INP+ Memorandum submitted to the President

[Guest guest]

Memorandum we submitted to President on 2nd December 2002

MEMORANDUM FOR PRESIDENT A.P.J KALAM

INDIAN NETWORK FOR PEOPLE LIVING WITH HIV/AIDS (INP+)

Your Excellency,

We, at the Indian Network for People Living with HIV/AIDS (INP+) are

extremely thankful to you for giving us time to represent some

burning issues that concern the lives of four million people living

with HIV/AIDS in India and several millions more who are vulnerable

to HIV infection. Your kind gesture reflects the importance the

Nation¡¯s highest office accords to HIV/AIDS and will go a long way

in preventing the spread of the infection as well as reducing the

impact of the epidemic on people.

Although India has the largest number of people living with HIV/AIDS

in the world after South Africa and, the epidemic is more than 16

years old, people infected and affected by HIV still live in

conditions marked by fear, discrimination, misery, deprivation,

rights violation and severe marginalisation.

One of the most persistent problems that hamper the lives of People

Living with HIV/AIDS (PLWHA) is the violation of their human rights.

PLWHA are denied medical treatment in both government and private

hospitals, access to education, marital rights, insurance, employment

and all avenues for a dignified life. Though there are several

efforts, both from the Government and non-government sectors, to

fight this, the results have been very feeble. On account of their

HIV-status, people are denied their rightful access to treatment,

thrown out of jobs, denied employment, denied family properties and

so on. Our rights are ruthlessly violated in every sphere. One of

the best ways to address this, we believe, is through legislative

processes. Strengthening the legal system and bringing out new

legislation would give PLWHA avenues for redress. There is urgent

need for the government to take steps to review, modify or introduce

laws and institutionalise legal mechanisms that can protect the

rights of PLWHA. A life without rights is like a life without air or

water. I am happy that an initiative in this direction has been taken

by Mr. Kapil Sibal, distinguished lawyer and Member of Parliament who

has set up a working group to draft a comprehensive bill on HIV/AIDS

and related issues. We humbly request you to take a personal interest

in these initiatives and give your blessings, guidance and support.

India has one of the fastest rates of new HIV infections in the

world. One of the reasons for this is the non-recognition of the

vulnerability of marginalised groups of people like Sex Workers (SW),

Men having Sex with Men (MSM) and Injecting Drug Users (IDU) and the

¡°zero tolerance¡± shown by Government agencies like police towards

them. For various reasons, marginalised groups are more vulnerable to

HIV infection. Research studies clearly show that lack of tolerance

and repressive action against them deprive them of options that can

reduce their vulnerability to HIV. For instance, as studies

illustrate, crackdown on MSM, SW and IDU, force risk-taking behaviour

underground, increase the chances of their exploitation and block

preventive measures from reaching them. We therefore request your

intervention for putting in place a sensitive, harm minimisation

policy.

Care and treatment are of utmost significance since there is no cure

for AIDS at present. Therefore, treatment for the relief of

opportunistic infections such as TB, fungal infections, pneumonia etc

and their symptoms can extend and improve the lives of people living

with HIV/AIDS. We request you Rashtrapatiji to play a leadership role

to ensure proper care and support programmes so that the epidemic can

be dealt with greater efficacy.

An issue of extreme urgency and paramount importance before us is

access to treatment. The availability of Antiretroviral (ARV)

treatment has made a dramatic difference to the lives of HIV positive

people all over the world. Wherever it is available, ARV has made HIV

almost like a chronic illness such as diabetes. But in India, despite

the availability of cheap generic versions of ARV drugs, it is beyond

the reach of all of us. We are repeatedly told that it is expensive

and is not possible in our public health system. However, we would

like to bring to your kind notice, your excellency, that several

countries ¨C ranging from Brazil to Haiti ¨C have demonstrated that

it is possible even in resource poor settings. The World Health

Organisation, in its document released at the 14th International AIDS

Conference, has clearly delineated how it is possible in resource-

poor countries. This possibility can alter the lives of millions of

people ¨C both infected and those who are vulnerable.

