and support.  Offering
> advice about changes in behavior and making referrals to education,
> counseling, and prevention services is a critical aspect of delivering HIV
> care.   
> 
>       Although some states and localities have built infrastructures to
> enable them to mount effective primary and secondary prevention programs,
> others have not.  Community-based organizations, often the heart of primary
> prevention efforts, are even less likely to have the strong administrative
> and fiscal structures that would ensure that their programs remain sound. 
> Many community-based organizations have relied upon seed money or
> demonstration grants from governmental or private foundation sources.  The
> fragility of funding streams has made it difficult to plan, implement, and
> evaluate programs, especially for newer groups in minority communities. 
> Rigid requirements hinder attempts to develop and sustain meaningful
> programs.  Delayed reimbursements jeopardize the very existence of
> community-based organizations, which are a critical element of HIV prevention
> activities nationwide. 
> 
>       Communities must find better ways to mobilize, plan, design, and
> implement comprehensive communitywide HIV prevention efforts.  Public health
> departments, community-based organizations, and affected populations must be
> able to work through and resolve conflicts.  CDC, the Health Resources and
> Services Administration, ADAMHA, states, county and municipal governments,
> and community-based organizations need flexibility in funding.  The concept
> of HIV care consortia, as in the Ryan White CARE Act, merits consideration in
> HIV prevention efforts.  The National Institute of Mental Health's model for
> mobilizing communities around issues related to the severely mentally ill may
> be another potential model.  
> 
>       The primary and secondary prevention of HIV disease deserves a place on
> everyone's agenda.  It is within our capacity as individuals, as members of
> various communities, and as a nation to halt the further spread of HIV and to
> extend and enhance the quality of life for those already infected.  We must
> learn to draw upon our diversity in order to bring people together to
> confront the challenges posed by HIV.   
> 
>       Recommendations  
> 
>       1. The federal government should establish a comprehensive national HIV
> prevention initiative.  
> 
>          This initiative should be authorized by Congress and developed by
> the Department of Health and Human Services.  It should provide flexible
> resources to state and local government and other public or private nonprofit
> entities for communitywide HIV prevention efforts.  It must also include
> input from individuals who have expertise through experience, education, or
> training.  The prevention initiative is an essential component of a national
> HIV plan.  
> 
>       2. Greater priority and funding should be given to behavioral, social
> science, and health services research. 
> 
>          Behavioral, social science, and health services research are
> currently grossly underfunded.  The Commission believes there must be a more
> appropriate balance of funding between these areas of study and biomedical
> research.  
> 
>       3. Congress should remove the government restrictions that have been
> imposed on the use of funds for certain kinds of HIV education, services, and
> research. 
> 
>          Government restrictions on certain HIV programs and on behavior-
> oriented research studies impede the fight against HIV disease.  HIV
> prevention programs and research into sexual and drug using behaviors must be
> conducted and evaluated.  Results from these and other health promotion and
> disease prevention efforts must be shared and rapidly incorporated into HIV
> prevention and education strategies.  
> 
>       4. The U.S. Public Health Service should expand and promote
> comprehensive programs for technical assistance and capacity building for
> effective long-term prevention efforts.  
> 
>       5. Federal, state, and local governments should join forces with the
> private sector in providing long-term support to community-based
> organizations. 
> 
>          Community-based efforts are now and will continue to be an integral
> part of any HIV prevention strategy.  The role of people with HIV disease
> must be recognized, encouraged, and supported.  In designing services,
> community-based organizations and their programs must be accountable, yet
> they must be afforded sufficient flexibility to implement programs that will
> best serve communities in need.  
> 
>       6. Policies should be developed now to address future plans for the
> distribution of AIDS vaccines and the ethical and liability issues that will
> arise when vaccines become available.  
> 
>       7. The federal government should expand drug abuse treatment so that
> all who apply for treatment can be accepted into treatment programs.  The
> federal government should also continually work to improve the quality and
> effectiveness of drug abuse treatment.  
