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From The Philadelphia
Inquirer
December 31, 1996
Copyright 1996, Philadelphia Newspapers Inc.
Republished with permission
RX FOR AIDS: FOR SOME,
A NEW ERA
Advances Largely Bypass The Third World
India Has More AIDS
Patients Than Any Other Country.
Only A Tiny Fraction of Its People Can Afford The New Treatments
By Shankar Vedantam, INQUIRER STAFF WRITER
PUNE, INDIA: By the time Vinay Kulkarni arrived at Sanjeevan Hospital on the morning of Monday, Sept. 30, the line of clinic patients already stretched past the three rows of plastic chairs in the waiting room and to the corridor beyond. Men wearing white cotton caps leaned against the walls and women squatted on the bare floor, some balancing infants on their knees. There was a hush and whispers among the crowd as Dr. Kulkarni (KUL-KUR-nee) walked past. It was barely 10 o'clock, but the air was already viscous with heat. Two fans revolved lazily overhead. Outside, Pune had gone from the pristine quiet of dawn to a cacophony of screaming horns, dust and automobile exhaust fumes. Kulkarni, a dermatologist who specialized in AIDS, was starting another frustrating week. During the next five days, he would see several dozen AIDS patients. For most, he would be able to do little more than pat them on the back, tell them to eat and sleep well, and assure them that they weren't going to die that very night. Settling down in the examining room, Kulkarni called his first patient. * Halfway around the world, in the United States, doctors and patients were celebrating a new era in AIDS made possible by the trail-blazing class of drugs called protease inhibitors. The drugs were so promising that scientists at the international AIDS meeting in Vancouver in July talked about turning AIDS into a treatable, chronic disease like diabetes. But few are cheering in the developing world, where 93 percent of the world's 21.9 million AIDS patients live. They can't afford the new drugs. The annual cost of Crixivan, the cheapest of the three protease inhibitors, is $6,000. When combined with two other AIDS drugs needed for effective therapy, the annual cost reaches at least $10,000. That is the combined annual salary of 30 workers in India. Patients in developing countries are receiving care that is little changed from when the epidemic was first recognized 15 years ago. They are not getting drugs to prevent or treat the infections that ultimately kill people infected with HIV, the AIDS virus. Pregnant women infected with HIV are not given medicine to protect their unborn babies, so the infants are three times more likely to develop AIDS than are babies born in affluent countries. Doctors, nurses and other health-care workers are still being exposed to infection because medical facilities can't routinely afford universal precautions, such as disposable gloves and syringes. Most doctors and patients in the United States are spared such problems. But every week these challenges confront Kulkarni and a colleague, K.E. Bharucha (Bah-ROO-cha), an obstetrician at a nearby government hospital. ``When we heard the news from Vancouver,'' Kulkarni said, ``it was like rubbing salt in our wounds.'' * Salim, a young man who had been reading a health booklet in Kulkarni's waiting room, tracing the lines with his right index finger as he read, stood up when his name was called. Because of the stigma of AIDS in India, the patients in this story asked that their full names not be used. Entering Kulkarni's examining room, Salim immediately rolled back his sleeves and showed the doctor splotches on his arm. He was in his early 20s but looked closer to 16, with a wisp of mustache on his upper lip. Six months earlier, he had come to Kulkarni with persistent venereal warts, which he thought he had gotten from a prostitute, one of many the young bachelor had visited. That's when Kulkarni diagnosed him with HIV. It had taken the young man a while to understand what that meant, and now he was terrified of every sniffle. Kulkarni examined the splotches. Mosquito bites, the doctor concluded. Salim told Kulkarni that he was worried he might pass the HIV infection to someone at home - through bathroom towels or by sharing a mattress. He told Kulkarni about a local alternative-medicine doctor who had an AIDS test that would tell him how long he had to live, and who boasted of a cure. Kulkarni told Salim he wouldn't infect anyone by sharing towels or a mattress. He warned him there were many quacks in Pune and told him that no one could cure AIDS. Kulkarni did not speak to Salim about what worried him most. Eventually his young patient would develop AIDS-related infections, and there was little Kulkarni could do about it. Salim was