From: nyt@nyxfer.blythe.org (NY Transfer News Collective)
Subject: Cuba's "AIDS Patient #1" Dies
Date: 4 Oct 1995 17:36:55 GMT


Via NY Transfer News Collective * All the News that Doesn't Fit


CUBA'S AIDS PATIENT #1 DIES

by Karen Lee Wald, Havana
kwald@tinored.cu

Reynaldo Morales wasn't the first person in Cuba to test positive
for HIV. Nor was he the first to die of AIDS. But through a quirk
of fate, and the universal propensity of hospitals to give all
patients case numbers, when Reynaldo Morales returned from military
service in Angola in early 1986 he became Patient #1 at Cuba's
newly created AIDS sanitorium.

Morales was married, with a 9-year-old son, and was working as a
driver for the daily newspaper "Granma," when he answered the call
for internationalist volunteers to serve in Angola in 1984. When he
returned two years later, AIDS had just become a reality for Cuba,
with one person dead, another HIV positive, and the beginnings of
contact tracing underway. The Health Ministry proposed testing all
citizens returning from extended periods abroad, and the military
were among the first to be tested.

It was to be the first of many "firsts" for Reynaldo.

On February 10, 1986 Reynaldo Morales was the first of the returning
volunteers to be admitted to the Naval Hospital.

On April 30, he was part of the first group of 23 patients who
opened the new AIDS sanitorium in Santiago de las Vegas. His
patient ID: number one.

In 1989, Reynaldo Morales was among the first group of patients to
begin working within the sanitorium. From chauffeur he graduated to
mechanic, carpenter and electrician.

Later that year, he and his wife Maria Julia (who became infected
shortly after his return, before he knew he was carrying the deadly
virus) were the first patients at the AIDS facility to be offered
the option of returning to their home and jobs as outpatients.

A few months later, they were the first of many to turn this option
down. Life had become too precarious outside the sanitorium, the
medical and psychological benefits of Cuban-style hospice care too
great. The sanitorium -- a sizeable community of attractive, modern
one-family homes and duplexes set among lush tropical gardens on an
old rural estate outside Santiago de las Vegas, a small town on the
outskirts of Havana -- had become home to Reynaldo and his family.

Here, he was able to put his many mechanical skills to use, fixing
everything from cars to electric irons.

Here, his wife --like Reynaldo, a 20-year veteran of the "Granma"
newspaper, where she had been an office worker -- became the first
president of the neighborhood council set up in the sanitorium to
duplicate the local CDRs and Popular Councils that are the backbone
of Cuba's participatory democracy.

Here they had friends, felt useful, kept busy. Reynaldo was a
wise-guy, jokester, a good friend, someone who was always ready to
lend a helping hand, to fix what was broken. Maria Julia was the
serious one in the family, liked and admired by patients and
neighbors as a leader, a mediator, a trusted spokesperson.

To some people, the AIDS sanitorium was viewed as a prison. Not to
Reynaldo and Maria Julia. Here, they lived a bucolic life Monday
through Friday, going home on weekends to meet up with their teenage
son, who would arrive a few hours after they did from the boarding
school where he was training in judo while finishing high school.
(His scholarship to the sports school was a lifelong dream granted
immediately by the Ministry of Education when his parents fell ill.)

Although not without its problems, difficulties in adaptation, and
certain loss of privacy and personal liberty, sanitorium life was
nevertheless in many ways ideal for Reynaldo and Maria Julia. Until
Reynaldo became sick.

On August 13, 1995, as the country was celebrating the birthday of
the man who initiated the Cuban Revolution, Reynaldo Morales
succumbed to the various afflictions that had been wearing his body
down for the past year. He was 42 years old.

Staff members as well as PWAs from the 300-patient sanitorium cried
openly at the old funeral home in Santiago de las Vegas, sitting in
wooden rocking chairs along walls lined with floral wreaths.

Reynaldo was part of the first group of patients to enter the
sanitorium in April of 1986; most of those who came after got to
know him through his work or his escapades. His life touched all of
theirs.

But more than this, Reynaldo's life since 1986 is also an allegory
of the progression of AIDS care in Cuba.

DIDN'T WANT OUT

I first met Reynaldo and Maria Julia in December 1989, when the
new administration began talking about offering asymptomatic HIV
carriers living in the sanitorium the option of outpatient care.

I commented to two close friends who were also patients at the
sanitorium: "You know, given all the benefits you've told me about,
it just occurred to me that some patients aren't going to want to
leave. Is that true?"

