Re: Death or Second Line: (When are we going to denounce AIDS denialism in India?)

[Guest guest]

Dear FORUM,

Re: /message/7882

There are millions of dollars in Global Fund money available for 2nd line in

India, and UNITAID has offered free 2nd line for all who need it for two years.

This particular person who made this posting has survived, but many don't, and

are dying anonymously without the ability to articulate their situation.

How can you have 90,000 people on first line and not have anything assigned for

2nd line?

The reality of the necessities of PLWA are completely obliterated by the NACO

" idealogy " promoted by a leader who has devoted much of her efforts to creating

the myth that India cannot afford 2nd line, or does not have infrastructure,

etc, when anyone who has closely studied the situation knows that the money is

there.

How can you not have the infrastructure when you have these same people

receiving first line in dozens of clinics across India?

These people who need 2nd line treatment are being annihilated? When is the

international activist community going to take up this cause?

Stern

e-mail: <rastern@...>

[Guest guest]

Dear FORUM,

Re: /message/7902

Thanks to Loon for hisreply and his kind words.

I think the point I was trying to make is complex one. My main point was that

Indian activists could, at least in theory, ask for the involvement of the

" international community of activists " in creating even more pressure on NACO to

act on the issue of 2nd line treatment.

We have many examples world wide where pressure brought by the international

community has impacted on National governments. In South Africa, for example,

there have been numerous times in the past few years when international protests

have directly affected the numerous ARV roll-out issues. In India, without a

doubt international pressure has contributed to positive outcomes in relation to

the new patent law.

Actions on an international level or regional level have been important in some

Latin American countries, in Thailand, with regard to Intravenous Drug Users,

and also with respect to the situation recently faced by Act-Up Paris, and

repression or arrest of Chinese activists, among many other cases in which the

international community of activists have been involved.

But how do we decide when the international community should become involved in

a national issue?

1) Should it be when local known activists ask for outside help?

2) Should it be when there are at least " x " number of PLWA, known or

unknown, who ask for outside help?

3) Should it occur when the international community knows of life

threatening abuses, even if nobody inside the county is asking for help?

4) Should we recognize that empowered activists may or not always

recognize and/or prioritize the needs of the most marginalized PLWA,

impoverished people often living in rural areas who are not part of the

NGO/activist communities, but whose (unnecessary) deaths are certainly as real

as the deaths of anyone else?

5) Should it be determined by time factors, for example when you refer

to the fact that it has now been a year since the pressure began for NACO to

provide 2nd line ARV's, but this is still not occurring?

6) Do activists from the outside who become familiar with a situation

in a given country have a " legitimate right " to ask for international

support, even if they are not from a particular country, but have become aware

of the abuses that are occurring?

7) In the case of India, how well does the " laid back community of

Indian activists " that you refer to represent the " wishes " of those PLWA who are

not part of the activist community and perhaps have no access either to NGO's or

to internet etc, but are still dying? How do we know what they want. Are we

morally justified in making the inference that they want to survive, and in

acting on their behalf, even when we don't even know them?

8)How is it possible to get so much support for the Novartis case,

among other similar cases, but to have to struggle to get support for other

issues? Obviously Novartis has world wide implications, but aren't we, as an

activist community, equally concerned about the fate of several thousand Indian

PLWA who now need 2nd line medications and don't have them? I don't know.

You finish your letter with the statement

" we want our rights to life. Period. " But does that imply that you would

welcome effective and well thought intervention on the part of the international

community to put more pressure on NACO?

You also mention that " our pace is slow and frustrating and very

embarrassing " but I really that any Indian PLWA should feel embarrassed,

(although I would want to be sensitive that to the fact that you and others

every right to feel embarrassed if that is how you feel) because of the slow

place when there is such a un-balance of power in India, and so many obstacles

that Indian PLWA have to deal with such as but hardly limited to:

1) An unusual degree of stigma and discrimination in the Indian

culture toward PLWA, where complete exclusion and violence can still occur to

those who are known to be HIV positive.

2) The fact that the caste system is alive and well, even if it is

out-lawed. Lower caste people are relegated to slums and still limited in so

many ways, which is only worsened if they have HIV.

3) The highly unequal distribution of wealth in India.

4) The fact that discussion around sexuality is still highly taboo in

India, and the culture is highly punitive and judgmental toward any woman who is

perceived as violating extremely strict culture norms. Also even men who are

perceived as " rebellious " toward cultural norms, whether they are gays, sex

workers, aids, etc.

I remember last year when Eugene Schiff and I visited a slum area in

Northern Delhi with a bi-lingual guide. There was no electricity indoor

plumbing, etc. in this slum area which house over a thousand people. Fuel for

cooking came from cow dung. There was only one water faucet and we saw women

lined up at the faucets with naked children to get water. There were certain

places near the shacks where we could not walk, because there was human

excrement as this was the " public bathroom "

The conditions were the worst I have ever seen in my life and in all my travels.

This was occurring only a few kilometers away from luxurious condominiums, and

expensive shopping malls.

A group of Hindi speaking people from the slum surrounded us and were

obviously curious about who we were and why we were there. Eugene wanted our

guide to ask the people if they had access to condoms.

But the guide said that this would be " dangerous " and the group (which was

mostly men) could become angry with us, because that question implies themes

related to sexuality that are taboo, perhaps even more so in the poorest

communities.

It was then when I truly began to understand the effect of " culture " on the

epidemic in India.

5) Finally, the overall dominance and hegemony of NACO, the National

AIDS Commission which seems to hold all the cards and to try to control the

NGO's and any other decision makers. NACO is extremely hierarchical.

When we met with the Director of NACO in November, 2006, among many other

reasons she gave for not providing 2nd line medications was the fact that

physicians were not trained to administer them, ---yet just the previous day we

had spoken in one public hospital with two physicians who seemed to be extremely

well informed about Medications such as Tenofovir, and Kaletra, and described

how their patients were dying because of lack of access to these drugs. And

this is now nearly a year ago and the situation has not changed

These are but a few of the incredibly overwhelming obstacles faced by Indian

activists, and there seems, from my point of view, to be no reason to be

embarrassed about the slow pace of things when these kinds of horrible

imbalances in power exist everywhere in Indian society.

So I respect your feelings and your use of the word embarrassed, but I hope that

these feelings would not affect your willingness to approach the

internationalcommunity.

So I am back to my original question, which is how to determine whether or not

the international community would be " justified " in carrying out strategic

actions, directed at obtain 2nd line medications in the public sector,

collaborating with anyone in India who wished to collaborate. But I am also,

therefore, back to the list of questions that I posed above.

Again Loon, thanks for your kind words about our work, but you and others like

you are the people who inspire me, believe me.

Sincerely,

e-mail: <rastern@...>