poor - even the 30 rupees he carried in his pocket for the consultation (about 85 cents) - was a lot of money for him. In the United States and other prosperous countries, doctors would be following the young man carefully, bombarding him with medicines to thwart the cancers, pneumonia and other infections that strike people with immune systems weakened by HIV. But with his meager wages as a hotel cleaner, Salim could afford few of these drugs. So Kulkarni resigned himself to the fact that he could do little more than reassure the young man. When the time came, he would help Salim die comfortably. What else was there to do? * Drug companies have not even sought approval to sell the new protease inhibitor drugs in India. Their reasons: Barely a handful of people can afford the medicines, and Indian law might not protect their patents. But even if the new drugs were affordable, the inadequate public-health system probably would not be able to get the medicines to the poor: In 1990, India spent $21 on health care per person, compared with $2,751 in the United States. Most medical clinics, by American standards, are understaffed, poorly regulated and woefully low on supplies. Just ensuring such necessities as clean drinking water and refrigeration is a challenge. The new AIDS drugs require both of these. Women, who often lack even the most basic rights, including the right to an education, employment and health care, are at a particular disadvantage in getting care. And India is not as aggressive as Western countries in confronting the epidemic. In Philadelphia, public-health campaigns teach people how they can protect themselves from AIDS. In Pune, the disease is still cloaked in taboo. In Philadelphia, numerous clinics offer free HIV tests and the results are kept private. In Pune, an AIDS test at the Medinova Diagnostic Center costs 300 rupees and the names of those who test positive are reported to the police commissioner. In Philadelphia, it's against the law to discriminate against people infected with HIV. In Pune, privately owned hospitals routinely refuse to treat AIDS patients. * On Tuesday, the obstetrician Bharucha admitted a 23-year-old woman in labor to Sassoon General Hospital, the city's major government hospital, five miles from Kulkarni's clinic. The woman's relatives and husband told Bharucha that she had planned to give birth in a private hospital. But that morning, they had taken the results of Jayasri's (JY-sree) AIDS test to her doctor at the private hospital. They said he looked at the test results and asked her to leave. Jayasri, a slender woman from a lower-middle-class family, was taken to the obstetrics department on Sassoon's fourth floor. Women were lying on the half-dozen beds in the delivery room. It was a relatively light afternoon. On busy days, a doctor said, women ended up on the bare floor. In a nearby hallway, about 60 rubber gloves hung from a clothesline, being dried for reuse. Bharucha, a senior obstetrician, warned the doctor who would deliver the baby that Jayasri was infected. She told the younger doctor to use special precautions and put Jayasri in an isolation ward. Then she took Jayasri's relatives aside, and asked whether they had told her that she was infected with the AIDS virus. There was a good chance her baby was also infected and that both of them might die within a few years. They shook their heads no. * The AIDS epidemic initially hit Africa the hardest. But the virus is now spreading most rapidly in Asia. By 2000, Asia probably will have more infected people than Africa, according to the World Health Organization and the Harvard AIDS Institute. With more than 3 million people now infected, India already has more people living with HIV than any other country. The disease is increasingly concentrated among women, the uneducated and the poor. Pune, a city with 2 million residents, about 120 miles southeast of Bombay, has many AIDS patients. Philadelphia has an estimated 30,000 HIV patients. Though no citywide statistics are available for Pune, AIDS experts think that there may be almost that number of infected prostitutes alone. Surveys of Pune clinics, which serve poor people, show that 10 percent of their married female patients get AIDS each year from their husbands. It was 1987 when Kulkarni saw his first AIDS patient in Pune: a 62-year-old man suffering from weight loss and severe fungal infections. He wrote an article about AIDS for a local Marathi-language newspaper, explaining that people were mistaken if they believed that something in ``Indian culture'' would protect them from this ``scourge from the West.'' A few days later, the editor summoned him. ``We are a family newspaper,'' the editor said, speaking uneasily. ``We