When they agreed that this was the case, I asked them to introduce
me to some people they thought might say no. They took me down a
winding, tree-shaded lane to the woodframe home of Reynaldo and
Maria Julia. The yard was dotted with orchids and a talking parrot.
A small dog yapped at us as we entered the gate.

In the house, Maria Julia wiped her wet hands on her apron and
brushed back her straight blond hair. Reynaldo, young, good-looking,
with light brown skin, dark curly hair, and sparkling eyes that
glinted of mischief, was sitting in a rocking chair when we
approached.

I told them I was interested in the fact that Cuban health officials
had begun talking about having patients who had already been
through the AIDS education, medical and psychological evaluation
programs return to their former lives. "If you were given this
possibility, what would you do?"

"Well, since I was the first one [in here]," Reynaldo responded,
"they suggested that to me." He paused. "And I said no."

Maria Julia explained that for her it was a psychological problem --
she didn't want to go back until she was well. "I don't want to live
outside with AIDS. When I go back out on the street I want to be
healthy," she told me.

"We have our jobs waiting for us, and we're getting our complete salary
as though we were still working there, and my friends from my
department have all shown a lot of solidarity towards me," she
acknowledged. "But really, this thing affects me psychologically,
and I don't think I could work..."

Reynaldo felt he could be more active, and more useful, inside the
sanitorium than outside.

"I have a carpentry shop with two power saws, and a small electrical
repair shop," he pointed out. "In the beginning I didn't have many
customers, but now I have more than I can handle..."

Asked about the possibility of returning home, he shook his head.
"I feel good here, I'm relaxed. I've noticed that I get bored a lot
when I go home on pass, there's nothing to do but go to the bread
store or do some little chores around the house. I don't like being
inactive. Here I'm constantly on the move."

His reasons for wanting to stay in the sanitorium were varied.
Having gone through the initial shock of adapting to life in a
sanitorium, Morales wsn't quite sure he wanted to deal with the
additional shocks of being a PWA out on the street. "I'm not afraid
to face anybody," he assured me, "but I like this peaceful life." Of
course, he readily admitted, they were pampered in the sanitorium.
"When I get a craving for something -- within reason -- they go out
and get it for me." Reynaldo explained, adding that he had a great
deal of flexibility -- he could go out whenever he wanted, to a
parents' meeting at his son's school or just into town
for some malt liquor or to go to the beach.

For Reynaldo, this more than compensated for the restrictions which
some of the other younger patients chafed at.

There was also the sense of security the santorium provided. "I
could go out, work, and come back here at night," he mused. "Or go
out and come back periodically for a check-up. You can never miss
the check-ups," he cautioned, "because what for someone else is just
a simple cold is much more for us. We have to come here and tell
them so they can deal with it in time."

"Ah, and something else," he added. "Here, I'm working for the
santorium. For the sanitorium, and for myself, too."

                                 *

Reyanldo and Maria Julia's house became a regular stopping point for
me over the years as I became closer to a number of the patients,
and they visited me and my children at times with their son who,
like mine, was practicing martial arts. So when some people making a
documentary on AIDS in Cuba wanted to interview a number of
patients, it was only natural that they be among the group gathered
on my back porch.

But when the interviewer wanted Reynaldo to list some of the
improvements PWAs had won over the years, he amazed all of us by
saying, "Well, the first victory was the sanitorium."

Although most Cubans saw the sanitoriums created for AIDS patients as
a necessary measure to stop the spread of the disease, and many
believed it to be in the best interests of the patients themselves,
the restrictions on personal liberty that the sanatorial policy
implied led almost everyone to consider the sanitoriums a necessary
evil or, at best, a mixed blessing.

How was that a "victory?" we asked.

"You have to understand," he began in his slow drawl, "that when we
first tested positive, we were a group of strong, healthy young men
just back from overseas, eager to get back with our wives or
girlfriends, to party, to be back on the streets.

"Instead, we found ourselves in the Naval Hospital, with everyone
looking very worried. We didn't even know why we were in there. And
pretty soon we were feeling real cooped up.

"Not that we didn't break out sometimes," he grinned. "Sometimes
friends would sneak a bottle of rum into us. And once we tied a
bunch of sheets together and climbed out the window. We played a lot
of jokes on each other and the staff.

"But we were still living in a hospital ward. So when we got a
chance to move out to the sanitorium -- to live in real apartments, be
able to walk around the grounds, have all the visitors we wanted --
that was a real improvement."

The next victory, he told us, was getting to wear clothes instead of
hospital pajamas.

The third was getting the sanitorium administration to institute the
same pass system that existed in other hospitals.