> 
>       8. Legal barriers to the purchase and possession of injection equipment
> should be removed. 
> 
>          Legal barriers do not reduce illicit drug injection.  They do,
> however, limit the availability of new, clean injection equipment, thereby
> encouraging the sharing of injection equipment, and the increase in HIV
> transmission.  
> 
>       Selected Bibliography  
> 
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> School of Public Health.  
> 
>       Bandura, A. In press.  A social cognitive approach to the exercise of
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> 
>       Bayer, R. 1991.  Private Acts, Social Consequences:  AIDS and the
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> 
>       Becker, M.A., and J.G. Joseph.  1988.  AIDS and behavioral change to
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> 
>       Brindis, C.D.  1991.  Adolescent Pregnancy Prevention:  A Guidebook for
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> 
>       Cates, W., and G.S. Bowen.  1989. Education for AIDS prevention:  Not
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> 
>       Centers for Disease Control.  1990.  CDC Plan for Preventing Human
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> 
>       Centers for Disease Control.  1990.  HIV-prevalence estimates and AIDS
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> 
>       Centers for Disease Control.  1991.  CDC HIV/AIDS Prevention:  Special
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> 
>       Centers for Disease Control.  1991.  Mortality attributable to HIV
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> 
>       Coalition for AIDS Prevention and Education, National Organizations
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> 
>       Coates, T.J.  1990.  Strategies for modifying sexual behavior for
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> 
>       Coates, T.J., S. Kegeles, R.D. Stall, B. Lo, and S. Morin.  1988.  AIDS
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> 
>       DeJong, W.  1989.  Condom promotion:  The need for a social marketing
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> 
>       Francis, D.P., R.E. Anderson, M.E. Gorman, M. Fenstersheib, and N.S.
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> 
>       General Accounting Office.  1987.  AIDS Prevention:  Views on the
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> 
>       General Accounting Office.  1990.  AIDS Education:  Programs for
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> 
>       General Accounting Office.  1990.  Drug Abuse:  Research on Treatment
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>       Guydish, J.R., A. Abramowitz, W. Weeds, D. Black, and J. Sorensen. 
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>       Institute of Medicine.  1988.  Confronting AIDS:  Update 1988. 
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> 
>       Institute of Medicine.  1988.  The Future of Public Health. 
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> 
>       Institute of Medicine.  1991.  HIV Screening of Pregnant Women and
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> 
>       Kelly, J.A., and J.S. St. Lawrence.  1990.  A skills-training group
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> 
>       Marin, G.  No date.  Culturally Appropriate Interventions in Health
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> 
>       National Organizations Responding to AIDS.  1991.  AIDS Appropriations
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> 
>       National Research Council.  1987.  Risking the Future:  Adolescent
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> 
>       National Research Council.  1989.  Turner, C.F., H.G. Miller, and L.E.
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> 
>       National Research Council.  1990.  Miller, H.G., C.F. Turner, and L.E.
> Moses, eds.,  AIDS:  The Second Decade.  Washington, D.C.:  National Academy
> Press.  
> 
>       National Research Council.  1991.  Coyle, S.L., R.F. Boruch, and C.F.
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> 
>       Nelkin, D., D.P. Willis, and S.V. Parris, eds.  1990.  A Disease of
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> 
> 
>       Office of the Assistant Secretary for Health, Public Health Service,
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> 
>       Office of Disease Prevention and Health Promotion, Public Health
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> Department of Health and Human Services.  
> 
>       Office of Technology Assessment, U.S. Congress.  1985.  Review of the
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> D.C.:  Office of Technology Assessment.  
> 
>       Office of Technology Assessment, U.S. Congress.  1988.  AIDS-related
> Issues:  How Effective is AIDS Education?  Staff Paper 3.  Washington, D.C.: 
> U.S. Superintendent of Documents.  