can't print an article which uses that word. He pointed at a word, laingik, which means sexual. His finger traced down the article a few lines and jabbed at the paper again, ``That word,'' he said, ``appears too many times..'' Looking back at that day, Kulkarni realized that the arrival of AIDS in India was inevitable. ``The field was plowed, the fertilizer was thrown, the irrigation was ready,'' he said. ``All we needed was the seed.'' His voice rose as he recalled the conversation, a fervor came over his face. He had seen AIDS swell from an isolated case to dozens, to hundreds and thousands. He had watched the tragedy in freeze-frames, his warnings ignored. It was clear to him now that the epidemic was not just about a virus, but about ignorance and fear and poverty, about discrimination and irresponsibility. Those things, too, he thought, would have to change. * Vinay Kulkarni sat across from a lawyer whose 31-year-old son-in-law was dying of AIDS. The lawyer had heard the exciting news from the Vancouver conference. The son-in-law, who had been a doctor in Bombay, had contracted the virus while performing surgery, the lawyer said, emphasizing that the man came from a good family and had seemed an excellent match when he was arranging his daughter's marriage. Now the son-in-law was in an advanced stage of illness, and had visited Kulkarni for treatment. The lawyer asked about protease inhibitors. ``They've said the potential is very good,'' the lawyer said, asking for Kulkarni's opinion. The doctor agreed the drugs looked promising, but said people in India could not afford such expensive medicine. These drugs are only for rich Americans and Europeans, he said. The lawyer said his son-in-law had a wealthy aunt and uncle in America. They would try to buy him a year's supply. * Dr. Bharucha rushed to the special ward, where the young doctor and a nurse stood on either side of Jayasri's bed. Jayasri clenched the metal rails of the headboard and whimpered softly. Are you wearing two pairs of gloves? Bharucha asked the doctor and nurse. The doctor said yes but the gloves ran only to her wrists, leaving her forearms bare. Her only protection was a sheet of plastic in front of her. Bharucha was worried that hospital staff could be infected if they were cut by a syringe contaminated with an AIDS patient's blood. Jayasri moaned as she pushed the baby through the birth canal. The doctor leaned forward with her forceps, and blood spilled over her gloves and those of the nurse assisting her. The doctor held her hands downward so the blood would not spill onto her forearm. But the nurse, new to the job, hadn't kept her hands lowered. ``Don't lift your hands,'' Bharucha warned. It was too late. Blood was spilling onto the nurse's arm. ``Do you want to wash?'' Bharucha asked. Behind her protective goggles, the nurse's eyes were wide and she was terrified. She nodded. But before she could move to the sink, Jayasri screamed. The nurse and the doctor bent over the bed again and lifted the baby. Then Bharucha looked down at the bed. It was spattered with blood. And right where the doctor and nurse's hands had delivered the baby, was a glass syringe, its needle tinged with blood. * Most public-health authorities agree that a new era in the AIDS epidemic won't begin in developing countries until a cheap vaccine is developed. Researchers tried to find a vaccine when the AIDS virus was identified, but ran into monumental scientific obstacles. After many frustrating attempts, the companies decided to wait until more was known about the virus. Some gave less charitable reasons for the retrenchment. ``From an industry point of view, a vaccine is not as profitable as treatment by pharmaceuticals,'' Hiroshi Nakajima, director general of the World Health Organization, said in a recent interview. Vaccines, which provide immunity for years, usually cost less than $100. The new drug combinations cost more than $10,000 a year, and patients must take them indefinitely. AIDS researchers say it's unlikely that an effective vaccine will be found within the next five years. * On Wednesday, Kulkarni was worried that one of his patients might not show up for a scheduled afternoon appointment. He had seen about a dozen AIDS patients every day that week, but Waghmare (WUG-MA-ray) was special. He was one of the few patients in Kulkarni's practice who was getting AZT. The drug was being paid for by the government oil company he worked for. Here was a patient Kulkarni could do more for than merely offer reassurance, though without the new drugs, AZT had limited value. The 35-year-old man and his wife were both infected. Waghmare had nearly died a year earlier when he got drenched in a rainstorm, contracted pneumonia