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Solving the HIV/AIDS Puzzle: Indian Consensus

Fact 1: India has 2.4 million persons affected by  HIV virus and in need of constant medication, treatment and support.
Fact 2: In 2015 around 68000 people died of AIDS related causes nationally.
Fact 3: HIV treatment has progressed to a point where a person infected with HIV can stay healthy without the infection progressing to the AIDS stage.

On 11th April 2017, the Indian Parliament  passed a landmark bill titled the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014 or the HIV and AIDS Bill 2014.

The bill seeks to assure treatment to all patients without stigmatising them and for action in the event of denial of treatment.

There are approximately 24 lakh persons estimated to be living with HIV in India.  The prevalence of HIV has been decreasing over the last decade which is a heartening trend. However in India even today with all public and donor based efforts the percentage of people living with HIV (PLHIV) and  receiving anti-retroviral therapy (ART) treatment remains merely 28.82% against global percentage of 41%. Simply put, less than a third of all persons who require daily medication are able to access it. The Bill aims to correct this injustice through providing essential support through the public funded National AIDS Control Programme as a matter of legal right of the patient and thereby achieving the target of “Ending the epidemic by 2030” to meet Sustainable Development Goals set by the United Nations.

Need for legislative action. It goes without saying that to  reduce suffering and to support HIV infested persons in leading a dignified and a  better quality of life ought to be a major commitment for the public health system in all countries. Hence creating a legally binding rights based framework towards an effective HIV AIDS treatment  without stigma has become a common programmatic approach for governments world over.

”Today is a historic day because the government can now ensure better quality of life to people living with the virus or diseases.”: Mr J P Nadda, Indian Minister of Health and Family Welfare.

Salient provisions of the bill

  • Considering the taboo around the disease in our country, no person can be compelled to disclose his HIV status except with his informed consent, and if required by a court order.
  •  No person can be subject to an HIV testing or a medical treatment or a scientific research  without her informed consent to ensure confidentiality.
  • Requirement of an HIV testing  can not made a a pre-requisite for obtaining employment – in public or private organisation, or for  accessing health care services at a medical centre or for gaining admission to any educational institution or for renting a property.
  • The Bill lays down penal provisions for any discrimination practised against a person with HIV/AIDS and breach of confidentiality.
  • It also makes it obligatory for the Central and State governments to provide for anti-retroviral therapy (ART) and arrange for the management of risk reduction of vulnerable populations.
  • Cases relating to HIV positive persons shall be disposed off by the courts on a priority basis.
  • In any legal proceeding, if an HIV infected or affected person is a party, the court may pass orders that the proceedings be conducted (a) by suppressing the identity of the person, (b) in camera, and (c) to restrain any person from publishing information that discloses the identity of the applicant.
  • A person between the age of 12 to 18 years who has sufficient maturity in understanding and managing the affairs of his HIV or AIDS affected family shall be competent to act as a guardian of another sibling below 18 years of age.
  • Each state government is required to appoint an ombudsman to inquire into complaints related to the violation of the Act and the provision of health care services legally guaranteed under the legislation.
  • The ombudsman shall submit a report to the state government every six months stating the number and nature of complaints received, the actions taken and orders passed.

Major public policy issues and concerns regarding the current legislation have been highlighted. 