> 
>       Panem, S.  1988.  The AIDS Bureaucracy.  Cambridge, Mass.:  Harvard
> University Press.  
> 
>       Peterson, J., and G. Marin.  1988.  Issues in the prevention of AIDS
> among Black and Hispanic men.  American Psychologist 43:871_877.  
> 
>       Petrow, S., P. Franks, and T.R. Wolfred, eds.  1990.  Ending the HIV
> Epidemic:  Community Strategies in Disease Prevention and Health Promotion. 
> Santa Cruz, Calif.:  ETR Associates/Network Publications.  
> 
>       Presidential Commission on the Human Immunodeficiency Virus Epidemic. 
> 1988.  Report of the Presidential Commission on the Human Immunodeficiency
> Virus Epidemic.  Washington, D.C.: U.S. Government Printing Office.  
> 
>       Public Health Service, U.S. Department of Health and Human Services. 
> 1987.  Information/Education Plan to Prevent and Control AIDS in the United
> States.  Washington, D.C.:  U.S. Department of Health and Human Services.  
> 
>       Robert Wood Johnson Foundation.  1990.  Proceedings:  AIDS Prevention
> and Services Workshop:  February 15_16, Washington, D.C.  Princeton, N.J.: 
> Robert Wood Johnson Foundation Communications Office.  
> 
>       Solomon, M., and W. DeJong.  1986.  Recent sexually transmitted disease
> prevention efforts and their implications for AIDS health education.  Health
> Education Quarterly 13:301_316.  
> 
>       Solomon, M., and W. DeJong.  1989.  Preventing AIDS and other STDs
> through condom promotion:  A patient education intervention.  American
> Journal of Public Health 79:453_458.  
> 
>       Stall, R.D., T.J. Coates, and C. Hoff.  1988.  Behavioral risk
> reduction for HIV infection among gay and bisexual men:  A comparison of
> published results from the United States.  American Psychologist 43:859_864. 
> 
> 
>       Surgeon General, Centers for Disease Control, Public Health Service,
> U.S. Department of Health and Human Services.  1988.  Understanding AIDS. 
> Washington, D.C.:  U.S. Government Printing Office.  
> 
>       Surgeon General, Public Health Service, U.S. Department of Health and
> Human Services.  No date.  Surgeon General's Report on Acquired Immune
> Deficiency Syndrome.  Washington, D.C.:  U.S. Department of Health and Human
> Services.  
> 
>       U.S. Congress.  House.  101st Congress, 2nd Session. 1990.  Report
> 101-591.  Departments of Labor, Health and Human Services, Education, and
> Related Agencies.  Appropriation Bill, 1991.  July 12.  
> 
>       U.S. Congress.  House.  101st Congress, 2nd Session.  1990. Report
> 101-908.  Making Appropriations for the Departments of Labor, Health and
> Human Services, Education, and Related Agencies for the Fiscal Year Ending
> September 30, 1991, and for Other Purposes.  October 20.  
> 
>       U.S. Congress.  Senate.  101st Congress, 2nd Session.  1990.  Report
> 101-516.  Departments of Labor, Health and Human Services, Education, and
> Related Agencies.  Appropriation Bill, 1991. October 10.   
> 
>       U.S. Government Accounting Office.  1988.  AIDS Education:  Reaching
> Populations at Higher Risk.  Washington, D.C.:  U.S. Government Accounting
> Office.  
> 
>       U.S. Government Accounting Office.  1989.  AIDS Education:  Issues
> Affecting Counseling and Testing Programs.  Washington, D.C.:  U.S.
> Government Accounting Office.  
> 
>       U.S. Government Accounting Office.  1989.  AIDS Education:  Staffing
> and Funding Problems Impair Progress.  Washington, D.C.:  U.S. Government
> Accounting Office.  
> 
>       U.S. Government Accounting Office.  1990.  AIDS Education:  Public
> School Programs Require More Student Information and Teacher Training. 
