Ten-year-old Ankur Bakshi who was born to HIV positive parents has been on first line HIV treatment since 2009. He has been going to the anti-retroviral treatment centre at Lala Ram Sarup TB Hospital in South Delhi every month to get pills that he needs to take twice a day. The shy child is a bright student and part of his school football team.
The boy’s mother Arti Bakshi is now apprehensive about how their lives could be affected by the new HIV/AIDS bill, which is scheduled to be tabled in the ongoing Parliament session. Bakshi has been informed by health activists that if the bill is passed in its current form, her family’s supply of medicines could be threatened. The current bill says that the government will provide treatment only “as far as possible” – a clause that health activists have been protesting since the draft bill was released in 2014.
Since the antiretroviral programme was launched in 2004, the National Aids Control Programme has assured free treatment for all HIV positive patients.
“Both my sons are HIV positive,” said Bakshi, describing how her entire family makes the hour long journey from Bhati Mines where they live to the Lala Ram Sarup TB Hospital every month. “Four of us depend on antiretroviral therapy given by LRS [hospital] to keep living. We can’t afford the medicines for all of us.” Bakshi’s husband is the sole breadwinner of the family. He works as a driver for a taxi company and earns between Rs 10,000 and Rs 12,000 per month.
The Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome (Prevention and Control) Bill, 2014 was introduced in the Rajya Sabha on February 11, 2014 by the erstwhile health minister Ghulam Nabi Azad. The bill seeks to prevent and control the spread of HIV and AIDS and prohibits discrimination against infected persons.
An HIV infection can now be effectively controlled with anti-retroviral therapy and many people live for many years without developing AIDS, which is an advanced form of the infection where the body’s immune system is highly compromised and is often fatal.
The HIV/AIDS bill was first submitted to the National AIDS Control Organisation in 2006, and has since been shuttled between the health ministry and law ministry. In October this year, the cabinet of the current government approved amendments to the bill and it is now pending approval in the Rajya Sabha.
Clause 14 (1) of the bill describes measures to be taken by central and state governments for treatment and prevention of HIV infection that include providing, “as far as possible”, diagnostic facilities relating to HIV or AIDS and anti-retroviral therapy and opportunistic infection management to people living with HIV or AIDS.
Patients’ rights activists protested this clause for the past two years. “This is a truncated bill,” said Tripti Tandon of the HIV/AIDS unit of Lawyer’s Collective. “Instead of seeing treatment of HIV as a right of the patient, Clause 14 (1) gives an opening to the governments to evade any responsibility to treat patients. This is a space to get out of any accountability.”
Tandon said that the single phrase “as far as possible” renders the bill toothless.
While the National Aids Control Programme was established in 1992, the country was unable to provide free treatment for HIV patients. The “cocktail therapy” – a combination of anti-HIV drugs – cost an astronomical $10,000 per year and was prohibitive for use in India. After drug manufacturer Cipla started offering these drugs for $350 per year the Indian government launched a programme to provide this therapy to HIV affected people.
One of the stated objectives of NACO since its inception is “Comprehensive care, support and treatment to all persons living with HIV/AIDS.” This is commitment to universal access to treatment by all Indians. “As far as possible” falls way short of the 24-year-old commitment of the government of India.
“The bill should be safeguarding the patients but it is designed to save inefficiencies of the government,” said Paul Lhungdim, president of the Delhi Network of Positive People, which is a HIV positive patients group. “We wanted a bill to strengthen the existing system, but it will end-up justifying already existing shortcomings.”
Shortages of HIV medicines are all too common in India. According to a joint study by the Delhi Network of Positive People and MSF Access Campaign, Delhi had 32 episodes of shortages and stock-outs of medicines in nine ART centres. The study was conducted for the period from June 2012 to February 2015. This means that 32 times in less than three years, patients either went back without any medicine or with less than the designated one-month supply. There were 10 episodes of stock-outs of diagnostic kits.
Even with these repeated failures, Delhi is better off than any other parts of the country.
“Cities like Delhi do not face as many challenges as other parts,” said Dr Smarajit Jana of Durbar Mahila Samanwaya Committee in West Bengal. “Children dying of AIDS due to unavailability of medicines is common.”
In Chhattisgarh, a large number of children have been found resistant to first line treatment of anti-HIV drugs, and stock-outs have also resulted in many children dying, as Scroll.in reported earlier this year. In Maharashtra, antiretroviral treatment centres reported increased the number of dropouts of the treatment.
