No aid for HIV positive ‘outsiders’

No aid for HIV positive ‘outsiders’

Preetu Nair
preetu_nair@gomantaktimes.com

(This article appeared in GT Weekender, Panjim edition dated February 12,2006)

If you are a poor HIV/AIDS patient in Goa and do not have a ration card, it will be a matter of time before your family gets your death certificate. Harsh! but shockingly true. The Goa Medical College has been refusing to supply antiretroviral therapy (ART) drugs to non residents or those who have no proof of residence in Goa, in gross violation of NACO guidelines and the fundamental right to life, Preetu Nair finds out how your ration card becomes your life saving drug.

PANJIM: The outsider versus insider battle has been dragged even in to the Goa Medical College, where HIV patients without rations cards or proof of residence are refused ART life sustaining tablets. Those who can afford to it can buy it privately, but what about the hundreds of poor HIV patients who have a right to life, but are expected to show proof of living in Goa, to get that right. Check out these cases:

Positively speaking, we don’t treat ‘outsider’ HIV patients

Lata, an HIV positive is staying in Goa since last 30 years and had a ration card. But as bulldozers razed her house in Baina on June 14, 2004, she lost her ration card. As a result she has become an outsider in Goa where she was born and brought up. Recently, doctors at Goa Medical College (GMC) put her on Antiretroviral therapy (ART) but refused to give her the free medicine because she didn't have a ration card. She explained her problem but to no avail. Her problem is dual: on one side she is denied medicines because she doesn't have a ration card, while on the other hand government authorities refuse to give her a new ration card, despite several applications for the same.

The ART of refusing aid

As the CD4 count machine (a blood check-up for HIV/AIDS patient which has to be done every six months) was dysfunctional in GMC in October and November 2005, Shanti was advised to take her critically ill husband to a private hospital for CD4 count. The test revealed that his CD4 count was very low at 111 (normal is 200). The couple immediately rushed to GMC to start ART but was denied the tablet because they are from Karnataka and not from Goa. When they argued that ART has to be given for free to anyone who has HIV/AIDS irrespective of the state to which they belong, they were told by doctors at GMC that they have orders to give free ART tablets only to Goans. Another doctor added that as the CD4 count was done at private hospital, they would not receive any medicine from GMC for free.

Want a tablet, go back to your village

A 32-year-old man from Nepal, who came to Goa three years back to work as a labourer at the construction site, was detected to be HIV positive in 2005. He used to have high fever and felt weak. He went to GMC where he was tested and found to be HIV positive. He was regularly denied basic drugs. In January 2005 a CD4 count was done at GMC and he was counseled to start. But when he went to take his free ART tablets, he was asked to go back and take the medicine free from his village. Reason? He is not a resident of Goa. He cried and begged but in vain.

Some free lunches, but no free tablets

Reshma, 25, purchased ART tablets for one and half year when she was pregnant to avoid HIV/AIDS transmission from mother to child. This was two and half years back, when ART tablet was not given free of cost at GMC. However, she was forced to stop the medicine later as she couldn't afford it. However, when she got a CD4 count done recently it was found that her CD4 count had gone down and she was put on ART. But when she went to GMC for the medicine, she was denied tablets, as she couldn't produce proof of residence.

Believe it or not! From January 2006, if you don't have a ration card in Goa , you will be denied ART, which is considered to be an elixir of hope for HIV/AIDS patients; especially symptomatic patients with CD4 count less than 200 by GMC. ART drugs, while they do not cure HIV, can, if successfully administered, slow and even virtually stop the proliferation of HIV in the body. This reduces susceptibility to other diseases and allows for longer and better quality of life. Though available in the market, the drugs cost anywhere between Rs 2500 to 5000, thus making it unaffordable for the poor.

This is happening even as Chief Minister of Goa, Pratapsing Rane in his message in Goa State AIDS Control Society's book HIV/AIDS in Goa, Situation and Response 2005-06 has said, "My government is fully committed to prevent the spread of HIV and to provide care, support and treatment to people living with AIDS who access our health services and to mitigate the impact of theepidemic on communities".

It just doesn't matter that they live, work and love Goa. What matters is that they don't have a ration card or an electoral card! All this in complete violation of Article 21 of the Indian Constitution, which recognizes the right to life as a fundamental right and also imposes an obligation on the State to safeguard the right to life of every person: "The
Government hospitals run by the State and the medical officers employed therein are duty bound to extend medical assistance for preserving human life". Failure on the part of a Government hospital to provide timely medical treatment to a person in need of such treatment results in a violation of his right to life guaranteed under Article 21.