> Washington, D.C.:  U.S. Government Accounting Office.  
> 
>       Valdiserri, R.O.  1989.  Preventing AIDS:  The Design of Effective
> Programs.  New Brunswick, N.J.:  Rutgers University Press.  
> 
>       Watters, J.K., Y.-T. Cheng, M. Segal, J. Lorvick, and P. Case.  1990. 
> Epidemiology and prevention of HIV in heterosexual IV Drug Users in San
> Francisco, 1986_1989.  Presented at the Sixth International Conference on
> AIDS, San Francisco, Calif., June 20_24.  
> 
>       The White House.  1991.  National Drug Control Consequences:  AIDS and
> the Politics of Public Health.  New Brunswick, N.J.:  Rutgers University
> Press.   
> 
>       Prevention and Education 
> 
>       Side bar pull out information:   
> 
>       It's not good enough to say that we serve everyone.  It's not good
> enough to say that our programs are open  to all.  If we don't specifically
> design our programs in such a  way that they reach out into the community,
> that they become part of the community, and the community becomes part of
> them, they are not as functional as they need to be.  
> 
>       Coupled with our efforts to ensure access, representation, and
> inclusion is the essential work of stopping the progression of the disease
> through education and prevention activity, focusing on risk reduction and
> behavioral change. . . .  
> 
>       In communities of color, as in the majority of communities, much of the
> average behavior is clandestine, behind closed doors and unnamed or named
> differently_i.e., gay versus sex with men_so that a singular outreach
> strategy will only reach the most physically and obviously adverse
> population.  
> 
>       In our communities it is just as likely that we will reach at-risk
> people at church functions, at the barber  and beauty shop, at the WICs
> program, in jail or work release, and topless clubs, in minor camps, in the
> social clubs, at the food bank, at the pow wow, or other community events, at
> the kind of local community gathering where people are together and where
> information flows.   
> 
>       P. Catlin Fullwood 
>       July 1990  
> 
>       The present situation in Puerto Rico shows the island as having such a
> high incidence of HIV that there exists a sense of panic about being
> infected. . . .   Ignorance is evident at all levels of living_among
> employers, in public transportation, as well as funeral parlors overcharging
> for burials because they claim to be at risk of infection.  
> 
>       I feel it is urgent to bring more forceful education throughout the
> island to attempt to change the attitudes of panic and rejection suffered by
> so many patients, to become instead an environment of faith, hope and
> concern.  
> 
>       Luis Maldonado 
>       November 1990  
> 
>       When you go and talk to community people about becoming part of an AIDS
> project, they will say, "who is in charge?"  And then they will, as we say in
> our community, do a reading of that person.  
> 
>       Alyce Gullattee, M.D., F.A.P.A. 
>       December 1990     
> 
>       It's hard to educate a woman who is homeless and hungry.  
> 
>       Sandra Vining-Bethea 
>       January 1991   
> 
>       "-No mueras por ignorancia!" (Do not die because of ignorance!); "La
> Familia Hispana Contra el SIDA" (The Hispanic Family Against AIDS); "Informe
> SIDA" (AIDS Bulletin); HACER (The Hispanic AIDS Committee for Education and
> Resources); Proyecto "Vecino a Vecino" (Neighbor to Neighbor Project);
> "Iluminate.  (Como vas a manejar?  (Vivo o muerto? (Know Yourself.  How will
> you manage?  Dead or Alive?); "Las Almas de Dios" (the Souls of God); "Noche
> de Ronda" (Night of Serenades); "La Cl2nica Esperanza" (Clinic of Hope);
> CURAS, Comunidad Unida en Respuesta al SIDA (Community United in Response to
> AIDS).  
> 
>       These and many more are the collective response of the Latino/ Hispanic
> community's fight against AIDS in this country: from Miami to New York City
> and north, Cleveland, Ohio, to Salt Lake City, Utah, and south, to Texas and
> on to California and Washington State.   