The country will benefit from ARV, both in terms of economic gains by

cutting down on morbidity, increasing productivity and reducing the

cost for caring for the ill and by preventing the spread of the

infection. Access to treatment, as studies in several parts of the

world have shown, also improves prevention efforts. Availability of

treatment will encourage voluntary testing and thereby bring out the

actual picture of the epidemic. Knowledge of one¡¯s HIV status

provides for better preventive efforts. Examples from several

countries show that prevention can be effectively linked with care

for optimum results. We therefore request you to use your good

office, to influence the National AIDS Policy to expeditiously

include access to ARV as a priority area. To make ARV affordable, the

steps that would be needed would be including ARV drugs in the

essential drugs list of the country¡¯s public health system, reducing

the price of ARV, negotiating with trade regimes for compulsory

licensing for the entire range of ARVs including new generation drugs

and improving the public health infrastructure for administering ARV.

In view of the repeated denial of treatment at hospitals, both

private and public, it may be legally ensured that all hospitals have

treatment-preparedness for HIV. We lose people every day because

hospitals either deny treatment or show inadequacy of preparedness.

The prospect of the availability of a preventive vaccine also raises

hopes for reducing the spread of the infection. Vaccine efforts are

happening in India also. However, the legal framework for the use of

vaccines is not yet clear. We therefore request you to give your

support for steps to legalise the development and trial of anti-HIV

vaccines in India. Ultimately, like in the case of many difficult

viral illnesses of the past, a good vaccine will be a large-scale

solution for HIV infection.

HIV/AIDS is doubly cruel on women. Women face more blame, stigma and

discrimination on account of HIV infection. For biological and socio-

economic reasons, women are more vulnerable to HIV and once they are

infected, they are at enhanced risk of rights-violation. The key to

address their basic vulnerability is to address the huge gender

biases that exist in our region. Lack of empowerment, economic

independence and access to information and services put women at

extreme risk. We therefore request you to look at the gender

dimensions of the epidemic and advocate steps that would reduce the

special vulnerability of women to HIV.

Your excellency, global experience in fighting the epidemic has

demonstrated clearly that Greater Involvement of People Living with

HIV/AIDS, signed by a large number of countries at Paris AIDS Summit

in 1994, is very effective in improving the efficacy of the campaign

against the HIV/AIDS epidemic. Greater Involvement of People living

with HIV/AIDS in decision making (GIPA) resulted mainly from the

recognition of the role of PLWHA in containing the epidemic owing to

their rich experience of living with HIV and handling first hand all

the issues concerned. Though India is also a signatory to the Paris

declaration, the implementation of GIPA has not crossed the stage of

tokenism. For genuine implementation of GIPA, more concrete steps

would be needed. We therefore request, your Excellency, to use your

good office for implementing GIPA principles, as the Government of

India committed at Paris. We would also like to draw your attention

on the need for setting up a Technical Resource Group (TRG) on GIPA

under the National AIDS Control Organisation (NACO).

Your Excellency, the key to the fight against HIV epidemic is

political commitment at the highest level. Some countries, such as

Uganda and Thailand, which were hit badly by HIV/AIDS, could bring

the epidemic under control because of the early political commitment

shown by the Governments and also the political system. In a

democracy, there is no better weapon to fight HIV than political

commitment. There have been assurances and examples of political

commitment in our country. However, in view of the urgency of the

situation, we would need fast-track changes to reinforce it. We

therefore request you to take a direct leadership for mobilising

political support for our cause. Your lending a helping hand and a

voice to our cause, we believe will have instant impact on the

quality of the lives of not just us, the infected and the affected,

but also those millions who are vulnerable to HIV.

We would like to thank you once again for allowing us audience and

giving us an opportunity for representing these pressing issues. On

behalf of all the people living with HIV/AIDS in the country, we

request you to kindly take all possible steps to reduce our suffering

and to protect future generations.

Yours sincerely

K. K. Abraham

Indian Network for People Living with HIV/AIDS (INP+)

Chennai, India

E-mail: " inpplus "

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