My experience on Accessing AIDS Care in India

[Guest guest]

My experience on Accessing AIDS Care in India

Background:

I am the Person living with HIV past several years and searching for the quality

care with in the Govt. system and I am unable too. There are several obstacles

like, Concerns on availability of specific drugs for AIDS care, concerns on

quality of information and knowledge on treatment literacy, concerns on ART

access & existing policy or procedures and concern on People living with HIV

survival.

First of I like to say I am not a doctor and I am a PLHIV and I learned the few

of the experience from the various medical professionals, when was bedridden.

Issue:

In my several of experience I have to be thankful to NACO efforts in the recent

past, at the same time I like to address few concerns in this form on

availability of required OI drugs in the care and support centers supported by

NACO.

At present all the Care and support centers are as long as offering care

services (assuming) for PLHIV and providing primary care for PLHIV. But, the

availability of drugs were DNS, RL, Metrnidazole, Ciprofloxacin,

Ranitidine,Domperidone and few of the B 12 injections.

At the same time it will not helping PLHIV, who are on AIDS to managing their

opportunistic infection. Really in my experience I seen private practitioners

who are expert are using like Pantoprazole, Fluconazole, Azithromycin, Cefixime,

Taxim, Acyclovir etc.

It is depend on the person infection and need (here I am taking about IV/IM and

people who are suffering with multiple OIs). But those medicines are not

available in the care and support center and the person have to round across the

state and find out the HIV expert and have to spent money more than Rs. 5000/-

per day and also find out a right doctor is very difficult with in the state.

Again the diagnosis facilities were not available with the C & S system and people

have to spend their own money each and every thing.

In my understanding only people who have money can survey.

May be NACO can say we have CD4 facilities and we have a laboratories in the

Govt. hospital.

As per my experience none of the Govt. hospital will take the sample on the same

day and the result will not reached to us with in a week. We have to stand in

front of the labs at least 2 or 3 times.

One simple example I like to address on Govt. X-ray center, it is the simple

process and the matter of Rs.100/- , but I have to go for one day to X-ray

center, one day to collect report, and one day to

meet doctor.

Finally the doctor will say the film is not clear and again he/

will suggest to re-do it. Imagine from my home to hospital, how much travel cost

will be? If it the abdomen scanning there is system to get appointment and have

to be done, in the mean while person will die.

Why I am addressing this all in this form, because today I need all the above

treatment and facilities for me to survive and I do not having money to go for

private hospital and do not know where I have to go.

I cannot live and I cannot die

Secondly coming to the ART and its services, for me I began with Zidovudine+

Lamivudine+ Nevirapine and I was lost my HB in a few days and I was shifted to

Stavudine+ Lamivudine+ Nevirapine.

After few years I got pancriacities and every medical practitioner know that it

is because of Stavudine. On that movement ART

doctor recommended to the gastrologist and he charged me Rs. 15000/-.

As a part of the treatment he recommended to remove the Stavudine and suggested

to go for Tenfovir to me.

Again I came back to ART center and they do not have a Tenfovir

as a first line. Then I started to purchase from the market. In a few days my

wife got a peripheral neuropathy because of Stavudine and her HB is 9% and she

cannot go for AZT.

Again she was recommended for Tenfovir. As of now we are buying medicine from

the market. Due to continuous opportunistic infection I

lost my job and do not have an option to buy medicine for both.

Who will provide/ whether we both are have to die or NACO will kill?

Conclusion:

First of all I am not a doctor and I do not know much more about treatment, at

the same time my experience made me become a doctor.

May be my treatment literacy level will be very low, but I am sharing my

experience in this form. I do not know the recommendation, but I hope people

will share their ideas and knowledge to me for my survival.

Kumar Nagarajan

e-mail: <kumarnagarajan86@...>