Articles
Section: Regional
Published: 2000
About
Agua Buena Director Richard Stern
by Barbara
J. Adams
To look
at him, you'd never suspect that Dr. Richard Stern is the kind of
guy to kick up the sort of ruckus that would have health ministers
fuming, drug company executives furious and Supreme Court judges convening
on constitutional law in the third world. Five-foot-nine, Stern, 52,
resembles an aging version of the kid on the beach getting sand kicked
in his face. The bully in this case is a hydra-headed monster made
up of Third World governments, pharmaceutical companies and cultural
oppression. And the game is Keep Away. Keep life-prolonging antiretroviral
drugs away from those whose very lives depend on them: people with
AIDS (PWAs) in Central America.
Dr. Richard
Stern is an AIDS activist in a part of the world where ignorance,
prejudice and fear of the disease are reminiscent of the days when
it was called "gay cancer" in the United States. In Central
America, AIDS is seen as a black mark on the family bloodline, a blasphemy
against hereditary lineage. When someone here is discovered to have
AIDS or to be HIV-positive, he is often exiled from his home, fired
from his job and generally shunned by society at large. There are
no Liz Taylors or Susan Sarandons trumpeting the cause of AIDS in
this part of the world; no special interest magazines with the likes
of Greg Louganis modeling in ads for viatical benefits. Machismo isn't
just a buzz word in Central America. The shame and discrimination
suffered by PWAs make ACT UP-style activism here nearly impossible.
Stern has had to find more subtle ways of fighting the dragon.
He earns
his living as inn keeper and psychologist in San Jose, Costa Rica.
Besides running a hostel for budget travelers and counseling clients,
Richard Stern's days are filled with journeys, sometimes by public
bus, to other Central American countries. In places such as Guatemala
City, Tegucigalpa, San Pedro Sula, Managua and San Salvador, he conducts
workshops aimed at helping PWAs organize themselves into grassroots
support groups. The landscape, he admits, is grim. In Guatemala, the
Luis Angel Garcia Clinic holds a cruel lottery that awards a year's
worth of medication to four lucky winners. Four out of the 97 patients
permitted to participate win another year of life. Ninety-three get
death. In Honduras, 20-year-old Raphael lies down on a sidewalk and
dies after being told by hospital personnel that they simply can't
treat his opportunistic infections. In El Salvador, after being thrown
out of his home for testing positive, 17-year-old Mario is sent to
a Juvenile Center where a social worker gathers the other boys together
and, with Mario present, tells them he has AIDS and that they should
avoid him.
Dr. Stern's
activism takes many forms. He pleads with drug companies for donations
and publishes articles on the internet and in the print media about
the epidemic's ravages in this isthmus and what's not being done about
it. He coordinates drug donations from PWAs in the U.S. He is in touch
with dozens of other AIDS activists worldwide in a global struggle
to lower drug prices, and to force health care systems to recognize
AIDS as a treatable disease and pay for that treatment.
For years,
Dr. Stern's efforts to bring affordable AIDS medications to those
whom he saw dying around him seemed a fool's quest. On September 27,
1997, however, his activism hit its mark, at least in one country.
The Constitutional Chamber of the Supreme Court of Costa Rica, known
as the Sala IV, decided unanimously that the government Social Security
system was legally obliged to pay for the $600-a-month cocktail of
AIDS-fighting drugs.
Fighting
for the rights of the oppressed is nothing new to Richard Stern. His
parents, a bridge builder and a university professor, raised him and
his brother with a sharp sense of social justice. He grew up in the
Hyde Park neighborhood of Chicago where the Civil Rights movement
was boiling around him. In 1966 at the age of 18, Stern, one of few
whites, marched in Chicago demonstrations organized by Martin Luther
King, Jr. and Jesse Jackson. And then, of course, there was his personal
awareness of how it felt to be an invisible minority.
"In
the '50s and '60s," he said, "no one uttered the word 'homosexual.'
