The Manipur experince of free of Free ARV program

[Guest guest]

The limitations of being " free " ('From NEIHRN desk)

R.K Raju and Chitra Ahanthem

The Free Anti-Retroviral Treatment Programme through which ARV drugs would be

given free of cost to HIV/AIDS patients, has been launched in Manipur on April

5, as part of the initiative taken up by National AIDS Control Organization

(NACO) in six Indian States with high prevalence of HIV/AIDS including Nagaland

in the North Eastern Region.

In Manipur, the programme is being implemented through the Regional Institute of

Medical Sciences (RIMS) Hospital with a target provision range of giving free

treatment to 300 PLHA. But many have reservations about the program given the

fact that it was announced without consultations with any NGOs who have been

facilitating ARV treatment.

The exclusion of the medical personnel's who render HIV/AIDS related services in

Jawahar Lal Nehru Hospital (JN Hospital)has certainly raised a few eyebrows in

the NGO fraternity, more so as JN Hospital has more to offer in terms of

HIV/AIDS related treatment services though RIMS has more infrastructural

strength (CD4 count machine), thereby raising questions over whether RIMS has

the capacity to cater ART to the 300 PLHA.

The main issues coming out of the implementation of the program is that those

involved are yet to lay down a standard protocol for treatment or even the

criteria of the program beneficiaries based on the guidelines of NACO. The

prescribed NACO guidelines are at best, a loose framework and many are of the

opinion that due planning prior to the advent of the program would have helped

matters.

It may also be noted that though NACO guidelines include free ARVs for children

below the age of 15 years, the present ARV drugs consignment do not seem to

include treatment regimens for children. There is no mention of covering issues

of PLHA with viral hepatitis in regard to their appropriate regimen and its

treatment under the program despite IDUs making up a majority of the HIV/AIDS

population in the state.

There is a general feeling that IDUs will be more likely to be sidelined from

the program as majority of IDUs are infected with Hepatitis C.

It may be noted that GIPA Alliance comprising of five NGOs and 28 self help

groups but more significantly, a representation of those infected or affected

by/with HIV/AIDS had called a consultative meeting on 24 January, 2004 which was

attended by medical practitioners from both JN Hospital and RIMS, various NGO

field workers, Health Department Officials and representatives from the

Manipur State AIDS Control Society, including the Project Director.

This meeting had debated and argued over the modalities of the program, the

criteria for service beneficiaries etc. with a strong voice calling for

consultation with people affected by HIV/AIDS and physicians with relevant

experience. And given that the present ARV program has gone on without

consulting any other agency/representative group, there are serious doubts over

its transparency.

Despite the much hyped Manipur State AIDS Policy as the " only State policy " ,

mention may be made that in the neighbouring state of Nagaland, due

consultations are on with the Health Department, the State AIDS Control Society

and various NGOs working in the field before the launch of the program, which is

slated for 16 April 2004.

___________

Cross posted from NEIHRNers neihrners@...

NEIHRNers Update, April 12, 2004

[Guest guest]

Dear FORUM:

There is no surer formula for failure in a place like Manipur than where a

SACS can't ensure that all service providers and affected and infected

communities are included in the consultation and roll-out of a program as

important as this one.

Clearly more evidence of one-up-man-ship and parochial interests are being

shown to exist.

NACO can't handle a process as localised and complex as this but if the SACS

doesn't then it will not be able to ensure effective treatment outcomes

across the range of infected patients.

Dispensary services are only a small part of the process. Adherence,

toxicities, dual infections, inadequate understanding of the complexities of

toxicities and plain old sanitation, nutrition and effective treatment of

opportunistic infections to say nothing about behaviour change strategies

should be indicating that there should be a role for every active community

group or NGO willing to be involved. Why is this not obvious to Manipur

SACS?

For two years I have been reading about a them and us mentality in this

State and all the while the problems get worse.

Someone should take the initiative and ensure that all interested parties be

given a briefing and a voice so that this time, with new money from the

Elton Foundation, we actually get some accountability back to the

affected and infected communities, and from that, develop some strategies

that might achieve better outcomes.

