Aid paid, zero for AIDS

While patients are discriminated, condemned and left to their fate, the AIDS awareness campaign is a catchword that means nothing, even in public hospitals, despite millions being spent on government-sponsored programmes

Farah Aziz Delhi, HARDNEWS

A debate is raging on the number of HIV/AIDS patients in India. It could be anywhere between 5.7 or 2.5 million. However, these are just numbers. Somewhere, we forgot to talk about people. Issues of injustice and discrimination against the counted ones are often neglected.

Sadanand (name changed), 40, can’t 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. Why? He was HIV positive.

His travails lasted for almost a year. On August 8, 2006, Sadanand visited the Guru Nanak Hospital in Delhi, where Dr B Ghosh advised him an immediate operation to save his eyesight. As a date for the operation was being fixed he 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 come back after a few days.

Consequently, when he went to the doctor on August 15, he was kept waiting for hours. He was asked to come after 15 days. A desperate Sadanand visited the doctor again on September 1. He told the doctor that he was being discriminated because he is HIV positive. At this, the doctor warned him not to visit him again as he could infect other patients. However, Dr Ghosh finally agreed to an operation, scheduled for September 25, after Sadanand threatened to file a police report.

On the day of the scheduled operation, Sadanand waited outside the operation theatre the entire day. At around 5 pm, Dr Ghosh declared that he would not conduct the operation.

Sadanand gave up and went for private treatment at Shroff Hospital, Daryaganj, in New Delhi. The operation was not entirely successful since by then it was too late. Sadanand can now see partially with his right eye, his left eye lost forever. He had to pay Rs 16,000 for his treatment at Shroff Hospital. He works as a counsellor for voluntary organisation, his monthly income is Rs 8,000, he lives in a rented flat, looks after his mother and spends at least Rs 2,000 a month on his 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. So he approached the NHRC as the last resort and got a case filed against Dr Ghosh on October 26, 2006, the receipt for which (Registration number 3006/30/2006-2007/OC) he got on December 15. 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. He gave me a vague assurance that he will look into the matter, and that he had asked his personal assistant to talk to the doctor,” says Sadanand. He 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 my 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 of blatant victimisation.” Ironically, Sadanand was the first HIV positive person to have been registered for free medication under the HIV/Aids programme of the government of India.

Another case is that of Savitri (name changed), 38, a housewife based in Nehona in Bihar. 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 been registered for — urine, stool, blood and ultrasound tests, 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. 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 a sexually transmitted disease (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 informing her earlier. The doctor refused to take the vaginal sample and asked Savitri to get an Elisa test done.

After examining the report, which declared Savitri positive, the doctor refused to treat her and referred her to Dr Ravindran. He recommended fresh tests; 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 again go to the doctor who had rejected her. Losing all hope and heavily in debt, Savitri and her husband returned to their home in Nehona in, Bihar.

Contrast this human tragedy to the lavish financial reality of the HIV/AIDS programme in India. Among the major national health programmes, finances 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 prevention and awareness. 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 is — Are these massive expenditures and efforts towards prevention, and especially awareness, fulfilling their objectives? Especially when doctors, and that too of public hospitals, discriminate against HIV positive or AIDS patients? There must be hundreds of cases similar to those of Sadanand and Savitri. Christy Abraham, head of ActionAid's HIV and AIDS project in India, sums it up. “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,” she says.

PK Hota, former secretary in the Union ministry of health, admits that NACO may have failed to utilise its funds properly. He claims that they 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, how come the doctors have remained so unaware? What is the point of even doubling the funds allocated to the HIV/AIDS programme if doctors and public hospitals continue to be so brazenly insensitive and inhuman?