When Manu (name changed to protect his identity), 8, broke his arm in July, his neighbour Hari Shanker accompanied him and his mother to Safdarjung hospital. “We were told he had multiple fractures and needed surgery. Manu was admitted to hospital for surgery and made to undergo several tests, while we were given a list of medicines and other things needed for surgery,” said Shanker, 41, a volunteer with The Delhi Network of Positive People, a network that supports people living with HIV, the virus that causes AIDS.
Everything went smoothly till Shankar told the doctor that Manu was HIV positive. “Suddenly, things changed,” recalls Shanker. “We were told that the surgery had been cancelled because there was no need for it. The doctors said Manu could be treated in the hospital’s out-patient department (OPD),” he added.
“Though he was in pain, they were ready to discharge him the same night, but we persuaded them to keep him overnight. Manu was sent home the next day. We finally had to take legal recourse to get the boy operated,” said Shanker.
Safdarjung Hospital’s Medical Superintendent Dr BD Athani insists that the hospital does not turn away people just because they are HIV positive. “The surgery must have been cancelled because there was genuinely no need for it. It’s unlikely it was because of the boy’s HIV status as many HIV-positive people are routinely operated on in our hospital. There is a set protocol as the medical staff takes additional precaution while treating people with blood-borne infections,” he said.
“Discrimination due to fear of infection is a reality. It may not be as bad as it was a decade ago when people would not even consider disclosing if they were HIV positive, but life still is not easy for us,” says Pradeep Dutta, president, Nai Umang Positive Welfare Society, who was diagnosed with HIV in 2000.
Though cases of discrimination are rare, the HIV/AIDS Bill, which is expected to be tabled in Parliament in this Winter Session, is expected to ensure it ends completely. The key provisions of the Bill are to include the private sector in the anti-discrimination law; right to informed consent before testing, treatment or research; right to confidentiality; access to treatment; risk-reduction strategies and the need for a health ombudsmen which will be a quasi-judicial authority empowered to address violations of healthcare provisions and to pass orders to address complaints.
“The only thing that is holding the Bill back is the political will,” said Anjali Gopalan, founder and executive director, Naz Foundation (India) Trust, a NGO that is working to get the Bill tabled for seven years.
India has successfully reversed the epidemic, with the numbers coming down marginally even though people are living longer because they are accessing free treatment. In India, 1.3 lakh people got infected with HIV in 2012, taking the count to 2.1 million. “An estimated 10 lakh people need Antiretroviral Therapy (ART), which is given free under the government programme, but only about half the number access it,” said an official who works for India’s National AIDS Control Organisation (NACO), which tracks and controls HIV in India.
All pregnant women who deliver at a clinic or hospital are tested for HIV, including in India, and are given a drug called Nevirapine that more than halves mother-to-child transmission. A single 200 mg-oral dose given to the mother during labour and a single 2 mg/kg dose given to the newborn at 48 to 72 hours after birth halves infection even if the mother and child are not on treatment.
This year, the announcement that a baby girl born with HIV in the US was cured using a combination of three widely available HIV-fighting drugs gave hope to millions living with the infection. The Mississippi girl, who was declared “functionally cured” by US doctors on Sunday, is now three years old and has been off medication for a year and a half. The only other person cured is Timothy Ray Brown, the “Berlin patient” who became Aids-free after undergoing a stem cell transplant from a donor with a rare genetic mutation that resists HIV infection.
In a world where an average drug developed by a pharmaceutical major costs at least US $4 billion to as much as $11 billion, a cure using existing and affordable drugs immediately makes it possible for the treatment to be standardised and used to save newborns across the world.
“New infections may be coming down but HIV has not been wiped out. We want the Bill to be tabled in the Rajya Sabha in the coming session. This Bill is based on rights and treatment is every HIV positive person’s right,” said Anand Grover of the Lawyers Collective.