  
Kim Phuc
Caesar Chavez Sitting Bull
New Challenges in Fighting AIDS
Uganda Families Must Decide Whether Wife or Husband Will Get Medicine for HIV
By Rachel Zimmerman
Staff Reporter of The Wall Street Journal
Kampala, UGANDA- Sebasore Sadick, a slender, soft-spoken man, became infected with HIV the virus that causes AIDS, as a soldier in the Ugandan Army. He suffered from bouts of malaria, night sweats and exhaustion. But after the results of his AIDS test came back positive, he was too ashamed to tell his wife. He kept the secret for two years.
Finally-frail and unable to work several weeks-Mr. Sebasore confessed to his wife, Fatuma. She responded with the confession of her own: "We are both sick."
Now that the price of AIDS medications has fallen sharply in Africa. the couple can afford drugs that could prolong their lives -- but only for one of them. So. with a meager income and five then, the Sebasores last spring faced a terrible choice.
In Uganda and other poor nations besieged by the virus, AIDS no longer needs to be a death sentence for everyone.
The life-extending drugs that have transformed treatment of the disease in the U.S and oil reach countries have
come into the reach of thousands of families in Africa, where ~ million people are infected with HIV. But the discounts, triggered by intense public pressure on drug makers and the threat of generic competition, simply aren't deep enough for everyone. As a result, parents and relatives are making life-and-death pacts that would be unthinkable in the U.S.
"I see many" such families, says Peter Mugyenyi, a leading AIDS doctor who runs the Joint Clinical Research Centre. "Some members of the same family remain untested for fear of a possible moral dilemma."
When the Sebasores realized their dilemma, they tried to put aside their despair and focus on economics. They decided that it simply made more sense for Mr. Sebasore, as the primary breadwinner earning about $100 a month in a clothing store, to be the one to get medicines. So, even as Mrs. Sebasore contracted tuberculosis and a swollen lymphoid that would soon require surgery, the couple says they agreed his treatment, and only his treatment, should continue.
"We don't have the money to help both me and him," Mrs. Sebasore says, gesturing to her husband and trying to bide the grapefruit-sized lump on her neck. "If I die, at least you remain to take care of the children."
This grim drama is playing out in a country that is held up as a model for AIDS treatment in poor nations. A report released this week by UNAIDS, the agency that spearheads efforts to fight the global AIDS crisis, says: "Uganda has been cited as a success story inSub-Saharan Africa in its efforts to reduce HIV-prevalence levels." In Kampala. for instance, HIV prevalence declined to 14% in 1998. from 31% in 199, the report says, largely due to prevention efforts.
But even with the lower cost of drugs, only an estimated 5,000 to 8,000 Ugandans are taking AIDS medication - out of 1.5 million to two million people infected with HIV, according to broad estimates by doctors and drug wholesalers. The Ugandan government doesn't pay for AIDS drugs, and only a handful of businesses pick up even a small percentage of the cost. International aid groups offer scant financial assistance. In the U.S. even though drugs cost more than 10 times what they cost here, anyone who wants to be treated can be, due to federal and state programs and widespread private Insurance.
Just one year ago, the monthly cost of a three-drug "cocktail" used widely here cost about $415. Today, the drug combination that allows the 46-year-Old Mr. Sebasore to jog daily and continue to work costs between $100 to $120 monthly.
Nevertheless, scraping together the money is a struggle. Each week, Mr. Sebasore buys seven days' worth of Stocrin, made by Merck & Co., based in Whittehouse Station, NJ.. and Combivir, a single pill that combines AZT and 3TC, manufactured by GlaxoSimithKline of Britain.When it's available, he sometimes buys a generic knockoff of Combivir made by Indian manufacturer Cipla that brings his monthly drug bill below $100.
This eats up most of his salary as well as the few dollars Mrs. Sebasore, 39, earns selling fruit at a stand near home, a spare, mud-stained shack supplied rent-free by his boss. The financial strain was so great that shortly after he started treatment in June at the Joint Clinical Research Centre here, he wanted to stop. But a counselor told him he could develop resistance to the medicines should he start and stop erratically. He and Mrs. Sebasore decided he should continue.
For Peter Kabenga, the choice came down to buying medicines for himself, or his 14-year-old nephew. Mr. Kabenga, 26 and HIV-positive, was so weak with TB and malaria that he had to drop out of college and check himself into a clinic, where he stayed for three months. A counselor there, Rose Byaruhanga, called Mr.Kabenga's sister, a travel agent in Rwanda, and convinced her to pay for her brother's medicines. She did, for six months, then stopped. Mr. Kabenga appealed to an old family friend who runs a Kampala preschool to take him in and foot the medical bills, at least temporarily.
But Mr. Kabenga couldn't unearth such funds for his HIV-positive nephew, Eddie Kmanzi, whose father died of AIDS six years ago. Eddie has frequent outbreaks of herpes and skin rashes. But with no money to pay for treatment, Mr. Kabenga and Ms. Byaruhanga haven't told him he is infected with HIV. "At his age, it would do no good," Ms. Byaruhanga said.. "Little kids are delicate. You tell them, they get depressed."
Doctors here say decisions about which drug combinations to take are dictated largely by cost, rather than effectiveness. "It's very hard," says Gideon Rukundo, a doctor. "When they find out there's a cheaper combination there's nothing you can do. They take the medicines for three months then stop because of the cost." Despite the discounts, some drugs remain way out of reach for Ugandans, such as Roche Holding Ltd.'s drug Viracept which sells for $263 a month in Uganda.
But drug companies say treatment efforts are inching forward. "It's going slow but at least its going in the right direction," says Nancy Pekarek, a spokeswoman for GlaxoSmithKline. A spokesman for Merck says the number of people in poor countries taking its two AIDS drugs increased 40% since March where significant price cuts took effect.
But for the sick and dying, the progress isn't fast enough.
Since last December, Freddy Mayanja had been buying his AIDS medicines one or two days at a time. His brother paid for them but not for drugs to treat Mr. Mayanja's wife, Anet, who was also HIV positive
Mr. Mayania used to work for his brother, selling cassette tapes at a road side stall. But by August, with debilitating diarrhea and constant exhaustion, Mr. Mayanja couldn't leave the house. His wife cared for him full time, and together they spent their days sitting around the house, trying to conserve energy and keep an eye on their 2 1/2 year-old son, Kevin who somberly wandered around their squalid housing project located on a red dirt road studded with human-sized ruts and garbage.
Mr. Mayanja said his brother could afford medicine only for him and even that depended on how many tapes he sold each week. "When business is down, I stop taking," Mr. Mayanja said in a near whisper His wife refused to speak.
In early October, Mr. Mayanja developed a high fever, and grew even weaker. His relatives decided he should come home to his village, Gayaza, about an hour northeast of Kampala. This is a custom among the very sick, since transporting dead body is prohibitively expensive.
On Oct. 11, Mr. Mayanja died. He was 33.
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