Indian legislators lost an opportunity on Tuesday to really make a difference to thousands of people living with HIV and AIDS in the country. The Rajya Sabha passed the HIV/AIDS bill intended to ensure that people afflicted with HIV and AIDS get treatment and equal rights when it comes to admission in educational institutions and jobs. Howeve, the bill continues to promise access to treatment to HIV positive people only “as far as possible”.
Even though Union Health Minister JP Nadda promised to implement a “test and treat” policy where all individuals who have tested positive for HIV infection will receive antiretroviral drugs in India, it has remained a verbal commitment. Civil society groups feel that the government has given itself an easy escape from its duty to provide free treatment to all.
At present, not all persons diagnosed with HIV are eligible for free antiretroviral drugs. Only patients whose CD4 count is less than 250 units are provided with free treatment under the programme run by the National Aids Control Organisation or NACO. The CD4 count is a laboratory test that measures the number of CD4 cells in the blood. The lower the CD4 count, the more advanced is the infection. “Now, patients with CD4 count less than 500 are given free treatment,” JP Nadda said in the upper house of Parliament.
Nadda’s assurance of providing treatment to all patients is a delayed one. The World Health Organisation in September 2015 had recommended that patients should be given antiretroviral drugs immediately after they are diagnosed with HIV. It took the government more than 17 months to act on the recommendation. Doctors say that patients do better when they are given the drugs earlier. However, repeated shortages of medicines make it difficult for patients to get required treatment on time.
“Indian government has global as well as domestic fund to provide treatment to all but there are regular stock outs and shortage of drugs across the country,” said Firoze Khan, a national coordinator of National Coalition of People Living with HIV.
Khan believes that NACO’s method of procurement and its supply chain for the drugs is what really causes the drug shortages that have weakened India’s HIV control programme. Scroll.in has recorded several instances of stock-outs of antiretroviral drugs in different parts of India. Earlier this year, HIV medicines for toddlers have been unavailable across India leaving parents of HIV positive children struggling to cut adult doses of HIV tablets – an unreliable and unsafe method of treatment.
Civil society groups in India working with HIV patients are displeased with both the BJP government for the weak bill and with the opposition for not resisting the dilutions enough. “The minister [JP Nadda] has completely fooled the house and people,” said Loon Gangte, regional coordinator for South Asia at the International Treatment Preparedness Coalition, an international agency that works for HIV/AIDS patients. “There is no statutory meaning to his promise. Tomorrow, when patients won’t get free drugs, the government will tell that they did ‘as far as possible’.”
Several members of parliament including Jairam Ramesh and V Vijaysai Reddy had moved an amendment in the floor of the house to remove the caveat “as far as possible” but later withdrew it. The caveat “as far as possible” is also applicable to access of diagnostic facilities to a person looking to confirm his or her HIV status.
Non-governmental organisations working with HIV patients said that the number of testing facilities need to be increased to actually diagnose all those with the infection and get them on the right treatment as soon as possible. “We needed more facilities, so hidden cases can be found and put on treatment,” said a senior doctor from a Mumbai hospital.
Being alive is priority
Gangte said that HIV positive individuals are not worried about discrimination in jobs and education as much as they are worried about “being alive”. Gangte and his colleagues said that without regular and uninterrupted access to the antiretroviral drugs, talking about discrimination is a futile exercise. The bill passed in the upper house lists the various grounds on which discrimination against HIV positive people is prohibited. The pre-requisite of undergoing a HIV test for the purpose of employment or education is prohibited under the bill.
“This bill is just a piece of paper for us,” said Paul Lhungdim from Delhi Network of positive people. “It is not protecting my right to my life.”
NGOs working for HIV patients feel that the bill is vague about the role of the ombudsman to oversee violation of the new law. In its present form, the bill allows state governments to decide operational protocols for the ombudsman. Nadda has promised that his ministry will formulate guidelines for the appointment and procedures with respect to the system of ombudsman.
“We have to wait for the rules to understand the power and the procedures to be followed to register a complaint with the ombudsman,” said Gangte.
Having been cleared by the Rajya Sabha, the HIV/AIDS bill will now be tabled in the Lok Sabha.