"If you are in a tuberculosis hospital, or a general hospital for
long-term care, or are recuperating from an operation or not quite
ready for one, you get to go home on pass for the weekend and still
have your bed at the hospital waiting for you, right?" he explained.
"So we said we weren't sick, so we should have the same thing."

There was only one catch: by now the patients as well as the staff
knew that they had tested positive for a virus that was neither
preventable nor curable, that could be transmitted through sexual
contact and god knows how else. AIDS was by now a rampant epidemic
in many countries, multiplying geometrically, killing thousands.

How was the Health Ministry going to protect the rest of the
population if they granted the PWAs request to go out on weekend
passes? This was early 1986, just months after the first patients
entered the sanitorium. They weren't even sure yet whether mosquitoes
could spread the disease, but they did know that unprotected sex
could. And exchange of other bodily fluids, like blood. What if one
of the PWAs got into an accident? Cut himself? Had sex during her
period?

A stopgap measure was instituted: Yes, patients could go home on
pass on Sundays. But they had to be accompanied by a staff person,
medical student, paramedic, or some other chaperone who could both
respond to any medical emergency, and oversee the situation to make
sure the patient wasn't endangering anyone else. And patients had to
start an intensive AIDS education program, along with psychological
evaluations.

Reynaldo's list of "achievements" or "victories" began to multiply.
Once the education program was in place, patients deemed
"responsible" were eventually allowed to go out on their own, in the
care of their families. One-day passes became weekend passes, and
PWAs soon found they could pretty much go out whenever they wanted--
sometimes for a week or more-- for a vacation at the beach with
family, to take care of a sick parent, to visit relatives in a
distant province.

Patients whose work skills could be put to use within the sanitorium
were offered jobs -- as office workers, doctors, nurses, lab
technicians, accountants, mechanics, cooks, gardeners. And slowly,
some began going back to jobs outside, or studying at the university.

Patients sooned formed neighborhood political councils within the
sanitorium, to resolve their own problems or discuss issues with the
administration. The fact that the new director, Dr. Jorge Perez,
"always has his door open to us" made this a lot easier.

They also helped form GPSIDA, the patients' AIDS prevention group,
to go out and speak to people in the community about how to protect
themselves and others. Until then, most people were turning a deaf
ear to the Health Ministry's attempts at AIDS education. Most people
felt they could never get AIDS. It seemed too unreal to them: in
Cuba -- people thought -- almost nobody gets AIDS, and if they do,
they're put in a sanitorium. So why worry?

But when "normal, everyday" people -- women and men, homosexual and
heterosexual, old and young -- began identifying themselves as HIV
positive at schools, dance clubs, other popular teenage hangouts,
and on local and national tv programs, people started getting the
message.

Reynaldo and Maria Julia were among the first to let themselves be
interviewed, videotaped and filmed to help get the word out. They
were among the charter members of GPSIDA -- another first.

By the time of Reynaldo's death, Cuba's program to prevent the
spread of AIDS and care for those who are stricken -- arguably the
most controversial and most successful AIDS program in the world --
had come a long way, with Reynaldo Morales and Maria Julia
Fernandez advancing and helping it advance every step of the way.

CUBA'S AIDS POLICY TODAY

It's worthwhile looking at the progression that they were part of:

At the new stage of the program, people testing HIV+ and those with
AIDS may -- as before -- receive complete residential care in one of
Cuba's 14 provincial AIDS sanitoriums or, after a brief period of
evaluation and education, they may opt to receive outpatient care
from their family doctor, while maintaining most (but not all) the
benefits formerly provided them in the sanitoriums.

This removes the one dark side of a program that otherwise was
universally heralded for its effectiveness in slowing the spread of
the AIDS virus.

The internationally recognized positive aspects of Cuba's program
included:

- A well-functioning, national health-care delivery system
with an emphasis on preventive care, and no cost to the patient.

- Cuba achieved the world's lowest rate of HIV infection from
blood transfusions by halting importation of blood products while
testing the country's entire blood supply and all new blood
donations.

- Almost totally eliminating perinatal transmission by testing
all pregnant women. (There have been only four cases of HIV
positive pregnant women who chose to carry their babies to term,
although this may increase slightly now that research has shown only
1/3 of such babies are born with the virus). Abortion is free, and
generally recommended in the case of HIV+ mothers, but the choice is
left to the woman.

- An extensive research program aimed at finding a preventive
vaccine or cure, carried out at the facilities already investigating
the use of interferon and other natural and synthetic drugs.

- Extensive (although not mandatory) testing of Cubans returning
from long periods abroad, and routine testing for HIV when other
blood tests are administered to the general population.

- Development of facilities and training of specialized staff to care
for people from the time they test positive, including doctors,
nurses, paramedics, psychologists and social workers.