The word 'gay' as we use it now didn't even exist. There were whispered
comments about perverted people who hung out in parks and molested
children. So I spent years suffering alone and thinking I was defective
and the only one with my sexual orientation. I didn't get involved
in gay rights until much later, but this early feeling of fear, shame
and separation had a big impact on me."
In college,
Stern switched majors from journalism to psychology, eventually taking
his Ph.D. in 1980. He worked as a clinical psychologist in hospitals
and schools and as an advocate for emotionally disturbed children
whose special education needs weren't met by the state system.
"I
was using some of the same skills back in the '80s in Chicago that
I have been here," he said, "using legal procedures mandated
by federal law to help people in need. I became kind of an expert
in guiding families through these procedures so they could challenge
the system and get these services." He shrugged fatalistically.
"Sometimes we won; sometimes we lost."
Richard
Stern's experience in the U.S. world of AIDS was scattered. He volunteered
for an AIDS organization in 1987 in New York City and, out of self-protection,
learned what he could. It was a time of panic and terror in the gay
community; there were so many questions about the disease. One thing
was sure: they were going to demand answers.
"In
1990 I went to some ACT UP meetings in Philadelphia. I really didn't
get that much involved but after six or eight meetings I got a flavor
of the kind of actions and organization they promoted. Already they
were publishing a magazine about treatment. It was well before antiretrovirals
but they were trying to stay alive, to pressure the government for
better research." Stern shook his head and gazed out the window
for a moment.
"Reagan
didn't utter the word AIDS until nearly the end of his presidency.
It wasn't until Rock Hudson got it that it became part of the mainstream
awareness. It was pretty horrible in those days. People just died."
Dr. Stern
came to Costa Rica to work in a drug and alcohol treatment center
in 1991. Three years later he accepted a position as in-house psychologist
for a Dutch-funded agency whose Spanish acronym is ILPES, the Latin
American Institute for Prevention, Education and Health. Focusing
primarily on the gay community, ILPES worked with various high-risk
groups, including transvestites and male and female prostitutes. Stern's
experience with the disease in the U.S. was far different from what
he faced south of the border.
"AIDS
in Costa Rica in the '80s and '90s was like the silent invisible plague,"
he said. "There was no activism, none. There were, however, these
charitable groups who viewed the person with AIDS as The Poor Victim.
Their role was to help The Poor Victim die with dignity and support.
The only medication that existed at that time was AZT and Costa Rica
wasn't giving even that, which would've been relatively cheap. By
itself AZT didn't do much, but it did improve people's health and
give them a few more months."
Support
groups didn't last. The meetings had to be held on a Thursday night
when the building was closed so no one would be seen attending. People
got too sick to come. The catastrophe consciousness among PWAs that
motivated ACT UP and other AIDS organizations in the States just didn't
exist here.
Stern
kept stoking the fires, motivating his ensemble of sick and dying
PWAs. His was the only AIDS organization whose focus was to empower
PWAs.
"It
was a micro-version of a self-help movement," he explained, "like
the Jewish Anti-Defamation League or gay liberation, where members
of the minority take their life into their own hands, develop a consciousness,
so that they're willing to fight for their rights."
He rounded
up his small group of PWAs, and made an appointment with the Defensoria
de los Habitantes, a government ombudsman organization. This was the
first organized meeting of Costa Rican PWAs with a government body
for the cause of AIDS treatment.
But nothing
came of it.
At the
Vancouver AIDS conference in 1996, Stern heard for the first time
about the new three-part cocktail of antiretroviral drugs. This medical
breakthrough bolstered his flagging spirit and he returned to Costa
Rica recharged. At the time, he was working as a counselor for Triangula
Rosa, another Dutch-funded program for AIDS prevention and support.
Armed with hope from the Vancouver convention, Stern started another
PWA support group at Triangula Rosa. And things started heating up.
"I
wrote an article for La Nacion (Costa Rica's premiere newspaper) about
the new meds, that they were expensive but were saving lives. We started
having meetings every week about strategies to get the government
to pay for them. We went to the Caja, the Defensoria and then we started
going to the drug companies. We started with Hoffman La Roche."