and was in a coma for several days. Kulkarni liked the couple immensely. They were so loving toward each other, and the disease seemed powerless to quench their enthusiasm and cheer. Kulkarni gazed out the window. Torrential rainfall was flooding roads and disrupting electricity. Finally Waghmare arrived with his wife. He was drenched, having driven his motorcycle in the rain. He grinned. His wife was smiling. She wore a bright sari. ``What are you doing?'' Kulkarni asked. ``Don't you remember what happened last year?'' ``So long as you are here, I'm safe,'' Waghmare replied. His grin broadened and his wife laughed. Kulkarni had been keeping in touch with Waghmare, to make sure he took the full dose of his medicine regularly. Otherwise, the virus could develop resistant strains more quickly. It was getting hard to get AZT, Waghmare complained. ``What do you do when there is a shortage?'' Kulkarni asked. Waghmare grinned confidently. ``I adjust the dosage,'' he explained. ``I save one tablet a day. I take two instead of three.'' * The AZT supply for the entire city of Pune is in a depot 12 miles from the city's downtown area, an hour's journey by car on bouncy roads. The depot's distribution manager, Deepak Shinde, said people coming in for the drug are shocked when he tells them that each tablet costs 27 rupees (77 cents) or $7.70 for a strip. ``They come and ask for 10 strips,'' he said. ``When we tell them the price, they say, `Give me one strip.' '' Some patients came in with prescriptions for 15 days' worth of the medicine, even though the drug is supposed to be taken two or three times a day as long as the virus responds to it. Sometimes, Shinde said, poor patients ask him why doctors are prescribing this medicine. ``Is it very serious?'' they ask. ``I don't know,'' he replies. Shinde's office is in one corner of the cavernous depot, where cardboard boxes are stacked to heights of 15 feet and a musty odor of pharmaceuticals fills the air. How much AZT does Shinde's warehouse stock at any given time? A month's worth, Shinde said, pointing to a table. The entire supply of AZT for Pune and most of Maharashtra - a state the size of Texas, where Kulkarni estimated there were at least 45,000 AIDS patients - was contained in a single cardboard box stowed under a table. * On Friday afternoon, Bharucha checked on Jayasri, who would soon be discharged. She was sitting on the bed, her left leg dangling over the side. Her baby was wrapped in a flannel cloth, tiny eyes closed and head resting against Jayasri's thigh. The mother was gently rocking the infant. Doctors had earlier told Jayasri that she was infected with the AIDS virus. She looked at them blankly. It was something ``that was not good,'' they said, explaining that her baby might also be infected and that she should come back to the hospital the moment the baby looked sick. In the United States, Jayasri and her baby would be getting AZT. She would be loaded down with medical instructions and scheduled for many follow-up visits. Bharucha knew that the young woman did not understand the gravity of the situation. She touched Jayasri on the arm. ``Is everything all right with the baby?'' ``Yes.'' Jayasri beamed. Throughout her stay, she had been telling doctors how happily surprised she was at the special care she was receiving. * Vinay Kulkarni lifted a fluorescent lamp in one hand as he examined patients with the other. The torrential rains earlier in the week had caused huge power breakdowns, and his clinic was in darkness. It was Friday night. He set the battery-run lamp on his desk and wrote out prescriptions. His patients waited silently as his pen scratched over paper, ridges of light and shadow over their faces. Specks of dust floated in the lamp beam. Kulkarni had seen 11 HIV-infected patients this day. He was tired, and the harsh light accentuated the weariness under his eyes. By the time the last patient left, it was almost 9 o'clock. He padlocked his clinic door and groped his way down four flights of unlit stairs. When he reached the street he took a deep breath. Pune lay all around him, in pitch blackness. CAPTION: PHOTO By the light of a battery-run lamp, Dr. Vinay Kulkarni examines a patient in Pune, India. Storms had knocked out power. (For The Inquirer / MILINDA WADEKAR) Dr. Vinay Kulkarni examines a man who he suspected was HIV-positive. Kulkarni can do little for those who test positive. (For The Inquirer / MILINDA WADEKAR) Kulkarni talks with Salim, a young man who is HIV-positive and who was worried about red splotches that turned out to be mosquito bites. A month's supply of AZT tablets sits on a table in a warehouse that serves Pune and the surrounding region. SAJA Home | SAJA Stylebook | SAJA Job Bank