AIDS

I was walking home last night when I saw people in orange ponchos handing out pamphlets and another thirty or so sitting in a circle with candles.

I thought it was a vigil for the Orange political party.

Actually, it was a vigil for Romanian AIDS victims, as December first was International AIDS Day.

From the New York Times:

By DONALD G. McNEIL Jr.

Published: February 11, 2004

BUCHAREST, Romania — After a long, clumsy war against AIDS, Romania has finally declared itself the winner.

"Yes — at this moment, we have a victory," said Dr. Adrian Streinu-Cercel, president of the National AIDS Committee. "Everyone who needs triple therapy is getting triple therapy."

The country, which became infamous in 1990 for the squalid orphanages and babies dying of AIDS that marked the final years of Nicolae Ceausescu's dictatorship, is now being cited as a model of how governments, drug companies and international agencies can bring AIDS under control by ensuring that the necessary three-drug anti-retroviral cocktails are available and paid for.

"One of the big lessons of Romania," Dr. Peter Piot, executive director of Unaids, a United Nations agency, said recently, "is that it can be done."

At the same time, public health experts fear that a second wave will hit soon. Children infected in the late 1980's are now becoming old enough to have sex, give birth and breast-feed, all ways of transmitting H.I.V., the virus that causes AIDS. Cheap heroin also has come to Bucharest, where many users share needles.

Even the infected themselves are finding that being granted a longer life can be a mixed blessing. As they grow up, they become more aware of their plight, and more frustrated at the discrimination they face.

All the same, for a poor country like Romania, where the average wage is only $6 a day — less than a quarter of Poland's and one twenty-fifth of Germany's — getting enough drugs and stopping the spread of the disease even for the moment is a remarkable accomplishment. No country outside North America or Western Europe can echo the claim.

Multinational pharmaceutical companies particularly like to cite Romania, because its successes were achieved without importing inexpensive generic drugs. Instead, the companies cut their prices and donated money to set up laboratories and train doctors.

Nonetheless, a recent World Health Organization report found prices "still substantially higher than in other parts of the world."

Because Romania's AIDS burden is so unusual, though, and the percentage affected so small, it is hard to know how good a model it is.

The country has only about 10,000 infected people, compared with South Africa's 5 million or India's 4.6 million. Ukraine, just to the east, is believed to have more than 300,000 infected.

Also, a vast majority of the infected in Romania — perhaps 7,000 — are in a small and tragic cohort that is clearly defined. Most are people ages 12 to 17 who were injected with contaminated blood as infants, from 1987 to 1991.

In those days of scarce food and vitamins, Romanian doctors gave "micro-transfusions" of blood to anemic babies. They also used immunoglobulins, made from blood products, for relatively minor illnesses. School nurses reused vaccination needles.

Some of today's victims were rescued from orphanages when aid poured in after Mr. Ceausescu's overthrow and execution in 1989. Most of those who are still alive, however, have parents; their H.I.V. infections were found only as they got older.

In 1997, when the government created its AIDS plan, fewer than 30 Romanians were on triple anti-retroviral drugs. By 2000, hundreds of children were. Then, because of a combination of high drug prices and bungled federal budgets, the money ran out. Death rates shot up.

The ensuing outcry was the catalyst for change. The government created a committee of public health officials, lawmakers, parents, advocates for patients and drug companies, headed by Dr. Streinu.

The national AIDS budget rose slowly starting in 1997, to $30 million a year from $3 million, and Romania won a $49 million grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria.

Now everyone in treatment is tracked on one national database. Those with full-blown AIDS — about 5,300 patients — get not only triple therapy, but a daily $2 food allowance, a monthly stipend of $100 for a caregiver (usually a child's mother) and 12 train tickets a year to Bucharest or another city for tests and counseling.

The government buys AIDS drugs in bulk, giving it more bargaining power than individual hospitals, and does not tax them.

A crucial part of the mix was that the drug companies reduced their prices. Merck & Company led the way in March 2001, cutting the prices of its two AIDS drugs by 86 percent. The company had already donated more than $1 million toward the program.

The company now "sells these drugs at no profit in Romania," said Dr. Adrian Caretu, manager of Merck's office here. By 2002, five other drug companies had either cut prices or offered to donate two or three free anti-retroviral pills for each one bought here.

Most chose to donate, explained Eduard Petrescu, the country's Unaids adviser, because European governments often use prices in nearby countries as a guide for setting drug prices. The drug companies, he said, "feared this would open the door to price reductions across Europe."