> 
>       Adolfo Mata 
>       March 1991    
> 
>       What honor can there be in being a hero in a losing battle?  History
> teaches us that those who exhibit valor on behalf of the conquered become
> forgotten.  There's an increasingly large body of evidence that suggests that
> those of us who are ourselves infected with the HIV virus are already
> forgotten, especially if we are black and gay or bisexual.   
> 
>       Phill Wilson 
>       January 1990   
> 
>       Thirty-three percent of all women with AIDS as opposed to 2 percent of 
> all men with AIDS report exposure through heterosexual contact.   
> 
>       I am twenty-one years old.  I have hemophilia and am HIV positive.  I
> found out my HIV status when I was fourteen_when they thought it could mean
> I was immune.  It didn't really matter what they thought then anyway.  Death
> means absolutely nothing to a fourteen-year-old.  I thought  I was immortal
> until just about a year ago when my girlfriend at the time and I were  going
> to find out the results of her first AIDS test.  Meanwhile, most of my
> friends still think they are immortal.  This is one of the basic tricky
> aspects of AIDS for the adolescent and the young adult.  It is extremely hard
> to have a mid-life crisis and acknowledge the fact that you are going to die
> when life has just begun.  The other is the fact that this acknowledgement of
> death comes through something that is the reaffirmation of life and love_sex. 
> 
> 
>       T. H. 
>       April 1991    
> 
>       The hopelessness that is connected with adult life for young minority
> people is a future of which they are aware.  If we don't change the fact that
> they have no hopeful future, I'm not sure we can take the pressure off the
> wish to find whatever joyous escape exists in the present.  
> 
>       Mindy Fullilove, M.D. 
>       March 1991     
> 
>       We have over twenty identified Asian/Pacific communities here in
> southern California.  We speak different languages.  We come from very
> different cultures, ethnic backgrounds.  Language is a barrier for us, not
> just English.  Along with language, we have cultural barriers_gan-barr, the
> barrier of denial, bringing shame to the family.  Homophobia and/or
> homoignorance.  These are all issues and barriers that exist within our
> community.   
> 
>       Dean Goishi 
>       January 1990   
> 
>       What do we do now?  We do what many cities have been doing for several
> years now.  We take it to the street.  We take treatment to the user.  We
> take intervention to the user.  We take education to the user.  We take
> prevention to the children and families.  Prevention is all of the above.  We
> take hope to people who have no hope.  We become advocates.  We become
> transportation.  We bring food and clothing to those who have no food and
> clothing.  We let the user, the addict, and the persons living with HIV and
> AIDS know that we truly care.  We open doors for them that previously were
> shut_treatment doors, emergency care doors, medical care doors, and whatever 
> doors remain locked.  
> 
>       Edmund Baca 
>       January 1991   
> 
>       New York City, has an estimated 200,000 intravenous drug users,
> approximately half of whom are HIV positive.                   
> 
>       Yet New York has only 38,000 publicly funded drug treatment slots.  
> 
>       The medium is the message.  You can't have safe sex at Cabrini Green
> Projects.  It's not a safe place.  
> 
>       Michael James 
>       March 1991    
> 
>       Chapter 3  
> 
>       Caring for People with HIV Disease    
> 
>       Ideally, care for people with HIV disease includes a broad range of
> health care and social services designed to enhance the quality of life,
> maximize individual choice, and minimize hospital and institution-based care. 
> Such services should be rendered with compassion in a manner that allows
> people with HIV disease and their loved ones to act as partners with their
> caregivers.  This chapter recommends ways of moving toward this goal. 
