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Aid Paid Zero For AIDS

By Farah Aziz

09 September, 2007
Countercurrents.org

The debate on numbers is still raging in India that whether it is 5.7 or 2.5 million suffering from HIV/AIDS. Scholars, activists, statisticians, and media all frenzied about the figures. Somewhere it is missed that while we talk of HIV/AIDS, we talk of people and not just numbers. Issues of injustice and discrimination against these of counted and recounted people from among us are often neglected.

Sadanand, 40, cannot see with his left eye - the result of a sudden rise in blood pressure. When he approached a hospital in Delhi, he was denied operation as he was HIV positive.

His travails lasted for almost a year. On August 8, 2006, Sadanand visited the Guru Nanak Hospital, where Dr B Ghosh advised him for an immediate operation to save his eyesight. A date for the operation was being fixed while Sadanand informed that he was HIV positive, and showed his prescriptions to the doctor, thinking that his HIV positive status should come for consideration in his treatment. Dr Ghosh asked him to visit after a few days.

When Sadanand went to visit the doctor again on August 15, he was kept waiting for hours, although Dr Ghosh attended many other patients who had come before him. This time, the doctor again asked him to come in about 15 days. Meanwhile, Sadanand's vision had already deteriorated to an extent that he was almost unable to see.

A desperate Sadanand visited the doctor again on September 1 and accused the doctor of trying to defer the operation and discriminating against him because he is HIV positive. At this, the doctor warned him not to come to the clinic again as he could infect other patients. Dr Ghosh finally agreed to an operation, scheduled for September 25, after Sadanand said he would file a police report.

On the day of the scheduled operation, Sadanand had to wait outside the operation theatre the entire day. At around 5 pm, Dr Ghosh declared that he would not operate on Sadanand.

Sadanand gave up and went for private treatment at Shroff Hospital, Daryaganj. The operation was not entirely successful as by then it was too late. Sadanand can now see only partially with his right eye, his left eye lost forever. He had to pay Rs 16,000 for his treatment at Shroff Hospital. His monthly income is Rs 8000, and he lives in a rented flat, looks after his mother and spends at least Rs 2000 a month on his second line treatment.

An agitated Sadanand filed an FIR against Dr Ghosh. The police, instead, sent him to the National Human Rights Commission (NHRC), saying that cases of discrimination by government officials do not fall under their jurisdiction. Sadanand approached NHRC as the last resort and got a case filed on October 26, 2006, but was not given any receipt. It was only by December 15 that he got the registration number of his case –– 3006/30/2006-2007/OC. On February 1, 2007, the NHRC informed Sadanand that his case has been referred to the then health secretary, Delhi, DS Negi for further action.

"As I presented my case before Negi, his attitude seemed dubious, as he only gave me a vague assurance that he will look into the matter, and that he had asked his personal assistant Dinesh to talk to the doctor," Sadanand narrates.

Sadanand overheard the conversation between Dinesh and Dr Ghosh, which was quite interesting. According to Sadanand, Dinesh spoke about his colour television, which was now quite old, and has not been replaced yet! In the entire conversation, Sadanand's name was not even mentioned once, he claims!

Sadanand kept on visiting the secretariat. Twice, he claims, he was wrongly informed that the secretary was not present, although Sadanand could see him sitting inside. After about four or five futile visits, Sadanand finally got to meet Negi on July 25, a day before he was transferred from the department.

"I have accepted the fate," Sadanand says. "I know the new secretary will also show the same attitude and nothing will be done. Dr Ghosh will never be convicted because he is a government official. Who can touch him? My health is more important to me, I have to fight for my living now, not the case."

Ironically, Sadanand was the first HIV positive person to have availed of the free medication under the HIV/Aids programme of the Government of India.

The case of Sridhar, 45, is similar. He started getting anti-retroviral (ARV) treatment from June 2004 at the Ram Manohar Lohia Hospital (RML) under Dr SC Sharma. Sridhar was already suffering from multiple pains and had also developed piles.
Initially, he was put only on medication but when there was no improvement; Dr Sharma referred him to Dr Durga in the surgery department. After knowing the HIV status of Sridhar, Dr Durga denied to operate on him and further recommended costly medicines.

When the pain became unbearable and the pile had grown substantially large, Sridhar went to the Deen Dayal Hospital (DD), yet another public hospital.

After a series of tests, the doctors at DD recommended immediate operation. However, Sridhar was refused treatment because according to his earlier prescriptions, he was already receiving treatment at RML, and the medical staff at DD did not want to interfere as this was "unethical". Sridhar's case was repatriated to RML, and to the same Dr Durga.