The limitations of this program were primarily on the psychological
and psycho-social level. The sanitoriums that were set up, while
providing optimum overall care, were also highly paternalistic and
imposed restrictions on patients' freedom of movement --less so over
time, and for those who were deemed "responsible" -- but nevertheless
galling to those who felt themselves capable of behaving in a mature
and responsible way without someone supervising or judging them, and
without being held accountable for the irreponsibility of others.

On the plus side, people testing HIV+ have been provided with
above-average housing in pleasant surroundings, a high-protein
diet, daily access to specialized medical care, recreational
facilities and counseling in an attempt to create a stress-free
environment. Medicines (like AZT, gancyclovir, etc. were studied and
imported from abroad).

Patients are given regular blood tests and physical check-ups by
medical staff who are on the alert for the first signs of any
opportunistic infection which, if caught and treated early, can be
controlled or eliminated.

But despite increasing liberty of movement as the disease became
better understood, the sanatorial system still placed more
restrictions on the patients' mobility than was warranted by the
nature of its transmission. Even after health authorities learned
that AIDS cannot be spread by casual contact, it was still treated
as a highly contagious disease due to the simple fact that
unprotected sexual relations -- the norm in Cuba, as elsewhere --
was the predominant mode of transmission.

An ethical dilemma plagued health authorities: How to protect the
rest of the population from unnecessary risk (the responsibility
of the Public Health Ministry) without imposing burdensome
restrictions on those who carried the virus but were not yet ill?

A solution was devised by Dr. Jorge Perez Avila, medical
director of the Pedro Kouri Tropical Medicine Institute, when he was
named director of the sanitorium in 1989, in consultation with PWAs,
especially those who formed the Grupo Prevencion SIDA (GPSIDA, or Aids
Prevention Group).

The key factors in the new system, which safeguards public health but
also permits ambulatory care for seropositive patients, is an
education and evaluation program that enables the medical staff to
demonstrate to health officials -- and to a general population nervous
about the spread of the disease -- that most seropositives, once taught
about the forms of transmission of their disease, and how to live
with it (including their obligation to avoid placing anyone else at
risk) can live normal lives outside the sanitoriums.

This evaluation system had to be accompanied by a series of other
measures -- some requiring economic investment not easy to come by in
the current period -- before outpatient care could be put into
effect, however.

Among these were:

- Sanitoriums had to be built in each province so the patients would
have access to the state-of-the-art care provided in the Havana
sanitorium; these also had to be staffed, supplied (food, medicine,
laboratories, transportation, fuel, work and recreation facilities,
individual housing, furniture, etc.);

- Family doctors had to be trained in each community where
seropositives would be living, so they could provide the day-to-day
attention the patients had been receiving;

- Social workers and sexual education teams had to educate the
communities and workplaces to which seropositives would be returning
to prevent discrimination against them;

- A massive AIDS education program had to be developed throughout
the country, so that responsibility for preventing the spread of
the disease would not fall exclusively on those who already knew
they were seropositive, but would be shared by the rest of the
population. A second aspect of this program would be to complement
the work being done in specific neighborhoods and workplaces, to
teach the population as a whole to welcome and care for PWAs.

This latter step would have been impossible without the development
of the patient-initiated and run GPSIDA -- PWAs like Reyanldo and
Maria Julia who went out into the community, onto campuses, on radio
and television, to spread the word that AIDS is here, it can be
avoided, you needn't be afraid of People With AIDS but you should be
afraid of the disease itself.

Seropositve members of GPSIDA, at least in Havana, are the ones who
inform people of their positive test results, provide counseling,
support and education.

Under the current policy, most people testing positive will be given
a period of testing and orientation in a sanitorium, although based
on pre-evaluations and GPSIDA's education program, some may pass
immediately to ambulatory care.

Not surprisingly, given the economic conditions and both medical and
psychological factors, only a small percentage of patients have so
far opted for outpatient care. Like Reynaldo and Maria Julia, most
find far more reasons to remain IN the sanitoriums than to live
outside them given the economic uncertainty of the current period.

But the fact that they CAN choose brings the Cuban program to a
plateau that could easily be described as "the best of both
worlds." When asked why this was referred to as a "plateau" rather
than the final stage of the program's evolution, however, an AIDS
activist explained, "We will only consider that we have reached
the final stage when there is a way to both prevent and cure the
disease."

For Reynaldo Morales, the discovery of a cure will come too late.
But as a pioneer in the movement to develop a comprehensive program
to stop the spread of AIDS in Cuba, he contributed to a policy
that has probably saved hundreds of thousands of lives. Not a small
accomplishment.


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