Costa
Rica's nationalized health care system, known locally as the Caja,
provides cradle-to-grave coverage of everyone, foreigners included,
for a small monthly fee. If one member of a family is employed, he
pays nine percent of his salary to the Caja. The employer pays 21
percent to cover health care. With one member of a family working
and paying into the Caja, all immediate family members are protected.
If unemployed, such as is often the case with foreigners or refugees,
you can get what is known as "voluntary insurance" for about
$35 a month, which covers any health care crisis.
The Caja
gave Dr. Stern and his group of PWAs the runaround, so they targeted
the drug companies next. The three-part cocktail was now for sale
- at a cost to the individual consumer of $800 per month. The average
Costa Rican earns $200 monthly and the Caja wasn't buying the drugs,
not at those prices. The group hoped to be able, somehow, to influence
the pharmaceutical firms to lower prices of the precious antiretrovirals
and thereby bear good tidings on their next foray to the Caja offices.
But again,
disappointment awaited them.
"We
had a very polite meeting with the Hoffman-La Roche people,"
said Stern. "They took us all out to an expensive Chinese restaurant.
We explained that we wanted them to donate medications because we
had fifty people who needed the meds to stay alive, and they were
a rich company and could afford this. We didn't hear from them for
six weeks so I made a call and said we'd like a follow-up meeting."
At a
brief second encounter with representatives of Hoffman-La Roche, Stern's
request was denied. He smiled wryly at the memory. "It was sort
of a naïve approach. It took me several months to realize that
decisions were made, in the case of Hoffman-La Roche, in the Zurich
headquarters and they weren't going to budge. They thought that would
be the end of it but I started writing articles and blasting them
all over the internet." His grin widened and this intellectual,
highly rational man suddenly looked like a kid out of school. "They
were furious!"
Hoffman-La
Roche did donate some AIDS testing equipment to one hospital and through
this donation and the weird events surrounding it, they formed an
ironic allegiance with Stern.
Compared
to the militant activism of ACT UP, Richard Stern's article writing
was a mild salvo. For the passive, non-confrontational Costa Ricans,
however, it was frighteningly impolite. Beaten down by discrimination
from all levels of society, they didn't want to rock the boat at the
highest.
Stern
explained. "The patients thought they were going to be punished
somehow. You know, the victim mentality. One of the doctors at the
hospital that was going to get the donated equipment didn't like what
I was doing and made up a rumor. He told patients that because of
this activism, Hoffman-La Roche had changed its mind and wasn't going
to donate the equipment. I couldn't imagine a multi-million dollar
company being so petty." Stern uncrossed and re-crossed his legs,
leaned forward, warming to his story.
"So
I called the director of Hoffman La-Roche in Costa Rica and told him
this doctor was scaring the patients, telling them the firm was going
to withdraw its offer of this equipment because of protests that the
PWAs don't have treatment and can't get their medications. He said,
well that's not true." Stern's gray eyes twinkled. His normally
calm features became animated.
"I
said, well, if you don't want me to write something on the internet
about this outrage, please send a letter to the doctor and one to
me saying it's not true." He sighed hugely in a rare moment of
satisfaction.
"So
he did. And I knew it was a powerful statement that said to the patients,
in spite of your activism, you're not going to be punished. It was
a good message for the them and it was a good message for the people
who care for them."
In the
meantime, through pleas flashed over the internet, Stern was coordinating
the receipt of donated medications from the U.S. from PWAs who had
extra, or who had switched medications, or whose doctors double-prescribed
for them after learning of the dire situation in Central America.
Friends of those who had succumbed to the virus also sent some. Excerpts
from a thick file of these emails:
Hi. I
have a ton of AZT, a little 3Tc, and over 1.5 bottles of Crixivan
(which would be over a month and a half supply of it).I'm about to
change to a new drug combo today or tomorrow, so you got me at just
the right time.