> 
>       HIV disease, especially in its later stages, presents complex
> challenges for caregivers.  The host of opportunistic infections that
> characterize AIDS may attack virtually any part of the body.  HIV disease
> stubbornly refuses to be limited to any single organ or treatment strategy,
> since its fundamental mechanism is the pervasive malfunction of the immune
> system.  As long as ten years may pass between infection with the virus and
> development of full-blown AIDS.  Given the great variability in the natural
> history of HIV, care needs vary greatly over the course of the disease. 
> 
>       Care needs also vary among different populations.  HIV disease in women
> is manifested quite differently than in men; HIV disease in children is
> manifested quite differently than in adults.  Intravenous drug users often
> suffer from extensive concomitant health problems that are exacerbated by HIV
> disease.  Neurological complications of HIV disease may pose unique
> challenges.  Individuals with HIV disease also have unique social and
> psychological needs as a result of the dire nature of the illness and the
> stigma that accompanies diagnosis. 
> 
>       The epidemic is widening most rapidly among poor people in inner
> cities_a group that historically has had difficulty in gaining access to and
> finding payment for primary care services.  The epidemic also primarily
> strikes young adults, whereas systems of care for the chronically ill or
> disabled tend to be tailored to the needs of the elderly.  The sheer volume
> of people who have HIV disease or are at risk of HIV infection in certain
> hard-hit cities complicates care strategies still further.  There are many in
> the early phases of infection who could benefit from treatments designed to
> retard the onset of symptoms, as well as benefit from social and mental
> health services.  Unfortunately, many of these people have no point of entry
> into the health care system.  Millions of Americans have no health coverage,
> and even those people living with HIV disease who have some form of public or
> private insurance may still face formidable barriers in gaining access to
> needed care. 
> 
>       Developing a Continuum of Care 
> 
>       There is a range of services needed by people living with HIV disease
> and increasing agreement about where and how to provide such services.
> Ideally what is needed is a continuum of care ranging from minor help for
> people living at home to congregate living facilities with support services
> to skilled nursing care for more dependent persons in nursing homes.  There
> is no single model of care that is appropriate for all communities. 
> Nevertheless, in its travels around the country, the Commission discovered a
> number of elements indispensable for delivering continuous and comprehensive
> services for people with HIV disease.  These include: 
> 
>          y  HIV antibody testing that is voluntary and must be accompanied by
>             counseling_both anonymous and confidential testing contribute in
>             different ways and both options should be available; 
> 
>          y  education and counseling to help foster and maintain behavioral
>             changes to reduce transmission of the virus; 
> 
>          y  medical care, including drug therapy and frequent diagnostic
>             monitoring, ongoing primary care, coordination of inpatient and 
>              outpatient care, access to investigational new therapies, and
>             adequate options for long-term care; 
> 
>          y  psychological care, including mental health counseling and
>             spiritual support, that is helpful in coping with a frightening
>             and sometimes overwhelming condition; 
> 
>          y  drug treatment to help individuals stop using or injecting drugs
>             or adopt safer drug use practices; and 
> 
>          y  social services, including a range of housing options and income
>             maintenance, without which medical advances may be beyond   the
>             grasp of those who could most benefit from them. The medical
>             services needed by people living with HIV disease require a
>             multidisciplinary care approach in which a team of health care
>             providers_ including primary care physicians and consultants in
>             fields such as infectious diseases, oncology, pulmonary diseases,
>             psychopharmacology, and neurology_works together with patients,
>             their loved ones, and families to develop a plan for care.   
> 
>       A basic goal in developing plans of care for people with HIV disease,
> as with other illnesses, is to provide dignified and appropriate care in the
> least restrictive and least institutional setting possible at the lowest
> possible cost.  Cooperation among caregivers is essential in ensuring that a
> true continuum of care is available, from the time an individual first
> becomes aware he or she is at risk or learns of HIV seropositivity all the
> way through the care and support needed in the terminal phases of illness.