A study by the Centre for Advocacy and Research among 1,547 patients in 13 districts in five states – Maharashtra, Karnataka, Tamil Nadu, Telangana and Andhra Pradesh – found that 18.8 % of patients received insufficient quantities of drugs even after two or more visits to ART clinics. According to the study released in May this year, 13% of the patients did not receive drugs at all.
The Durbar Mahila Samanwaya Committee has been working in red-light areas of West Bengal, including Sonagachi in Kolkata, for two decades to reduce HIV infection among sex-workers.
Samina Bibi, 27, suspects that she contracted HIV in her initial days of sex work in Sonagachi. “I came from Bangladesh 15 years ago,” she said. “I stopped soliciting without condoms after working for a year. Ten years ago I was detected with HIV infection. Since then I have been taking medicines from the ART centre. Whenever there is a stock-out, we fight as an organization and get medicines sooner than otherwise. This keeps me away from spreading the infection.”
If the viral load of an infected person is kept in check through antiretroviral drugs, then the person will be less likely to transmit it to others.
“We work with NACO, and under its programme we try to reach each and every sex-worker, encouraging them to use condoms mandatorily and get tested for HIV and co-infections,” said Jana. “As an organization we build pressure to give adequate treatment to all. “As far as possible” will become the easiest alibi for the government to not give treatment.”
The current bill limits even legal tools that patients have used so far.
“Cases have been filed under Article 21 of the Indian Constitution, which is Right to Life, which includes life-saving treatments,” said Tandon. “Now the cases will be filed under the new [law], the government will say that their commitment is only as much treatment as it can provide. This will be a big legal setback.”
Against all evidence
Despite all its shortfalls, the HIV/AIDS programme has made some gains. According to a NACO report in 2014 when it celebrated 10 years of the ART programme, deaths due to AIDS reduced by 29% between 2007 and 2011. The programme, NACO claims, has saved over 1,50,000 lives so far.
According to a senior NACO official who wished not to be identified, the main reason for government rigidity on holding on to the phrase “as far as possible” is financial constraint. “The government does not want to commit to cost burden for all patients in the country,” he said.
But NACO’s numbers suggest that the government’s could possibly drop. NACO’s report showed that the number of ART centres increased from 127 in 2007 to 355 in 2012. Testing facilities grew from 4,027 to 10,515 during the same period. NACO reported a 66% decline in new HIV infections between the years 2000 and 2015. With first-line treatment for an AIDS patient costing Rs 7,200 per year, this could amount to a substantial saving. The big question, however, is how expensive new drugs for HIV and AIDS treatment might become.
The “as far as possible” clause also absolves the government of its commitment towards providing second-line and third-line treatment for HIV positive patients. These two lines of treatment are given to patients who fail the first line of treatment for HIV and are more expensive at Rs 20,700 per patient per year and Rs 137,301 per patient per year, respectively.
“The government has no reason to run away from this financial commitment,” said Leena Menghaney, advocate and health activist. “In fact, keeping pace with international developments, we should expand the current programme to include opportunistic and co-infections.” Opportunistic infections, such as tuberculosis, that are arise due to lower immunity in a HIV positive person, are included in the new bill. Co-infections such as hepatitis B, which are contracted independent of HIV but can be accelerated due to lower immunity, are not covered by the bill.
Right now, a person’s access to treatment of opportunistic infection depends on the availability of drugs at the ART centre. Twenty seven-year-old Gurbinder is an HIV positive person who has been detected with a rare skin cancer called Kaposi Sarcoma – a result of his low immunity due to HIV infection. He has now been diagnosed with AIDS and he does not get proper treatment he could die.
Working as a guide in Delhi, Gurbinder earns between Rs 4,000 and Rs 6,000 a month. He is trying to raise Rs 2 lakh for his cancer treatment through charity websites. “I cannot go for the next round of chemotherapy if I don’t raise at least Rs 15,000,” he said. “If the government does not make it mandatory, people like me will never benefit. We will be saved from HIV, but would die of other diseases like cancer.”
Lhungdim of the Delhi Network of Positive People recalls when he contracted hepatitis C, a common co-infection of HIV. Treatment for hepatitis C ranges from Rs 18,600 in a government hospital to a few lakhs in private facilities. Lhungdim spent about Rs 5 lakh on his medicines. “It was collected by friends and many non-governmental organisations,” he said. “I had thought that the HIV community will be rid of these problems once the bill is passed. Organisations like Delhi Network of Positive People have been working incessantly for the HIV bill. But ‘as far as possible’ takes away all that we wanted. We feel we are back at square one.”
Names of some HIV positive patients have been changed to protect their identities.
Corrections and clarifications: This story has been edited to remove an error that misstated the percentage decline of new HIV infections.