  • Discrimination versus Treatment.  Some activists believe that access to treatment—in terms of availability of both drugs and infrastructure—is more important for HIV patients than discrimination. The current media and larger public’s attention has been largely focused rather narrowly on the ‘discrimination’ aspect rather than broadening public discussion on the need for reliable and effective medical ‘treatment’.
  • Effectiveness of the proposed grievance redressal mechanism.  Many non governmental organisations working for HIV/ AIDS patients and communities 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. Mr 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 Mr Loon Gangte, regional coordinator for South Asia at the International Treatment Preparedness Coalition, an international agency that works for HIV/AIDS patients.
  • Issue of shortage of drugs. Since there is a clear need for improving drug supply through the NACO and considering the never ending bureaucratic delays in drug procurement, creating an accountability mechanism becomes crucial for success of any sustained effort.  The public funded NACO’s method of procurement and its supply chain for the drugs is  clearly a factor in the drug shortages that has kept India’s HIV control programme sub-optimal. There have been cases of stock-outs of anti-retroviral drugs in different parts of India. Earlier this year, HIV medicines for toddlers had become unavailable across India leaving parents of HIV positive children struggling to cut adult doses of HIV tablets – an unreliable and unsafe method of treatment.
  • Right to Life under Article 21. Some civil society groups in India working with HIV patients are displeased with both the government for the ‘weak’ bill and with the opposition for not resisting what they see as  dilutions enough. “The [health] minister has completely fooled the house and people,” said Mr Gangte. “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’ as required under the new bill. Receiving second-line ART treatment to all HIV/AIDS patients was subsumed under Article 21 of the Constitution – the right to life by the Supreme Court of India ruling as far back as December 2010.
  • Infrastructure shortage. The bill allege many stakeholders  fails to address improvement in medical infrastructure. Currently, there is a dearth in the number of testing facilities and centres that diagnose and treat HIV patients. It is a sad reality that  countless people from HIV/AIDS community have died due to unavailability of viral load testing. The caveat in the bill  “as far as possible” is also applicable to access of diagnostic facilities to a person looking to confirm his or her HIV status.

Bone of contention: “as far as possible” or “test and treat” all 

Since 2006, when the Bill was first drafted, India’s People Living with HIV (PLHIV) community has been demanding right to complete treatment. While the current bill protects the community from bias , the bone of contention is Section 14 (1) of the HIV/AIDS Bill, which asks State governments to provide Anti Retroviral Treatment (ART) and diagnostics services for Opportunistic Infections like tuberculosis for free, as far as possible.

According to the World Health Organization (WHO), recent studies suggest there are benefits of beginning HIV therapy early, when a person’s CD4 cell counts are higher than 350 cells per cubic millimeter.

The CD4 count is like a snapshot of how well one’s immune system is functioning. The CD4 cells (also known as CD4+ T cells) are white blood cells that fight infection. The more one has, the better. These are the cells that the HIV virus kills. As HIV infection progresses, the number of these cells declines. When the CD4 count drops below 200 due to advanced HIV disease, a person is diagnosed with AIDS. A normal range for CD4 cells is about 500-1,500. Usually, the CD4 cell count increases as the HIV virus is controlled with effective HIV treatment.

The World Health Organisation in September 2015 had recommended that patients should be given antiretroviral drugs immediately after they are diagnosed with HIV even if the persons CD4 cell count is in higher range. 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.

The Indian Health Minister Mr JP Nadda committed to implement a “test and treat” policy where all individuals who have tested positive for HIV virus would receive antiretroviral drugs. However many advocacy groups believe that it has remained a verbal commitment even after the passage of the bill. Civil society groups feel that the government has given itself an easy escape from its duty to provide free treatment to all through the clause ‘as far as possible’. Clearly there is some lack of trust, even doubt in the credibility of government’s commitment in some sections.

A step in the right direction. The urgent need for an effective legislative action to tackle the menace of HIV transmission has been strongly advocated by various stake holders. Fighting HIV/AIDS pandemic is like a marathon requiring constant long term strategies and actions. It has taken more than ten long years for the Indian Parliament to reach a consensus on the modalities of an effective legal and rights based response to HIV/AIDS pandemic. The HIV & AIDS Bill 2014 represents the Indian consensus in tacking this deadly menace. Now, through pubic body NACO’s effective and proactive implementation and through a vigilant ombudsman the HIV & AIDS Bill 2014 has the potential to go a long way in moving Indian healthcare system towards a more effective and hopefully a more humane ecosystem.

(News Desk, Uncolumn)

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