This time, she agreed to an operation and asked Sridhar to come on ­­­­­­­­June 2, 2007. On June 2, the doctor again refused to operate and put a band on the pile instead. A desperate Sridhar insisted that he be operated upon, and managed to get a date.

Sridhar was finally operated on July 30, 2007, but he claims the pile is still as big and painful as before. When he got no relief, he visited his doctor yet again. "This time," he says, "She blasted me and said this is the most I can do for you. You are HIV positive and you should be thankful that I even considered you. Other doctors would have driven you away."

Today, Sridhar walks with a limp, because of the pile. He cannot go to any other public hospital because of the 'ethical' problems of the medical staff, and he cannot go for private treatment because he earns Rs 150 a day by selling water, looking after his HIV positive wife and a young daughter, lives in rented house and has to buy costly medicines almost on a daily basis.

Another case is that of Savitri. After being suspicious of her symptoms, she visited a doctor in Safdarjung Hospital. She complained of recurrent fever, headache, irregular menstruation and weight loss. The doctor recommended a list of tests ­­–– a urine test, a stool test, a blood test as well as an ultrasound, and asked Savitri to get them done from private pathological labs, as the handwriting of the lab attendants in Safdarjung Hospital was illegible, and the reports unreliable.

So Savitri got the tests done from outside. They cost her around Rs 2,500. "I thought if I disobeyed the doctor's orders I too would get AIDS like my husband, who did not go for tests even after the doctors told him to," she says .

After submitting the test reports, Savitri complained of vaginal irritation. The doctor suspected sexually transmitted diseases (STD), and asked Savitri to lie down so she could take her vaginal fluid. During the conversation, Savitri disclosed that her husband is HIV positive. The doctor immediately pulled back her hand and scolded Savitri for not telling her sooner. The doctor refused to take any vaginal sample and asked Savitri to get an Elisa test done.

After seeing the report, which declared Savitri positive, the doctor refused to attend to her and referred her to another doctor, Dr Ravindran. He recommended fresh tests so Savitri had to spend another Rs 2,000. It was only later that Dr. Ravindran got to know about Savitri's travails and accused the earlier doctor of discrimination. This, however, made things worse for Savitri, as Dr. Ravindran went on a long leave, and Savitri had to get further treatments from her earlier doctor. Losing all hope and heavily in debt, Savitri and her husband returned to their home in Nehona district, Bihar.


Among the major national health programmes, financing for HIV/AIDS is second only to malaria. It has been occupying a prominent place since the beginning of the Ninth Five Year Plan –– 1997. By the end of the Plan, the financial allocation for the HIV/AIDS programme was almost equal to that of the programme on Malaria eradication. While the total outlay on Malaria eradication has been Rs 9,630 million during 1997-2002, that of the HIV/AIDS programme has been Rs 7,280 million. According to the ministry of health, over the years, the financial allocation to the HIV/AIDS programme has recorded the highest growth (approximately 100 per cent rise during 1997-2002) among all national programmes.

Nearly 75 per cent of the total funds procured by the National AIDS Control Organisation (NACO) is officially diverted to the prevention and awareness part. Rs 40 billion has been spent in the National AIDS Control Programme or NACP-I and NACP-II since 1998 towards prevention and awareness alone. A budget of Rs. 11,585 crore has recently been announced for NACP-III, of which a little over 75 per cent is towards prevention measures. (See table)

Besides the major sources, there are several smaller organisations, national and international, involved in awareness-building and other prevention mechanisms through internal funds.

The question that arises is – are these expenditures and efforts towards prevention, and especially awareness, worth it? Especially when it is the doctors, and that too of public hospitals, who discriminate against HIV positive or AIDS patients? There must be hundreds of cases similar to those of Sadanand, Sridhar and Savitri. Christy Abraham, head of ActionAid's HIV and AIDS project in India, is very clear. She says, "NACO's approach towards HIV/AIDS is narrow. We don't need to take AIDS as an enemy to combat. The focus should be on combating discrimination."

PK Hota, former secretary at the ministry of health, admits that NACO may have failed to utilise its funds properly, although he claims that we have succeeded on the awareness front.

When a major chunk of the AIDS funds have gone to awareness generation, at the cost of care and treatment, it should be a wonder how our doctors have remained so unaware. What is the point of even doubling the funds allocated to the HIV/ AIDS programme if doctors remain insensitive?

 

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