PLWHA Concerns about implementation of ARV program in New Delhi

[Guest guest]

Dear FORUM,

This is my individual point if view with regards to DSACS ARV program.

Background:

The Delhi State AIDS Control Society (DSACS) with the assistance of

NACO is planning to introduce free availability of ARV drugs in the

state.

During the first phase the provision of these drugs will be made in

LNJP on 1st April 2004 for the following category of people living

with HIV/AIDS:

1. Sero positive mothers who have participated in the PPTCT program.

2. Sero positive children <15 years of age.

3. Full Blown AIDS cases who seek treatment in the govt. hospital.

According to the policy, the first phase will cover 200 PWHAs

Perspective of PWHA Community:

The community feels the needs for effective and meaningful

implementation of the GIPA through out the process.

Feel that it is important to assess the needs of PWHA who are

applying for the program.

It is important to localize the system and make familiar for all

service providers and PLWHA in-groups or individual.

It is important to know the NGOs, CBOs and government hospitals who

are designated for referring PLWHA to ARV Unit.

We are concerning about the structure laid out by the DSACS

particularly on management of adherence, and strongly feel that the

PLWHA network and groups should closely work together with the

research team set up in the ARV Unit. The main objective of this is to

exchange information, develop the structure which will finally

enhance low rate of adherence.

This is a fact, that most of the PWHA are not receiving information

about the adherence and lack of skill and capacity in management of

adherence. This is one of the most important areas to be address

prior to implementation of the policy. (See also: WHO ART Programme

Implementation Guideline: Draft 20th January 2004).

Response from PWHA Fellowship:

The fellowship has tried to develop a friendly strategy in order to

assess the current capability in terms of income and knowledge about

ARV therapy, adherence, difficulties with the procedures etc.

Based on the findings of this assessment, resources needed for

addressing the needs will be mobilized.

It is also important to encourage and help staring a self-help group

for all the beneficiaries, in order to create a platform from which

they can jointly address any issues related to the program.

In particular, it is important to identify and address those people

who were accessing the program through different VCCTC in govt.

hospitals. Because most of the VCCTC hardly referred their clients to

any services centers or support/network groups etc.

Future plan for addressing the needs of the beneficiaries:

The main and foremost focus in addressing the needs will be capacity

building and empowerment. In this regard there should be training for

ARV therapy and Adherence. Secondarily, based on the socio-economic

assessment result, a platform should be created from which advocacy

for the rights to access and benefit different existing government

schemes basically meant for people living below poverty line.

In regards to assessment about the procedures and policy introduced

by SACS, there should be a workshop or some consultation exercise

for PWHA applicants along with expertise. A Position Paper should be

developed as a result of the fellowship or exercise, and further

advocate policy change.

Please read this and send us your comment and feed bact to

dnpplus@... and rickytombing@...

Looking for your comments and feedback

thanks

Ricky Tombing

New Delhi

E-mail: <roshnitombing@...>

[Guest guest]

Dear Forum,

We in USF - CHART - India, a unit of University of South Florida India

Centre for Health HIV/AIDS Research and Training are glad to read the very

productive dialogue raised by our friends and professionals on the ART

issues.

Our centre has been fortunate to have some of the senior stalwarts in the

HIV/AIDS field since early diagnosis time and be a member of the group that

studied the HIV virus in those early years. We have been doing our bit

quietly and in a dedicated manner on the treatment and adherence issues of

ART. We have been training an army of medical and para medical professionals

in India through selective sites and impart the HIV medicine skills and

management. We have trained over 80 such manpower in three years. We partner

with over 30 centres in India.

The concerns expressed by the forum member has been constantly addressed by

us. Infact many of our trained manpower keep asking us for the second and

third level of inputs to manage the ART issues. We have measurable modules

on ART management.

While we are keen and cautious of quality in our inputs and monitoring, we

would be too happy to explore the networking of such efforts through CHART -

India partners and through our USF HQ team to provide our best support to

such issues raised by the forum. Our discussions with GoI level and in other

states are well received.

It is a joint effort. One should not expect the Govt alone to deliver the

services. There is need for support and scope for partnership as the

epidemic does not differentiate the Govt, private or NGO frontiers.

We welcome further dialogue and initiative in this through CHART- India,

Thanks

Vaidyanathan

Country Director

USF - CHART - India

E-mail: <k_vaidy@...>

[Guest guest]

Dear FORUM,

I agree with Ricky Tombing on the need for training. But I also need training

for use of ARV.

Although, I am a Homoeo Physician but I am working in a center at Lahore,

Pakistan, when ever I discussed with different Alopathic Doctors they have

deferent opinion and experiences about ARV.

So I thing you must hold a training for it with the help of Drug Manufacturing

Co.

Dr.Altaf H.Tariq

E-mail: <ahtariq@...>

[Guest guest]

Dear forum members.

Though I had highlighted some points about the proposed or already implemented?)

DSACS ARV prog in Delhi.

Its, like a dream come thrue and shows that this year is a remarkable for

thousands of poeple who are silently suffering the unwanted impact of HIV/AIDS.

We hope and wanted this initiative to be a successful prog.

But, i still have something to say about this, when i asked different NGO

working in care and support, the way they know about the program were different.

And the way we know within DNP+ and PWHA fellowship is different.

Who will be the right person to know all about this? Why thre is no uniformity

in dessiminating information.

I am really concerned about those people, who are (will be) accessing the

program directly from VCCTC. As i have said very few VCCTC have the capacity to

refer their clients care and support NGOs.

If an HIV positive person is referred to the program after or within the next

week on the basis that he needs imediate ARV threatment. That person have no

time/ less time to learned and build up his capacity about HIV/AIDS as a whole

and particularly about the importance of adherence and consequences.

It will be adeal to rech out these people at their home and empower them.

For this will the VCCTC or the ARV unit will be able to give the details of

these people, then what about the confidentiality???

I am cencerned about the transparency of the program, in our day to day life, we

often took things as granted. Like untill and unless you come to know about

the electricity you did not care about switching off the lights and fans when

you left the room.

In DOTS program also, there are some clients who take granted about the program,

because they do not know about the cost where the money comes fro, how expensive

it is etc.

By making the program more transparent to the beneficiaries and PLWHA, they will

change their attitude and will become more responsible. there will

be less incidence of wasting and negligence and this will enhance adherence.

Ricky Tombing

" DNP+ " New Delhi

E-mail: <dnpplus@...>

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