SRINAGAR, INDIAN-ADMINISTERED KASHMIR – Amit Sharma, 40, was a high-level executive at a multinational corporation in New Delhi for more than a decade. In 2008, when he came down with a severe cough, he never imagined the sickness would derail his entire life.
Sharma says he tried new medicine after new medicine, but the cough persisted and over time, he grew weaker.
“I was almost dead and couldn’t speak. I went on leave from my office,” he says. After months with no diagnosis, doctors finally recommended an HIV test. “After [a] few days, I received a phone call from the clinic saying that I tested positive. The news almost collapsed me. My wife went in [to] shock,” he says.
After receiving the diagnosis Sharma became suicidal. In his depression, his thoughts became fixed on a car accident in 1991.
In 1991, Sharma was an engineering student in Maharashtra, a state located in southwestern India, when he was in a serious motor vehicle accident. “I lost a lot of blood and [a] blood transfusion was required,” he says.
Maharashta was the first state in India to become a high-prevalence HIV area. The first cases of HIV were reported there in 1986. Sharma believes his infection was a result of the blood transfusion he received after the accident. Nearly 20 years went by before he became ill, a rare but not unheard of delayed onset of the virus.
Upon his HIV diagnosis, Sharma says he was admitted to the All India Institute of Medical Sciences in New Delhi. “The infection was almost at [the] fourth stage, which is considered a crucial stage in HIV infection,” he says.
Sharma says his wife and two children have been a great support to him. His wife’s HIV test results were negative – a rarity among married women whose husbands are HIV positive.
Soon after the diagnosis, the couple returned to their hometown, Jammu, the winter capital of the state of Jammu and Kashmir, where Sharma started treatment and counseling. He learned his CD4 count was dropping. His immune system was crashing.
Sharma started antiretroviral drug therapies, which consisted of a cocktail of three drugs to help suppress the virus and stop it from progressing. In his first months in Kashmir, he says he faced consistent discrimination from neighbors and even doctors. “When I went to see a medico he asked me to stay at distance,” Sharma says. “Before the infection was detected, everyone treated me with respect.”
In the last two years, Sharma says he has come to realize that the state of HIV/AIDS treatment and therapies in Kashmir is lagging behind other Indian states. Here, treatment facilities are few and far between, while social stigma and discrimination remain rampant.
Inconclusive Data Weakens Testing and Drug Therapy Treatments
While increased surveillance by a handful of nongovernment organizations and state hospitals has shown a rise in HIV positive cases in Kashmir, social stigma continues to prevent people from coming forward for voluntary testing and treatment.
“Many people living with HIV/AIDS hesitate to disclose their status due to fear of isolation and discrimination,” says Feroz Khan, a representative of Human Rights Law Network, HRLN.
For Abdul Hameed Zargar, the director of Sher-i-Kashmir Institute of Medical Sciences, SKIMS, the results of new on the ground research is troubling. Zargar says new numbers indicate that more people in Kashmir are HIV positive than previously thought while people are also more hesitant to come forward for testing.
“AIDS has assumed alarming proportions and right now 3 million people [in India] suffer from this socially stigmatized disease,” he says. “People aren’t coming forward. Unless and until stigma is over, we can’t get more people for testing,” he says.
SKIMS released the results of a recent testing study in June of 2010. Of the 1,141 people tested in the state of Kashmir, 26 tested HIV positive, indicating that as much as two percent of the population may be HIV positive. Other new data suggests that just over one percent of the population here is positive.
“Kashmir no longer stands immune to the menace of HIV/AIDS. With increasing globalization, frequent travel and change in social values the state is likely to witness an alarming rise in new cases unless a multipronged approach is undertaken to control the spread,” the SKIMS report concluded.
Dr. Mohammad Amin Wani, director of Health Services and the project director for the State AIDS Control Society, says that four districts in Kashmir have been badly hit by HIV/AIDS in recent years. “Most of the affected people are illiterate and poor, with [the] main route of transmission being sexual. Seventy percent of tested people fall within age group of 25–45,” he says.
But the increase in the HIV population here has done nothing to quell deep stigma surrounding the disease.
Sharma says discrimination motivated him to work for betterment the HIV positive community in Kashmir. Since his diagnosis, Sharma has become a master trainer with National Community Upliftment Mission and the Global Fund for AIDS, Tuberculosis and Malaria. In this role, he trains others about technical and emotional aspects of undertaking HIV/AIDS counseling.