Now that the epidemic is tamped down — only about 350 new cases appear each year, mostly among adults contracting H.I.V. infections from sex or babies born to H.I.V.-positive mothers — officials are hoping to keep it that way. But there are ominous signs.

"Victory?" said Maria Georgescu, director of the Romanian Association Against AIDS. "I don't know. That means you are on top and can manage everything, and that's not the case."

About 2,000 infected Romanians never show up for treatment. Some have developed drug resistance and dropped out, waiting to die. Some dislike the side effects of the anti-retrovirals. Some teenagers are in families that are too poor and disorganized to bring them in or that refuse to accept their diagnoses.

What is more worrisome, she said, is "that we are awaiting an explosion among drug users." Bucharest alone has an estimated 30,000, and hepatitis C, transmitted by needle-sharing, is rampant.

"If the AIDS virus gets among them," said Mr. Petrescu of Unaids, "there could be another 10,000 infected in one year. It would ruin all the work done in the last five years."

Counselors are trying to teach the youngsters already infected about protected sex.

Vasi, who was left at a Bucharest hospital as a sickly child and sees his rural family only occasionally, is now a fairly healthy 15-year-old who wears three earrings in his left ear, listens to Eminem and hangs out at McDonald's.

"If I tell a girl I have H.I.V., she will freak out, she will panic," he said through a translator at a session with a hospital psychologist. "I had a girlfriend this summer. She knew, but she wouldn't tell anyone."

"We did kiss," he added, "but I protected her if I felt anything wrong, like if I had bitten my tongue. I was very careful to keep my nails short, to not scratch her by accident."

He said he was afraid to have sex with her. "I am afraid that no one will ever accept me," he said. "It's too much sacrifice for a girl."

In the same hospital, a social worker and nurse talked about Florentina, a girl they had to drop from the anti-retroviral program.

"She was here since she was 4 or 5," the social worker said. "She used to bake cookies with my daughter. But when she was 16, she met a boy at a metro station, a street kid. She began living with him."

Florentina stopped taking her pills on time — raising the risk of resistance — and became obnoxious about all medical care. The nurse said she gave Florentina medicine for a rash. "She said to me, `Oh, I have no problem if you want to come over and wash me and put it on, but I have no time to wash myself.' "

The doctor in charge of the hospital's AIDS program mentioned that Florentina was 9 weeks pregnant.

"So?" the frustrated nurse said to a reporter. "You hear how she learned to use a condom?"

In Galatsi, an impoverished river port town in northeastern Romania, Ciprian, 14, and Costel, 15, are roommates in a small "apartment orphanage." They go to special-needs schools because they were forced out of regular ones once their infections became known. They say they never mention their status to their classmates, even though they know some are H.I.V. positive.

Discrimination almost caused one of their apartment-mates, 11-year-old Anisor, to lose a leg over a sprained ankle. A tight cast cut off his circulation, but doctors refused to look at him again, said Dr. Anna Burtea, who runs the orphanage. One said it was hopeless and scheduled an amputation. Dr. Burtea said she begged a nighttime attending doctor to perform pressure-relieving surgery that saved the leg.

Even then, she said, "we had to keep someone there for a month to get his food and change his dressing. The doctor was nice, but the staff were keeping their distance."

Now that they are teenagers, the infected youngsters are contemplating their futures.

Ciprian, the tallest and strongest, wants to be a carpenter, build his own house, join the army — "I don't know if I am allowed," he cautioned — then get married, have two or three children. Then, "Who knows? Maybe I can have a business to help street children."

He only looks for H.I.V.-positive girlfriends, he said. "Because if I were to choose a girl who is not H.I.V. . . ." his voice trailed off. "I don't want to infect others."

Costel dreamed of being an F.B.I. agent, but now realizes that his health and citizenship make that unlikely. He wants to finish school and find someplace to live with his sister and brother, because the grandmother they live with is near death.

It is "a little premature" for these youngsters to plan for marriage or careers, Dr. Streinu said. He is proud that the average life expectancy for a Romanian with full-blown AIDS is up to six years. A few years ago, it was six months. His pessimism frustrates Mary Veal, an American volunteer who has worked with infected children in Romania for years.

"I got news for him — these kids are thinking about it," she said. "I can't look at these kids and ask, `How long are you going to live?' Their friends started dying before age 8, when the anti-retrovirals came, and they're still here."