> Primary care practitioners and medical specialists can provide only some of
> the services needed by people living with HIV disease.  Nurses,
> psychologists, home health care workers, nutritionists, and other health care
> and mental health care workers are equally essential in ensuring the
> availability of a continuum of care.  Also crucial are social workers, case
> managers, patient advocates, and others who help people living with HIV
> disease find jobs, food, and housing_services that must be available if
> medical care is to be effective.  In some instances, especially where
> discrimination based on HIV status is involved, people with HIV disease will
> need legal advice to gain access to basic health and social services and to
> ensure that their wishes are carried out regarding decisions about terminal
> care.  It is also critical that the patient/provider relationship be based
> upon mutual respect and cooperation.  The patient must feel comfortable that
> providers are approachable about the full range of care and treatment
> options.  For example, more and more individuals are seeking advice about or
> are using nontraditional and alternative therapies, usually in conjunction
> with conventional medical treatments.  It is important to establish a
> relationship in which both the patient and provider are comfortable asking
> questions. 
> 
>       Throughout its tenure the Commission has heard testimony on local
> efforts to better coordinate care under the rubric of "case management."  The
> goal of case management is to guide patients efficiently and humanely through
> the health and social services labyrinths.  Case managers serve
> simultaneously as gatekeepers, advocates, educators, diagnosticians, brokers,
> and caregivers.  They are responsible for far more than coordinating medical
> care services; they often help find housing, help connect people with
> specific entitlement programs and other sources of income support and payment
> for health care, and link people with HIV disease with programs of volunteer
> support. 
> 
>       A variety of case management styles has emerged to meet the needs of
> people with HIV disease.  Depending upon the model involved, a case manager
> may be a nurse, a social worker, or a primary care physician.  In some
> instances, case management is funded by government, is hospital based, and is
> linked primarily to discharge planning.  Other case management programs are
> more community based and follow individuals both in and out of the hospital. 
> In some states case management is provided by Medicaid programs, this is
> especially so in those states with home and community-based waiver programs. 
> Yet other programs have emanated from prepaid, managed care programs in
> health maintenance organizations.  The success of a case management program
> is to a certain extent contingent upon the availability of a spectrum of
> necessary services. 
> 
>       The Commission believes that case management programs should be
> supported and further refined to meet the particular needs of people with HIV
> disease.  Case management offers not only the potential for saving costs,
> limiting hospital stays, and bringing coherence to service delivery, but also
> may enhance satisfaction and quality of life for those with HIV disease.  
> 
>       Assuring Availability of Health Care Providers 
> 
>       As the number of people with HIV disease grows, the availability of
> health care practitioners is an increasing concern.  The complexity of care
> for HIV disease (especially in its later stages) is such that no single
> medical specialty or discipline encompasses all the necessary skills.
> Infectious disease and oncology specialists were initially  cast in the role
> of primary caregivers in the HIV epidemic.  However, as the epidemic has
> progressed, internists, family medicine practitioners, obstetrician/
> gynecologists, and pediatricians have had to incorporate the care of HIV
> disease into their general practice.  The Commission believes that primary
> care providers should be able to counsel about HIV transmission risks;
> diagnose and treat early HIV disease;  monitor patient care; and recognize
> complications later in the disease process that require consultations from
> specialists or referrals.     
> 
>       Despite the great need for services for people with HIV disease, health
> care providers have often been reluctant to care for them.  The reasons
> include low reimbursement rates for people whose care is paid for by
> Medicaid; a lack of familiarity with and understanding of treatment for the
> disease;  fear of becoming infected during the course of treating patients; 
> discomfort in treating gay men or intravenous drug users; and unease in
> dealing with the psychological stresses of caring for dying young patients
> with multiple physical and psychological needs. 
> 
>       The Commission believes health care practitioners have an ethical
> responsibility to provide care to those with HIV disease.  Lack of
> specialized knowledge, concerns about the risk of HIV transmission, increased
> stress, or disaffection with those who are at risk are not reasons to avoid
> caring for individuals with HIV disease, although these concerns are real,
> pervasive, and must be dealt with directly.  The following section looks at
> ways to address these concerns in order to attract, train, and support
> sufficient numbers of health care providers to meet the challenge of HIV
> disease.  
