The San Francisco Examiner - June 25, 2000
Ulysses Torassa, Examiner Medical Writer

While world leaders and pharmaceutical behemoths wrangle over whether and how people in developing countries get access to the expensive cocktail of drugs that keeps HIV in check, a handful of activists in the Bay Area are collecting surplus medicines and shipping them off to countries where most of the world's AIDS victims are dying.

It could be a leftover supply of Crixivan, some Sustiva that a patient stopped taking because of the side effects, or bottles of protease inhibitors that are reminders of a previous, failed course of treatment. Some come from patients who are taking "drug holidays" as a way of escaping some of the toxic side effects without permanently going off their regimen.

Unused, the drugs, which can cost $600 to $800 per month, are usually left to expire and then tossed in a wastebasket. But now at least some are being collected and shipped off to people like the Rev. Gideon Byamugisha of Uganda.

An AIDS activist who already lost his wife to AIDS, Byamugisha had dropped 40 pounds last year and and was battling pneumonia and malaria when he began taking Crixivan and Combivir supplied by Lisa Carver, an Oakland woman who works in HIV prevention. Since then, he reports, his immune cells have doubled and the virus is no longer traceable in his blood.

He and his family are planning to build a chapel named in honor of Carver, Byamugisha said.

"According to my doctors, I would be dead by now if I had not started on ARVs (anti-retrovirals) . . .," Byamugisha wrote in an e-mail to The Examiner. "Long live Lisa Carver. . . . Imagine if we had 1,000 Carvers in each continent!!"

Such effusive praise makes the activists involved in the shipments awkward and uncomfortable.

"It's embarrassing. They're ready to give you the shirt off their backs," said Homer Hobi, who runs the AIDS Medicine Recycling Project in San Francisco, which also collects medicines. "Part of it makes me feel good. But on the other hand, it makes me feel like I'm not doing enough."

The need, as Carver and Hobi know, is endless. What they send reaches only a minuscule fraction of the 34 million people infected worldwide. Ninety-five percent of them are in the developing world.

"It's a tiny, tiny thing - and it's not the solution," she said. She and most AIDS activists believe the answer lies in better overall health conditions, prevention strategies and a vaccine that could keep HIV from spreading.

But while governments dither, people like Carver and Hobi have stepped in - just as so many ordinary people rallied at the beginning of the AIDS epidemic here, filling needs as they came up with whatever they had at hand.

In some cases the idea grew into a formal organization, like the Aid for AIDS group in New York City that sustains 230 people, mostly in Latin America, with donated medications.

Informal efforts

In the Bay Area, Carver, Hobi and Vincent Meis, an English teacher at City College in San Francisco, are each leading informal efforts, quietly collecting medicines from doctors' offices, patients and the survivors of people with AIDS who have passed away.

Hobi focuses largely on Latin America, Meis sends medicine to Cuba and Carver works exclusively with people in Africa.

Having met and befriended people with HIV overseas, they feel compelled to do what they can to help keep at least some people alive. They believe they are collecting only a fraction of the surplus HIV medicines out there.

"If we could get all the medications just in San Francisco we could probably supply 500 people - just with what people aren't using," Hobi said. Technically, they are breaking the law, since they have no authority to possess prescription medications for others or to dispense drugs. But no law enforcement agencies appear eager to crack down. And they steer clear of drugs that would have street value in the United States, such as morphine or narcotics.

Hobi, who is gay and HIV-positive, began 21/2 years ago when a friend told him of two infected friends in Chile who couldn't get access to drugs. One thing led to another and now Hobi has a network of about 20 volunteers who help collect, pack and ship medicine to 60 to 70 people overseas.

His efforts have concentrated largely on South America, and especially Chile, where the project has a satellite office that distributes medicines to specific individuals. More recently, they've taken on patients in Thailand, the Philippines, Kenya, Uzbekistan and Russia.

Tim Meade, an American doctor who moved to Russia to care for people with AIDS, has just begun receiving medications from Hobi, which he said are sustaining George Z., a penniless 35-year-old painter in St. Petersburg who was unable to work because of his illness.

"It is only a small example of success in a very big picture which is usually characterized by a lonely death for someone completely isolated by this disease in a country that is unable to provide for their health care," Meade wrote in an e-mail. "I know Homer's organization cannot provide medicine for every one of the people that I encounter who are living with HIV, but what a great success for his organization with this man, and the many others that I believe his organization provides for!"

