One Bill, many rights, some concerns

Knapps

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06, Nov 2016

India’s Cabinet had approved the HIV and AIDS (Prevention and Control) Bill, 2014 with amendments in early October 2016. The bill, drafted to safeguard the rights of people living with and affected by HIV, seeks to control HIV spread and addresses HIV-related discrimination through legal accountability. Knappily analyses this ‘rights based’ bill that has taken 14 years to be framed, and highlights the scope for further improvement.

What does the amendment to the HIV Bill do?

People with HIV/AIDS not only have to physically suffer from the debilitating disease, they also have to bear the cost of its expensive treatment and oftentimes face social ridicule and boycott. After a long wait and sustained campaign by activists, Indian government has taken robust steps to safeguard the rights of people living with HIV/AIDS.

In the first week of October, the Union Cabinet approved amendments to the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014, that could go some way (but not the entire distance) in preventing discrimination of people living with HIV/AIDS.

It has many enabling features.

  • Prohibition of discrimination: Prevention Denial, termination, discontinuation or unfair treatment with regard to employment, education, healthcare, residing or renting property, standing for public or private office and provision of insurance are forbidden under the amended bill.
  • Legal mechanism: The bill seeks to bring in legal accountability and provides for the setting up of a formal mechanism to probe complaints against those who discriminate against people with HIV/AIDS. A person found guilty of discrimination could be jailed for up to two years. The bill also frees people with HIV/AIDS from mandatory medical tests as a pre-requisite for jobs and education.
  • Informed consent: Information regarding one’s HIV/AIDS status cannot be disclosed unless the individual gives her informed consent for such a disclosure or the court orders such information to be revealed.
  • Welfare orientation: The bill says that the Union and state governments shall take measures to provide anti-retroviral therapy (ART) and infection management for those with HIV or AIDS. Every person in the care and custody of the state shall have right to HIV prevention, testing, treatment and counselling services.
  • Guardianship: In matters related to admission to educational establishments, operating bank accounts, managing property, care and treatment, amongst others, guardianship rights have been reworked to bring into the fold older siblings above the age of 12 (and up to 18) – allowing them guardianship over younger family members living with HIV if they are competent.

Why was the bill needed?

The numbers speak for themselves. India has the third-highest number of people living with HIV in the world with 2.1 million Indians accounting for about 4 out of 10 people infected with the deadly virus in the Asia—Pacific region, according to the United Nations. The adult prevalence is in the range of 0.3%, of which around 40% are women. Four high-prevalence states of Andhra Pradesh, Maharashtra, Karnataka and Tamil Nadu account for about 55% of the total cases in the country. The prevalence of HIV has been decreasing over the past decade (it was 0.41% in 2002).

Most HIV affected people in India face discrimination. There is as of now no legal remedy available to them to claim treatment or contest harassment. It was high time India moved decisively to provide relief to the patients.

  • The Bill seeks to give a legislative framework to existing norms of non-discrimination against people living with HIV/AIDS — most crucially, making it a legally punishable offence to deny such a person health insurance on the ground of the infection that causes lowering of immunity. The Bill incorporates feedback from stakeholders, and also recommendations of the Parliamentary Standing Committee on Health and Family Welfare to which it was referred after being introduced in Rajya Sabha in February 2014.
  • What was until now achieved through executive orders will, once Parliament passes the Bill, be laid down as the law of the land. After the Standing Committee submitted its report, a Group of Ministers headed by Finance Minister Arun Jaitley finalised the draft that was sent to the Cabinet.
  • Apart from insurance, the protection from discrimination mandated in the Bill will enable an HIV affected person to live a dignified life. The provisions extend to the fields of employment, healthcare services, educational services, public facilities, property rights, holding public office etc. It also recognises the right of a person living with HIV/AIDS to keep his/her health status confidential. Institutions are obliged to keep all such information confidential and reveal them only with the informed consent of the PLHIV (person living with HIV).

When did the Bill drafting process begin?

This making of this bill has taken a long time (and the process is not over yet). The process started in 2002, when the need for a law was recognised by civil society members, PLHIVs, and the government. An advisory working group (AWG) under the chairmanship of the National AIDS Control Organisation (NACO) agreed upon the process for drafting such a law with approval from the Ministry of Health and Family Welfare.

  • Between 2003 and 2004, the Lawyers Collective held 15 regional consultations in various cities across India with stakeholders to discuss the provisions of such a law to protect the rights to HIV prevention and care for vulnerable communities as well as PLHIVs. These consultations were supplemented by additional meetings with civil society organisations and state governments right through the process of developing the draft. The HIV/AIDS Bill was submitted to the National AIDS Control Organisation (NACO) in August 2006.

The tabling of the HIV/AIDS Bill in the Rajya Sabha (where it is residing now) is in itself a landmark event on at least two counts.

  • It is the first ever explicitly rights-based legal endorsement in the context of a specific health condition that has heightened the vulnerabilities of already marginalised and often criminalised populations.
  • It is the first time a law has been attempted to be crafted from the ground upwards as a response to real time issues for people whose voices are rarely given a hearing.

Where is the room for improvement?

While this bill is a big stride forward in the war against the HIV/AIDS epidemic, there are still longer strides to be made.

There are certain concerns being raise by the Civil Society.

