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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.


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