Unresolved issues and Hard Choices. Notes from my India trip

[Guest guest]

Dear FORUM,

Hello to the list from Geoffrey who has just returned from several invites to

various states.

I am just back in Australia from a whirlwind 43 day round trip to projects in

several States in India starting in Chennai then Pune, Ahmedabad, Delhi,

Chandigarh, Delhi, Patna, Guwharti, Calcutta, and Chennai.

Part of what I do when I get home is extract relevant parts of many stored

emails that accumulate while I am travelling together with reflections on the

experiences.

I never seem to leave India in what amounts to the equivalent of 2 years

residency without being overcome by the enormity of the problem but as I scan

emails and respond to SMS messages and personal emails I realise that even the

little bit I have been able to do is having repercussions throughout the

communities of interest that I visit which now includes rural and tribal

communities as well as the very different urban Indians.

1.2 billion people over half of whom are under 30 years of age means that there

is a potential for education for prevention in sexual and reproductive health

and safety that is enormous.

I am always glad when someone responds although in my Africa experience the

responses are so often negative which is very much more depressing where so

called faith based ‘Kenyan Family Values’ contributes directly as the cause the

death of 600 young Kenyans every week..

I have now started to move about more slowly and consolidating contacts in the

various places around India.

One of the sad developments I am discovering is that low prevalence areas are

being overlooked in the initiatives being considered, in favour of the high

prevalence areas.

It shouldn't be difficult to remember that a number of low prevalence States are

now higher prevalence simply because of this short sightedness.

It seems to me that low prevalence is accidental and for it to stay that way

some intentionality needs to be employed in designed strategies almost as a

higher priority. Of course high prevalence areas need different strategies, but

to ignore low prevalence areas is very unjust, especially since to be a low

prevalence area you are not favoured for affordable distribution of medicine.

Numbers of semi literate folk in the north west States where I visited for the

first time are saying why should we be paying high prices and facing enormous

travelling expenses just because there are so few of us. It seems to me that

there should be rewards for low prevalence not penalties.

Another issue that arose was the fact that if you are blind, have hemophylia or

have thalasemia or other manifest illnesses the Indian travel concessions apply,

yet an infected AIDS patient has just as much, if not more, disability and

HIV/AIDS is not yet on the list. Part of the debate included some concerns from

infected persons that even if the concession was available they might not seek

to be so classified for the concession because of the stigma.

This can be overcome by having a list of 'manifest illness' categories for which

a concession was applicable and it would not be necessary for the actual disease

to be identifed in the concession application, just the existence of a manifest

illness would be sufficient to entitle the patient to travel concessions. This

was seen to be the next biggest issue in the North West after affordability.

The final matter that drew a lot of comments was the general lack of competency

in this area by Physicians serving the region. Advice was often conflicting and

assistance in managing toxicities was generally non existent. Therapies and

their application wasn't very well understood and patients often had to rely on

internet access or a single Doctor in a Research Hospital in the capital to get

information that was any way accurate.

Self help groups exist but ability and desire for advocacy was not well

developed. Some discussion around forming support groups where some of the

activists were interested but not necessarily infected in facilitating some

advocacy is being discussed with volunteers in the area with the language and

cultural skills.

One further issue was some local press in the Sunday paper that I read in the

hotel and I quote first the headline that read –

" Fungal Infections Can Prove Fatal For Those With HIV/AIDS. "

Then I turned to page six and read the following :-

The author was Dr Arvind A Padhye, ex chief of the fungal reference laboratory,

centre of disease control, (CDC) Atlanta USA.

He was delivering the first Thirumalachar Memorial Oration on March 13th 2004

and I quote part of the address from the newspaper :-

" Patients suffering from HIV/AIDS and leukemia have a short life which fungal

infections can shorten further. Those who have undergone renal transplant are

vulnerable too. There have been instances where patients died earlier due to

presence of fungal infection. For example, fungal infection can shorten the two

year lifespan of an AIDS patient by one year "

Now all of this was happening at a remote location in the north west at the

fifth national conference on Mycology at PGI in Chandigarh and was reported in

the local press. Efforts to engage the press to print some sort of correction

proved impossible due to the time I was there and the availability of the

medical journalist to speak to me.

Every now and again we hear about people fearing the infection and either taking

their own life such as the Jawan in the north east or the fellow who read

symptom descriptions publicly advertised on useless HIV/AIDS posters and

determined that his condition matched the symptoms so on 26th February 2004 he

killed his wife and his children and then swallowed poison to complete the

quadi.

Unfortunately for him he was saved from death only to learn that he was

uninfected and now faces murder charges.

Clearly this points the way for much more informed SACC's Committees and much

more control over what purports to be useful poster presentations in encouraging

people to test. It also indicates that journalistic scrutiny on speeches is a

must to prevent the totally scandallous quote from a Doctor who told the whole

of the State of Punjab that an AIDS patient's life expectancy is at the most 2

years and if he gets a fungal infection he or she will only live a year.

Of course that is nonsense. We know that there are people who have learned the

skills necessary to survive an infection and there are hundreds of people living

quality lives for decades and who still carry the virus.

It’s as bad as the Tamil Nadu politician at another AIDS conference saying that

she hoped that India would be AIDS free by 2010. I reminded her that what she

said was that all currently diagnosed patients were required to die before 2010

to achieve her objective, and that it was very likely that there would be

hundreds of Indians living well with the virus after 2010 in India. Of course

she said she didn't mean it to sound like that and of course she was right no

one ever means what they say when it is taken in a way that causes people to

over react. I reminded her that it was a far more effective political

grandstanding statement to say that she hoped that India did not have any more

new infections after 2010 because at least if offers a target worthy of

achievement without denigrating the lives of those already struggling to live

with the virus in India.

Kindest regards from the wandering story teller.

Geoffrey

Geoff Heaviside

Brimbank Community Initiatives Inc

A Social Justice & Welfare Service Agency

P.O. Box 606, SUNSHINE 3020 Australia

Ph: +61 3 9449 1856 - Local (03) 9449 1856

Cell +61418328278 - Local 0418 328 278

e-MAIL: <gheaviside@...>