Earlier this month, Oakland filmmaker Erica Marcus traveled to Hobi's Noe Valley apartment to ask if he could get medications for two friends in Eastern Europe who have HIV. One of them already has sold his possessions to buy a few months' worth of medicine on the black market.

"I think this is amazing," Marcus said of Hobi's efforts. "He's saving people's lives."

Hobi said Marcus' story is common.

"What I get most often is friends and relatives calling, asking me for help," he said. "The situation these people are left in is one of desperation. The fortunate ones are the ones who get ahold of us."

Suspicion, disdain and fear

Even those receiving medications remain at great risk. People with HIV in the developing world are treated much like those who were infected in the early days of the epidemic in the United States: with suspicion, disdain and fear, Hobi said.

The mother in Nigeria who gets medicine from Hobi was first diagnosed while visiting her sister in the Bay Area. It later turned out that one of her children also is infected. Hobi said she must be extremely guarded about her condition.

"If she's public, she might be killed," he said.

In Chile, an executive for a British company was fired after a mandatory HIV test turned up positive. He had to sell his house and personal possessions to raise money for medications on the black market.

"In Chile, nobody is going to give any AIDS organizations a dime," Hobi said. "Their view is: It's a bunch of queers and drugs addicts, so let them die."

Hobi sends medication only to people who are under a doctor's care for their HIV infection. And he has one other requirement: that the people who get medications help in the fight against AIDS in their own countries.

Vincent Meis' efforts began shortly after a trip to Cuba in 1995. There he met AIDS activists, including a doctor who was infected with HIV himself. When he got back, he began rounding up medicine for them.

"I knew that a lot of people with HIV were changing medications and, of course, unfortunately, some people don't survive and they leave behind medications," said Meis, who teaches English as a second language at City College. "I saw people I knew throwing them away or letting them sit on the shelf until they expired and then throwing them away."

Meis now supplies medicine for about 10 Cubans, and sends additional odd lots of medication that can be used by others. He makes two or three trips a year to Cuba to drop off medicines and has regular contacts with others that travel there and can take shipments.

But for Hobi and Carver, getting the drugs to the people who need them is often the most challenging part. Many countries impose costly tariffs on drugs, so Hobi must disguise packages as ''vitamins," or otherwise mask their true contents.

Poached drugs

The difficulties are even worse in African countries, where valuable AIDS drugs are easily poached by people looking to sell them on the black market. That's one reason Hobi has been slow to sign up people there.

But Carver, who was one of Hobi's early volunteers, was personally moved by African activists she met through the big international AIDS conferences held every two years. Carver works in AIDS prevention at the Tri-Cities Health Clinic in Fremont.

Just after protease inhibitors came on the scene, the 1996 meeting was full of promises and hope that the advances would soon make their way to developing countries, Carver said.

But when the AIDS conference met again in 1998 in Geneva, things had gotten worse, not better.

"There was so much anger there, especially from people in Africa and India. They were saying, 'Nobody is doing anything to help us,' " Carver said. Some of the friends she met at the conferences who were infected asked her directly: "Can you help me?"

"I was trying to understand what I could do besides write letters," she said. Someone put her in touch with Hobi, and later she decided to concentrate her efforts on Africa, where there is virtually no access to HIV medications. "It's really hard to mail stuff to Africa and it seems everybody does stuff for Latin America," she said. "I don't know too many groups that are sending meds to Africa."

Carver is especially concerned about reports she's heard of well-meaning people simply sending off a bottle or two of HIV drugs without being able to guarantee the recipients a steady supply.

"I've heard stories from a lot of people in Africa of boxes of medicine that come in and that somebody may go to a clinic and get some medicine and the next month when they come back there may not be any more," she said.

There are also risks that the medicines will end up being sold or on the black market. Hobi said a bottle of AIDS drugs can fetch $40 on the black market in Chile.

Hobi found out firsthand about the pitfalls when he learned earlier this year that the clinic in Chile where he was sending medicine was selling some of it to pay for other medicines people needed. No one was getting rich off it, but

Hobi quickly reorganized his efforts there. "The temptation is simply too great in the developing world," Hobi said.

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