The HIV/AIDS Bill: TOO LITTLE, TOO LATE

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TOO LITTLE, TOO LATE

The HIV/AIDS Bill that is to be tabled in Parliament soon fails to deliver on

several key counts, says Saheli Mitra

Nalini and Shuvam (names changed on request) were denied medical treatment in

government hospitals in Calcutta on the pretext that none had the facility to

accommodate HIV-positive patients.

The duo had no place to go to for redressal either as there is no law as yet to

ensure emergency medical treatment to HIV/AIDS patients.

With a population of more than 2.3 million HIV-positive people (according to

statistics provided by the National AIDS Control Organisation), India is in

urgent need of formulating a law to end discrimination against and guarantee

proper medical care to HIV-positive persons.

The HIV/AIDS Bill, which is to be tabled in the next session of Parliament, is

aimed at addressing the critical problems faced by people living with HIV and

AIDS (PLHA). However, legal experts and AIDS activists point out that the Bill

fails to deliver on several important counts.

" Thirty-nine key provisions proposed in the original draft Bill have been

dropped or changed by the Union law ministry, " reveals Raman Chawla of Lawyers

Collective, the organisation that formulated the original draft of the Bill

along with the Union health ministry.

Daisy of World Vision, a non governmental organisation (NGO) that works

closely with PLHA, points out that clauses to ensure emergency free medical

treatment to HIV/AIDS patients have been dropped in the new Bill. These clauses

were vital, she feels, given that PLHA are frequently denied treatment because

of social prejudice. There are cases where mothers are forced to deliver all by

themselves, cases where surgery is denied, or those who need dialysis are turned

down, all because they are HIV-positive.

To put an end to such medical discrimination, the original version of the draft

Bill had a provision for setting up a health ombudsman, who would ensure that

healthcare is not denied to HIV-positive people.

He was also empowered to order free medical treatment for patients within 24

hours in case of an emergency. The ombudsman could be someone from an NGO with

experience in this field and his office was to have been overseen by a senior

government official not lower than the rank of a gazetted officer.

" These provisions are needed to ensure that people like Nalini and Shubham are

not left at the mercy of unfeeling hospitals, " says city-based pathologist Dr

Papia Mazumdar.

But surprisingly, the law ministry has scrapped the provision for the `emergency

power of the ombudsman'.

The Bill has also done away with provisions for awarding penalties to health

workers who violate the ombudsman's orders. Shivaji Mitra, criminal lawyer,

Calcutta High Court, feels that such penalties are needed to make sure that

health officials give proper attention to HIV-positive people.

" Every criminal act is punishable under Indian law. Ostracising an HIV-positive

individual is also a crime and should be punished accordingly, " says Mitra.

What's more, the draft Bill does not make any effort to safeguard the property

rights of the children of those who die of AIDS. " Children of PLHA are often

denied the right to family property. Sometimes they are even denied admission to

schools. So a legal clause safeguarding their interests is absolutely

essential, " feels city-based AIDS activist Kallol Ghosh, who runs a home for

AIDS-affected children.

Ghosh also points out that foster homes and NGOs taking care of AIDS orphans are

often not given the power of a de facto guardian and hence cannot do much to

help them. " If a guardianship clause is added under the care of a third party,

then the chances of the child being deprived of his inheritance can be

minimised, " agrees Mitra.

Though activists feel that the HIV/AIDS Bill does not do enough, there are those

who say that it does have some positive features.

For instance, the Bill makes a serious effort to do away with discrimination

against AIDS victims in the workplace. " Since 90 per cent of infections that are

reported are in the most productive age group, it is important that we protect

this sizeable Indian working population from facing loss of employment and

ostracism, " says .

The Bill specifies that those with HIV/AIDS should be able to work in an

organisation as long as they are medically fit to work. It makes employers —

both in the public and private sectors — liable for any discrimination meted out

to them. Another good feature is the proposed inclusion of HIV/AIDS victims in

insurance schemes.

A key problem of the Bill, experts say, is the way it has tweaked the

confidentiality clause of the earlier drafts. Across the globe, maintaining the

confidentiality of a person's HIV status is considered to be of supreme

importance. " Leaving the option of disclosure to the patients helps to build up

confidence in the medical system and encourages people to come forward and

undergo tests, " says .

The original draft Bill had stated that no person shall be compelled to disclose

the HIV-related information of another, without the informed consent of that

person. But the new Bill says that no person shall disclose or be compelled to

disclose HIV-related information without the informed consent of the person

making such disclosure. " This makes no sense as it requires the `informed

consent' of the person making the disclosure, and not of the person the

information relates to, " says .

Another problem is the disclosure of a person's HIV status to his or her

partner. While the earlier version of the Bill did not make it mandatory, the

new Bill says healthcare providers " shall " make such disclosure to the partner.

While it can certainly be argued that the partner has every right to know, since

he or she is most at risk of infection, some activists feel that mandatory

disclosure to the partner could have disastrous consequences.

People may not come forward to test themselves as they will be afraid that the

confidentiality of the test results will not be maintained.

And the argument goes that this could drive the AIDS epidemic

underground, making it even more difficult to control.

So why has the law ministry done away with so many key clauses in the new Bill,

especially those related to ensuring free emergency medical services to AIDS

patients? One theory — and nobody wishes to be quoted on this — is that the

government is dragging its feet over this simply because free emergency medical

treatment implies a huge cost burden for it.

That may or may not be true. But the law ministry certainly needs to come up

with an HIV/AIDS Bill that effectively addresses the myriad medical and social

problems that people who live with the disease face daily.

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