Do you
still need Crixivan, AZT and/or Viramune? I get a double supply each
month and could send the extra every other month if that would be
helpful.I know one person's medications are not much, but maybe it
will help a little. Please let me know.
I have
some HIV medications available if they would be of help. I have some
antiretrovirals and some opportunistic infection meds. Also have some
medical equipment such as I.V. tubing. Please let me know if these
items would be of use and if so, how I should send them.
I sent
the package.this morning at 10 a.m. via Postal Air. I also included
some literature on how to take the medications in Spanish. The postal
clerk said the package would take 8-10 days to reach El Salvador.Please
let me know when the meds arrive and when it is OK to ship the rest.
Many
of these e-mails came with lengthy descriptions and dosage of each
drug being sent. Richard assured donors that all meds were given to
patients up and down the isthmus who had access to physicians with
some experience working with PWAs. He made endless trips to the post
office, wrote innumerable emails to patients and donors, kept up the
daily fight.
Further
change came slowly, at first. After the Vancouver World AIDS conference
in 1996, Stern began to meet with the core group of patients who were
willing to "come out" publicly enough to attend organizational
meetings and to meet with the Caja again even after being rebuffed
by the pharmaceutical firms. In 1997, they were told that the Caja
would never pay for the antiretroviral medications. And Caja personnel
did it in such a derogatory, discriminatory, rude way, that the patients
became incensed. Costa Ricans can't abide rudeness.
Gradually,
the patients began talking about going to the Sala IV, the court that
resolves constitutional issues. Eight PWAs started meeting regularly
to write their case and three signed a resulting petition to the Court.
One of these was Guillermo Murillo, the first to "come out"
publicly as a person living with AIDS in Costa Rica.
"Because
the Sala IV was our last resort, we were both scared and incredibly
passive," Murillo said. "Richard insisted that getting the
medicines through the Caja was the only solution but we were afraid
that if we lost this case, the Caja wouldn't provide AZT even for
pregnant women with AIDS, which was being discussed at the time. We
knew we had to put a face on AIDS. I wasn't sick but I was very, very
tired. I only had two T-cells left so I was desperate."
Murillo's
story came out as a feature article in the daily La Nacion, riveting
national attention on the disease for the first time.
They
found Marco Castillo, a sympathetic lawyer, to take their notes and
turn it into a legalese draft.
"A
case had been presented to the Sala IV in 1991," Castillo explained,
"petitioning that the Caja pay for AZT. Because AZT was not a
cure, was expensive and had serious side effects, the judges rejected
it. This rejection planted doubts in the minds of Richard's group.
But they were facing their own death without these medications, so
there was little choice but to go ahead with it."
Stern
recounted the next event that changed the process from one of bureaucratic
plod to a race against time.
"Two
or three weeks after submitting the case, I got a call from a guy
who used to work for me, Willie Garcia. He cleaned the houses I rent
but had quit a few months earlier, never telling me why. He was now
in the Hospital Mexico (a social security hospital outside of San
Jose), very sick and said he needed help. He said I wouldn't recognize
him." Stern removed his glasses, rubbed his face wearily, then
continued.
"He
had "wasting syndrome," probably weighed about 100 pounds.
He had pneumonia. It occurred to me that if a person who needed the
meds were on the verge of death, the Court would have to act. I asked
Willie -- are you willing to sign a petition to the Sala IV and take
the risk, knowing for certain that you'd be exposed by the media --
television, the papers, etc. He didn't hesitate. He knew he was dying."
Stern paused and reflected a moment before continuing.
"It's
so interesting to think that Willie probably knew he was HIV positive
during those three years he worked for me. He never told me. He was
a volunteer at the Fundacion Vida but never told anyone he had it.
He'd come over to my house and ask me to explain in detail the articles
about the medications. He told me he needed the information to explain
it to the clients at the Fundacion. He never went to meetings, never
came out. It's ironic that he ended up being the spearhead in this
court case."