> 
>       Educating Caregivers 
> 
>       HIV education and training programs for health care providers must be
> improved and expanded, and better methods developed to disseminate
> state-of-the-art clinical information to the full range of health care
> providers, including physicians, nurses, physicians' assistants, social
> workers, psychologists, and other health and mental health care providers. 
> The AIDS Education and Training Centers, federally funded by the Health
> Resources and Services Administration, have the potential for training
> thousands of care providers. Education and training programs will require the
> combined support of government agencies and professional associations. 
> Primary care providers must be trained in HIV care, and specialty backup of
> technical advice and consultation must be provided.  A few states have made
> continuing medical education in HIV care a condition of relicensure.  Some
> medical professional associations have developed extensive training programs. 
> But they should not be expected to carry the full load.  
> 
>       A greater sense of urgency is necessary in the development and
> dissemination of professional standards of care for HIV disease. The Agency
> for Health Care Policy and Research has just begun to develop standards of
> clinical care for asymptomatic HIV infection.  Professional associations of
> health care workers, with mechanisms in place for reaching their memberships,
> have a key role to play in standard setting. Fellowship programs and career
> development awards for individuals devoted to the care of people with HIV
> disease are ways of rewarding professionals and helping to establish role
> models for subsequent trainees. Career development and career advancement for
> individuals who choose to make AIDS care and education a significant part of
> their professional life should be available. 
> 
>       The adoption of "universal precautions"_avoidance of exposure to blood
> and body fluids regardless of whether or not patients or health care workers
> are believed to be infected_provides the best means of minimizing risks from
> HIV for both patients and caregivers in the health care setting.  Health care
> workers should be encouraged to  adhere vigorously to guidelines for
> infection control.  Concerted efforts must be made to work with health
> professionals at the earliest stages of training on attitudinal issues and
> ways to best manage occupational risks.  Medical schools, dental schools,
> nursing schools, and schools of allied health should incorporate into their
> required curricula training on proper ways to avoid risks from blood-borne
> pathogens.  Such programs must be continued during postgraduate training when
> young professionals form lifelong habits of practice. 
> 
>       The growing chorus of demands for mandatory, widespread HIV antibody
> testing of health care workers (HCWs) and patients threatens to drive a wedge
> between patients and their caregivers.  It also misses the point.  As the
> Centers for Disease Control (CDC) has stated, 
> 
>                  Mandatory testing of HCWs for HIV antibody, HBsAg, or HBeAg
> is not recommended. The current assessment of the risk that infected HCWs
> will transmit HIV or HBV to patients during exposure-prone procedures does
> not support the diversion of resources that would be required to implement
> mandatory testing programs. Compliance by HCWs with recommendations can be
> increased through education, training, and appropriate confidentiality
> safeguards.   
> 
>       Mass screening programs would interfere with the doctor-patient
> relationship, would encourage a false sense of security because of the time
> between when infection develops and the time when it can be measured by
> clinical tests, and would imply a significant risk of infection transmission
> in health care settings when such risk is actually very small, particularly,
> as CDC has stated, "when HCWs adhere to recommended infection control
> procedures."   
> 
>       Where Care is Provided 
> 
>       In most cities the care of HIV disease is concentrated in a few
> hospitals, often in public facilities or teaching hospitals.  Many of these
> hospitals have centralized AIDS care or established AIDS-dedicated units. 
> Hospitals and oupatient care should be linked to community-based services to
> ensure the continuum of services identified above.  HIV-related services must
> be expanded to include facilities where underserved populations already
> receive health care and human services, such as community health centers,
> migrant health centers, Indian Health Service programs, and the like. In
> addition, counseling, testing, and care related to HIV disease must be