  • The biggest concern comes from four words. The addition of the words “as far as possible” in the section dealing with the government’s obligation to provide free, uninterrupted ART gives the state leeway to abandon its responsibility to continuously providing life-saving medicines that patients cannot afford to miss even for a single day. When it comes to law, wording is everything. The text of the bill must be amended further to make it mandatory for the government to extend free treatment to all patients.
  • Another major concern is the exclusion of the most at risk population, such as female sex workers and drug users who might use contaminated needles, from the definition of protected people in the bill.
  • As per the bill, ART will be available to only those who are below the CD4 500 count. It neglects all those infected patients who are above CD4 500. There is no provision for even children who do not fall under CD-4 criterion.

HIV, CD4 and AIDS

A CD4 count is a lab test that measures the number of CD4 T lymphocytes (CD4 cells) in blood. In people with HIV, it is the most important laboratory indicator of how well their immune system is working and the strongest predictor of HIV progression.

  • CD4 cells (often called T-cells) are a type of white blood cells that play a major role in protecting our body from infection. They send signals to activate our body’s immune response when they detect “intruders,” like viruses or bacteria.
  • Once a person is infected with HIV, the virus begins to attack and destroy the CD4 cells of the person’s immune system. HIV uses the machinery of the CD4 cells to multiply (make copies of itself) and spread throughout the body. This process is called the HIV life cycle.
  • The CD4 count of an uninfected person ranges from 500 cells/mm3 to 1,600 cells/mm3. A very low CD4 count (less than 200 cells/mm3) is one of the ways to determine whether a person living with HIV has progressed to stage 3 infection (AIDS).
  • ART involves taking a combination of HIV medicines (called an HIV regimen) every day. It prevents HIV from multiplying and destroying the infection-fighting CD4 cells.ART can’t cure HIV, but it can help live a longer, healthier life and reduce the risk of HIV transmission.

Who is leading the way in low cost medication for AIDS?

Over 80 per cent of the drugs used globally to combat the deadly AIDS are supplied by Indian pharmaceutical firms, and these low-cost generic medicines have helped scale up access to HIV treatment across developing countries.

  • Addressing the high-level General Assembly meeting on HIV/AIDS, Minister for Health and Family Welfare J P Nadda said that India had faced the "spectre of disastrous consequences" on account of AIDS epidemic 15 years back but was able to manage the challenge effectively.

The UN General Assembly adopted a new political declaration that emphasised on the critical importance of affordable medicines to combat the scourge of HIV/AIDS.

  • The Minister also underlined that the international community cannot afford a rebound of the AIDS epidemic and that developed countries should do more and enhance their commitments to fight the worldwide scourge.

Last October, the African heads of state urged India’s Prime Minister to resist growing pressure from the United States government and Western drug multinationals on India to stop exporting cheap generics to Africa.

  • The US pharma lobby wants India to limit the production of affordable generics to only what is required for Indian consumers under its “compulsory licensing scheme” and not produce drugs for third country patients.
  • India’s existing policy has caused the price of HIV drugs to fall 99% – from $10,000 per person per year in 2000 to $100 per year today.

India’s long battle with the Big Pharma

India’s longstanding battle with Big Pharma over generic drugs dates from the 1970s, when it began only recognising patents for drug-making processes, rather than products. This allowed local companies to ‘reverse engineer’ expensive medications using different processes, and then offer drugs cheaply.

  • In 2005, India became party to the WTO TRIPS (Trade-Related Aspects of Intellectual Property Rights) agreement, which requires members to respect patent rights issued in other members’ markets. India negotiated the ‘compulsory licence’, allowing local companies to produce generic copies of foreign drugs for domestic use if there is a major public health need. These drugs can also be sold to foreign buyers.
  • Under the Doha Declaration on the TRIPS Agreement on Public Health, each member has the right to grant compulsory licenses and the freedom to determine the grounds upon which such licenses are granted.
  • In the 1990s, India’s Cipla Pharmaceuticals began offering HIV/AIDS anti-retrovirals in Africa at less than US$1 a day — far less than Pfizer’s US$33 a day. Médecins Sans Frontières estimates that nearly 80 per cent of anti-retrovirals in Africa today come from India.
  • Today, India is under pressure from the United States to introduce ‘data exclusivity’, which grants IP protection to the data produced while developing a drug, as well as the drug itself.In practice, this would mean banning compulsory licensing, and might even restrict generic versions of off-patent drugs.

Note: Big Pharma refers to all the big pharmaceutical companies of the world, though most of them are American firms. The Big Pharma conspiracy theory holds that pharmaceutical companies operate for sinister purposes and against the public good. In HIV/AIDS treatment, it is frequently alleged that the Big Pharma is responsible for the spread of the disease so that they could make money selling medicines to treat it!

How should the Bill be further revised?

It must also be noted that the HIV patients without ART treatment are more likely to spread the virus than those who are being treated. So, if the government is serious about controlling the scourge of AIDS, it must remove the CD4 rule.
  • Employing the ART regime at a higher CD4 count means starting therapy earlier. Recent evidence suggests that earlier ART also reduces mortality (deaths) and morbidity (disease), and the incidence of opportunistic infections like tuberculosis.
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    Tags | antidiscriminatory approach HIV HIV Bill HIV/AIDS bill rights based bill