Stern
went to the lawyer, Marco Castillo, and told him about Willie. Immediately,
Castillo wrote up a new petition so Willie's name could be included.
They decided to find some private doctors to write letters supporting
the petition, saying without the meds, Willie would die in a very
short time. One doctor, Javier Moya, wouldn't write the letter unless
he had access to Willie's medical records, which theoretically, couldn't
be released by the Caja, even with written permission of the patient.
So Richard did some clandestine work in the medical records department
of the Caja.
"I
told them there was a group in the US who was going to send meds to
Willie but they needed a copy of his medical records and I spent one
whole day trying to get those records and copy them. The file was
an inch thick. They have one copy machine for the entire hospital
and I had to wait in line." He laughed. "If I told them
I was making copies to sue the Caja itself, they wouldn't have been
too helpful."
By this
time, Willie was very sick indeed. He left the hospital and went home.
The newspapers started interviewing him as well as the TV news media.
He was a very quiet, modest person who hadn't even wanted to come
out as one who was sick with AIDS and here he was, challenging the
national social security system. But he took the media attention in
stride and didn't complain. Friends donated money for the imported
and expensive canned nutritive drinks, such as Sustegen, and other
canned foods, as risk of infection prevented him from eating fresh
vegetables purchased in Costa Rica's markets.
Willie
was fading fast. Richard Stern knew he had to do something to speed
up the process of the Sala IV's decision.
"I
started making calls and contacted the legal clerk of one of the Sala
IV judges. He knew about the case and said the judges were very concerned.
I told him it was a matter of life and death. I was working a lot
with Guillermo Murillo. The Caja had submitted a 12-page letter stating
all the reasons they couldn't give the meds, how expensive it was
and how they had a budget deficit. Guillermo was able to find out
they were misleading us about the budget, that they had a surplus
of some enormous amount of money that they'd never spent in '96. So
we went to the Controleria to get an official audit to find out the
Caja's budget and what they were really spending, and we put that
in the file. Every time we put something in the file we sent the judges
another fax."
Willie's
condition was critical. Without telling anyone, Richard Stern contacted
PWAs in the U.S. and had them send down some medications for Willie,
enough to keep him alive for awhile longer. At this point it was a
day-to-day effort to keep Willie from dying, to maintain the pressure
on those judges.
"You
have to remember," said Stern, "that the Caja does cover
the whole population. Willie had paid into that system every month
he was working so why shouldn't he get what he needed from the system
that was supposed to cover everyone?"
On the
27th of September 1997, Guillermo Murillo came running into Richard
Stern's office with the news. The Sala IV had just decided that Willie
could get his meds. Which meant that everyone could get them. Within
a week there were 49 people who wanted to file their petition; they
wanted their medications right away. To avoid having 600 cases dumped
on their docket, the judges told the Caja to formulate a plan to handle
the onslaught. Within a few weeks the Caja's plan was in place: anyone
who had cd4 counts of 350 or less could get the triple-therapy medications.
(Cd4 cells relate to the immune system, which AIDS attacks. Healthy
cd4 counts are 1200. Below 300 and you don't have enough to fight
off diseases.)
The war,
at last, had been won.
But not
in time to save Willie. On October 10 Richard Stern visited him and
insisted he get to the hospital. Willie was taking the antiretroviral
medications, but by this time, it was too late. His lungs were eaten
up with pneumonia. Willie Garcia died in the hospital two days later,
on October 12, 1997.
About
950 PWAs now receive the life-prolonging drugs free of charge from
the Costa Rican Social Security System at a cost of about $7 million
a year. Among them are Guillermo Murillo and the other two original
signers of the petition that changed the law in Costa Rica and saved
so many lives.
Richard
Stern continues his work as an AIDS activist and has been instrumental
in forming groups in Panama which ultimately made the same changes
in medical coverage there as were made in Costa Rica. The other Central
American countries, poorer, and less democratically inclined, remain
obdurate in their opposition to pay for antiretroviral drugs for those
dying of AIDS.
