Some suggestions and a little history of AIDS response

[Guest guest]

Dear Forum,

Since 1981, when NY Times reported the first cases of AIDS in USA, then called

GRID, and the silence by the Reagan/Bush administration in power in the USA, it

was the patients, who took it upon themselves to form groups like the Gay Men's

Health Crisis (GMHC) in NYC, and others in the west coast, to save their own

lives.

They fought the pharmaceutical companies for production of drugs, cheaper

prices, and by the mid-eighties had two representatives in each pharmaceutical

company, to monitor correct procedures in drug development, and quick approval

of drugs by the FDA (Food and Drug Administration). ACT-UP, an organization

formed by Larry Kramer, used

civil disobedience to protest high drug prices.

They took it upon themselves to close down the bath houses, had teach-ins as to

the cause of the spread of AIDS, suggested use of condoms, and controlled the

spread, without much government help, till Clinton came to the scene in 1992,

and first used the words AIDS in speeches and really meant it. The first few

years of battle of AIDS patients is well documented in the book, ‘And The Band

Played On’.

Just a reminder though, that these were powerful, white, gay men.

It was due to these men, that in spite of being an epidemic, confidentiality was

kept paramount, though it is not true when someone contracts a STD like Syphilis

or Gonorrhoea, which is immediately reported to the health department.

I will refrain from commenting on the efficacy of such a law, which was done to

keep from discrimination at work.

I got a second lease on life, of course with my parents’, sisters’,

friends' and relatives' endearing care and help, but also because of the quick

marketing of ART or HAART drugs in 1995, which were rushed through FDA approval,

because of the activists.

I should probably mention here that when I was really sick, my dissertation

advisor Dr Pruzek, we were colleagues then, invited my parents and me to

a wonderful bar-be-que at his house.

I was tested in 1992 (was diagnosed with CD4<200), I became involved

with people of Asian descent with HIV/AIDS, through APICHA in NYC,

founded by an American lady of Japanese descent, and API Wellness in San

Francisco.

While working with the South Asian group in USA, I had to constantly remind the

well-meaning members of the group, that having a computer

network would be useless (other than for students), since the most

susceptible of Asians, the single men, or married men, without their

families, living in USA, were taxi drivers, unskilled or semi-skilled

labourers, who would never possess or use a computer. They would be

better served by having posters in grocery stores where they shop, and probably

on the South Asian TV networks, which they watch.

The reason I give this brief history, is that in India, we have a

different scenario:

1) AIDS has first affected more women, who are generally, economically, more

disadvantaged than men.

2) It is affecting children. The testing of paediatric use of AIDS drugs is

still in its infancy even in the USA. Perhaps, we in India could start ethically

sound trials on children, and move research ahead. Vertical transmission has

been virtually eliminated by use of a single drug, nevirapine, cheaper than AZT,

though its ‘single’ drug use on pregnant seropositive women can make that woman,

resistant to that class of drugs, viz. NNRTIs, later.

3) We have produced AIDS drugs cheaply, and are supplying them to

African countries. In a recent documentary on AIDS in Kenya, all the

shots, which panned on drugs, were made by CIPLA.

4) We are generally (except for the small, yet growing middle class)

bound by a slightly different code of ‘sexual morality’ than the west. Our

sodomy laws were instituted by the British, and left in place, after they left.

Having NACO and UNAIDS, and all the other private donors like Elton

Foundation, Bill and Melinda Gates Foundation, would be to naught, if we cannot

get the PLHAs to be active participants in ALL forums or conferences. To just

shake hands with them in hospital beds is not enough.

As our so-called ‘illiterate’ electorate has shown time and again, that they are

not mere thumbprints on ballots, so will the PLHAs show, that when their life is

at stake, they have plenty of input, and should be included in any discussion.

Please involve them, or at least let them be an audience, so they can protest

when things go wrong with those who formulate policies.

I know that under the second Bush’s policies, abstinence gets primary

focus, and funding depends on it. However, we have always produced cheap

condoms. As a matter of fact most condoms sold in the USA, are produced in

India.

Lastly, adherence to ART drug regimens is vital, regarding the time it is taken,

and not missing a single dose, since the virus conveniently mutates and becomes

drug resistant if such strict adherence fails. This should be the primary focus

for PLHAs who get ART, and those who administer them. There was a program

started by CDC called Prevention for/by Positives. Empower those PLHAs taking

ART drugs, to reduce the burden on social workers, who are probably responsible

for making sure patients adhere to their regimens. These PLHAs may also choose

to help disseminate information on how AIDS spreads.

Perhaps the gravity of the AIDS pandemic would be made clearer if

someone simplifies the terms and pictorially depicted the various

classes of drugs, viz. Nucleoside Reverse Transcriptase Inhibitors

(NRTs), Non-Nucleoside Reverse Transcriptor Inhibitors (NNRTIs),

Protease Inhibitors (PIs) and Fusion Inhibitor , and how they inhibit

t-cell destruction and show them on TV ads.

This will enlighten the people that it is a disease like any other, and also

emphasize the various ways to keep the virus from attacking T-cells in our body,

and how difficult a task it is. It will also tell people why we need multiple

drugs to keep someone well, and how wily this virus is.

Use the PLHAs (who are willing, or in shadows) to showcase what would

happen if the general public does not change sexual habits. They will be a

powerful force, instead of just stating it as a fact. They each will have a

story to tell and give a face or shadow to this terrible epidemic.

This could also generate income for the PLHAs. They will leave a better imprint

than Buladi on Kolkata TV, on the audience.

A warning: Do not use ONLY healthy looking men or women to advertise about

HIV/AIDS, as they do for AIDS drugs in the USA. It definitely sends a wrong

message that it is OK to get AIDS and live with it.

Wishing for utopia,

Priyadarshi Datta

E-mail: <thurpu@...>