Universal Access for WHOM!

[Guest guest]

UNIVERSAL ACCESS FOR WHOM!

My recent encounter in claiming my RIGHT….

My injecting behavior led to HIV and HCV infection. I was advised to

get on ARV before the government rolled out its ARV response and so I have

bought my ARV till date.

I paid for it, sometimes my company did. Presently, I do part time work in

Guwahati and am based in Manipur.

Been sick for some time. I need endoscopy twice a year to manage

esophageal varices. My ARV regime is VIRADAY (Tenofovir +

Emitricitabine+ Efavirenz). When I started I used AZT and DDI in 1997 when my

CD4 was 231units. Later in 2001 Lamivudine was added.

My present CD4 count is 173 units and Viral Load is <50 copies

(undetectable).

My Hepatitis C was treated with peg interferon + ribavirin in

2006.This led to changes in my ARV treatment and I was put on VIRADAY.

Hep C did not leave me and my present viral load is around 45 lacs.

Since, I am based in Manipur, and my treatment is expensive, I applied for ART

through Jawaharlal Nehru Hospital, Imphal. Dr Priyo Kumar of JN Hospital,

Manipur moved the papers rapidly and transferred medicine procurement to ART

centre at Regional Institute of Medical Science (RIMS) (alternative first line

and second line can only be given from RIMS).

RIMS is authorized by NACO to lead the State AIDS Clinical

Expert panel (SACEP), a forum set up by NACO, for first line

alternative or second line ARV. The registration of ART was done at

JNH on 7th August 2010 (reg no 3506) and the subsequent referral was

done to RIMS.

The SACEP is meant to meet regularly and they couldn't tell me date

for next SACEP meeting. Meanwhile I met with Dr Kula, NODAL OFFICER

ART of RIMS for availing ARV (Tenofovir+ Lamivudine+ Efavirenz) asking him to

be considerate and speed up the process.

He just brushed aside my plea. Rules are more important than people’s lives.

Universal access is just on paper. I finally managed to meet SACEP on 9 Nov

2010. All SACEP members were there except Dr Priyo Kumar of JNH.

They went through my medical papers and verified their queries.

They explained that the NACO eligibility criteria “should be on ART for last 2

years from Govt ART centre” or consideration in case of widow and certified

individuals below poverty line (BPL). Finally, they agreed to give medicine on

the production of government ‘ration card’ or BPL certificate.

I couldn’t trace my ration card so I went to DC office to get another ration

card. I was told to apply to DC Imphal west with our land patta (Xerox) with an

affidavit.

Meanwhile the Supreme Court ruling came out in “Times of India” stating that

both first line and second line ARV should be given for those who need it

irrespective of earlier enrollment in the ART roll out programme or not.

It clearly stated that those who were taking ARV from other

sources could join and apply first line or second line ARV. Here is

the link

http://timesofindia.indiatimes.com/india/All-HIV-patients-to-get-second-line-tre\

atment-free/articleshow/6915022.cms

Again I went to ART centre, RIMS to get ARV but couldn’t meet the

doctor. I left the electronic copy of news item on “Times of India” to be sent

out to all SACEP doctors for their information.

Now I am told that the RIMS doctors in the SACEP are waiting for NACO

Delhi’s signal to allow access to ARV in spite of the recent Supreme

Court’s ruling. Who cares for the Supreme Court, the babu’s rule.

I believe that systems are made to benefit people. The systems here

are made to harass people.

And what is more important, the system or people?

And these doctors are fine to let people die as long as their paperwork is

complete. So much for their Hippocrates oath.

This system is not helping people in accessing ART. I can understand

the logic for having guidelines/rules.

But it should have the space/ flexibility for cases that do not always fit the

mould. There should be a built in flexibility so that service to the people come

first up at all times.

I also realized that the SACEP meeting (date and time) is held at the whims of

SACEP members. Whenever they are free. The patients’ wait.

The day I faced SACEP they started the meeting one-hour late. I waited and

waited.

Co-incidentally today is World AIDS Day. The theme for today is “

Universal Access and Human Rights” I am raising my hand to ask what

“universal access” means to the authorities in Delhi and Manipur, to

the people who manage health including HIV.

Am I understanding ‘Universal Access’ wrongly?

I am one among millions of people who are being deprived and imagine

the magnitude of the problem facing by this community in different

fronts.

With God grace, I am able to pull along all this while

affording my own cost until I come to this juncture, where I find

mysef stranded and confused regarding my claim for an access which I

believe that I am entitled for.

It is a sorry situation for I am but, one incident. How many people are being

driven to death in such circumstances?

May God forgive the babus, politicians and doctors when they present their case

before the Almighty.

H Umesh Sharma

e-mail: <husharma@...>