Sharma also recently formed the Jammu and Kashmir Network of People Living with HIV/AIDS to counsel and assist HIV positive people in the state. Less than 100 people are currently registered with the network. Sharma says his network has become a vital resource for HIV positive people here, where access to modern drug therapies is scarce and stigma still prevents quality care.
Sham Lal, 50, is a member of the network. He tested positive in 2002.
“For first few months, I faced immense problems. My wife abused me when she came to know about it. Even my office where I had put in 25 years of service showed me the door,” Lal says.
Lal, a father of three children, was soon disowned by his family. “When I was detected HIV positive, I thought my life was over. Due to stigma and lack of awareness I didn’t know what to do. It was after six years I finally came to know about ART treatment and went for it”, says Lal.
He has been on antiretroviral therapy, ART, since March of 2008.
Sharma says increasing awareness about the availability of ART is priority number one.
According to figures from Sharma’s network, the HIV positive population in Kashmir is estimated to be about 10,000. Sharma says just 70 people in the entire state are currently undergoing any drug therapies. However, records from the state Department of Health contradict those numbers. That state has registered 2,222 HIV positive people in Kashmir. Of those, state records indicated that nearly 25 percent, 525 people, are currently taking advantage of drug therapies.
While neither number is likely accurate, there are only two ART centers operating in the state of Kashmir. The lack of additional facilities forces patients from many districts to travel long distances to receive their medicine. Antiretroviral therapy requires fierce consistency in order to remain effective. As a result of the distance, many patients drop out of the ART regimen.
“Patients come to [the] ART center every month for medicine or treatment. Those who come from far-off areas face problems on account of transportation. There is no support system. As [the] treatment date is fixed, they’ve to wait for their next turn if they [arrive] late,” Sharma says.
If someone fails to receive their medicine on the correct date, some members of Sharma’s network admit to shopping for their drugs on the black market, but most say they cannot afford that option. “Consequently, they quit medicines and [the] first line of treatment fails,” Sharma says.
Shakeel Ahmad Mir, an HIV positive youth, says last month he failed to reach one of the ART centers in time on his assigned date. He missed his treatment.
“Drugs aren’t much available in our state,” Mir says. “Care of HIV infected people is the most challenging aspect.” Mir says while he struggles with social stigma and access to his medicines, he believes a larger stigma is attached to women who are HIV positive, making them even more reluctant to come forward.
Discrimination Seen as Major Factor Inhibiting Care
Anjum Shaheen, a social activist says people living with HIV face discrimination at all levels— employment, education, confidentiality, blood safety, freedom of movement, refusal of care and access to treatment. “[The] level of discrimination is so high that they are rendered helpless,” he says.
Shaheen says discrimination toward HIV positive women is often worse here. Several recent acts of discrimination against HIV positive women in local villages and hospital were registered with the new local Network for People Living with AIDS. In two villages in Jammu, “HIV” signs were posted on the front doors of all known HIV positive women. In one local hospital, Sharma says his network is actively fighting a case of discrimination that took place in a local hospital.
Sharma says a new mother approached the network for help earlier this summer. Her husband had tested HIV positive and passed away just a few days later. The woman, who declined to be interviewed, is also positive.
Sharma says when she was admitted to the local hospital she was isolated from her baby and “HIV Patient” was written in bold letters on her admit card. What’s more, Sharma says nurses failed to properly attend to her newborn child per National AIDS Control, NACO, guidelines. Hospital authorities denied knowing that the patient was HIV positive, despite the fact it was noted on her chart.
Most troubling for HIV/AIDS advocates here is the lack of legal support for HIV positive people who suffer discrimination. Professor Imtiyaz Ali, the dean of medical faculty and head of the Department of Community Medicines at SKIMS, says no comprehensive law dealing with the treatment or discrimination of HIV/AIDS patients currently exists in India. “Though a bill has been drafted it has yet to be seen in Parliament,” Ali says. “In most countries HIV/AIDS falls under national disabilities legislation.”
Ali says he favors coining new terminology to deal with both the medical and social aspects of HIV. “[A]lot of discrimination and stigmatization continues. HIV shouldn’t be treated as medical disease, but a socio-medical disease,” he says.