Dr JJ Dias, Project Director, Goa State AIDS Control Society (GSACS) admitted that many NGO's working with HIV/AIDS patients have complained that the patients are asked to show proof of residence in order to get free ART drugs. "But this is done to ensure adherence from the patient, so that they don't leave the treatment mid-way. Otherwise, I don't think there is any reason to refuse free ART drugs as we want more and more HIV/AIDS patients to take the medicine," he said.

But isn't the right to life and health a fundamental right guaranteed to every person living in India and is non-negotiable? "That is true. We can't deny the drug to anyone. But our focus is on adherence," added Dr Dias. Asha Vernekar, NGO Advisor, GSACS also admitted that she had received complaints about patients being denied ART drugs because they don't have a ration card. "We have also followed up with GMC," she added.

This is happening even as National AIDS Control Organization (NACO) envisions an India in which every person living with HIV is treated with dignity and has access to quality care. However, many like Reshma and Lata are denied free ART drugs because they are "outsiders". This despite the fact that NACO made the promise: "one nation one resolve: we shall defeat AIDS together" and for the same launched free ART drugs to all HIV/AIDS patients in state at GMC in March 2005, to provide universal access to HIV care.

"It is done to ensure that there is continuity of the medicine. What if they stay in Goa for few months and go to their native place and discontinue the medicine? By and large medicines are not denied to patients," added Dr Rajan Kunkolienkar, Medical Superintendent, Goa Medical College.

But can a patient be denied medicine on the presumption that he may stop taking the medicine in the near future? Well, no one seems to have the answer!

(Some names have been changed)

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Words hurt more that the disease. Here is a sample of how insensitive medical professionals in government hospitals are when they deal with HIV positive patients.

“Leave your HIV positive husband”

• A 25-year-old local boy was admitted in November in the General ward of GMC because his CD4 count was very low and he required immediate medical attention. In the presence of relatives he was given a bed, but in the night when the relatives left, he was vacated to a dark laboratory and made to sit there alone. Scared and worried, he called his relatives for help. They intervened and he was got medical attention but not before his wife was advised by the doctor to leave her HIV positive husband.

“You are HIV positive, we can’t give you a receipt for a CT scan”

• When Shakeela took her 27-year-old husband, who is suffering from HIV/AIDS to GMC in December, they were asked to go to Hospicio Hospital, Margao. At Hospicio, she was charged Rs 200 for CT scan. She paid the money but didn't get a receipt. When the couple insisted, the staff insulted them saying they are HIV positive.

“Hey get out of the line, someone may get the disease”

• Leena and Manoj had left home in Maharashtra and settled in Goa, far away from friends and relative, because they were regularly ridiculed by everyone for
  being HIV positive. But Leena got a greater shock when she went to GMC and was ridiculed by a nurse, who said, "Hey, you are HIV positive, just get out of the
  line or someone may just get the disease." She is yet to overcome the embarrassment and agony she experienced then.

This is happening even when it is openly agreed that maintenance of confidentiality of an individual's health status is one of the cornerstones of public health. Not only does the principle rest on human rights norms of autonomy and respect for privacy, but it has also been viewed as crucial to encouraging those most at risk to come forward for HIV testing, counseling and clinical attention.

Even NACO states, "All Government hospitals have been instructed to admit HIV/AIDS cases without any discrimination. They have to be managed in the general wards of the hospitals along with other patients except cases having sputum positive (open pulmonary tuberculosis) and when the patient's immunity is completely diminished. This is required to protect him from other infections and thus he needs to be managed in a separate room. Any special marking or board near the beds for HIV positive patients is discouraged".

Only noise, but no CD machines

CD4/CD8 count facility was established at GMC in July 2001. On an average 6 to 8 patients are screened everyday for CD4/CD8 blood count facility to verify and assess the immune status of a HIV patient. In 2005 upto September at least 449 people went for CD4/CD8 count. However, in October and November, the CD4 machine was not working and due to this few patients who could shell out Rs 1000 plus went to private hospital, while many couldn't do the test.

Dr Dias admitted that there was a problem sometime back. "The problem is that at the moment we have just one CD4 machine and it does give trouble. At the moment we have three option: have another CD4 machine, outsource the tests or purchase CD4/CD8 kits so that it can be used as substitute," added Dr Dias.