There should be no prizes for point scoring in Manipur or for that matter

Nagaland either.

Geoffrey

E-mail:<gheaviside@...>

[Guest guest]

Dear Friends,

I don't think what is happening is Manippur is an isolated experience.Last 20

years we ignored treatment issues.When external agencies started pushing for

ART we started going behind it without doing much home work.Now we want to make

it universally available by training doctors for a week or two and those who are

in the field and providing treatment all these years are being ignored.

Interestingly it is argued that presence of HIV specialists will only add to

the stigma. But Unfortunately the fact is that HIV medicine is becoming more and

more complicated day by day and it need to be considered as aspecialty . It

seems that any community program implemented should recognise the existence and

experiences of experts in the field.

If we don't recognise dedicated and interested workers practicing ethical and

proper ART with out any support from either government or any other agencies all

these years,and the we are going to entrust the whole program with a beurocracy

it is very likely that the program may not be success ful

Ajith

E-mail: trc_ajisudha@...

[Guest guest]

Dear FORUM:

I am hearing people's frustration and I think it is right that people get

concerned about roll out issues.

What needs to be remembered though is that there are already many doctors

working in centres of excellence in a variety of places in India.

I know because I located them when we were stopped from bringing indians

needing medicine to Australia for drug access.

These are very competent physicians. Desperate patients with money have also

found these centres of excellence, so much so that the case loads are far

too high for excellence in patient care but the treatment knowledge is

already there.

Of course I haven't found all the centres of excellence but they should be

able to be located quite easily.

The problem with central government in India is that it has got to be seen

to be in charge and become the initiator of projects once money is being

rolled out. Far too much money has been spent in india on 'infrastructure'

and 'service providers' already. It is now long overdue for some benefits to

attach to the lives of infected Indians. The present planning strategy is

such that it is like the process is officially just about to begin and that

they are faced with the prospect of setting up the services and then working

out how to organise and run them.

The AIDS bureaucrats are positioning themselves for postings and positions

so that career prospects are also secure and there is a proposal to crash

course physicians to dispense medicine.

For an effective and efficient roll out of services the existing centres of

excellence should be contracted immediately and the experienced doctors who

work there be engaged to monitor the progress and implementation.

I am having in mind several places and persons - If the government wants an

opinion they know who to ask. If a high ranking public servant finds him or

herself afflicted with the disease they will also know where to go to get

confidential treatment. These centres need to be identified and formerly

recognised. Patients are already comfortable using them. Reduced costs of

medicine will enable more effective testing to be done to make sure the

drugs are working. Patient intake forms are already drafted. Allied health

professionals are already competent to enrol patients. The wheel does not

need to be re-invented.

In Bangalore there is a number of centres that have been providing care

including medicine, just use them and don't start a new one.

In Maharashtra there are many centres of excellence and I am reminded about

the number of people who line up at the Ruby Hall Hospital and Dr Sanjay

Pujari's private clinic. Make it easy and use them.

MNP+ in Maharashtra are also supplying medicine to PLWA's. Help them to roll

out more effective services. YRG centre in Chennai is also extensively

involved in delivering clinical services and they have wonderful ancilliary

equipment for people whose problems might be exacerbated by opportunistic

infections. Use them and make it easy for them to enrol more people whose

capacity to pay is limited.

Dr Chinkolal from Action India in Delhi is a highly competent HIV Physician

with an already extensive case load. Make it easier for him to extend his

competencies. All of these centres of excellence could become places where

interested physicians could also go to upgrade their competencies.

In some of the low prevalence areas like the Punjab there are also Medical

Research centres where treatment is provided and medical competencies exist.

Make it easier for the patients attending those centres by authorising the

prescribing locally at affordable prices.

This notation is not meant to be exhaustive. There will be many centres

already treating hundreds of people. It is therefore a joke to be pretending

that because of an election it is impossible to get budgets passed to

establish parallel clinical trial centres.

In Calcutta there is also an established HIV treatment centre. Access to

medicine is haphazard. Fix it so they don't have to worry about the medicine

and the clinical services are already there.

If the government was really serious about implementing a program that would

slow and eventually stop this epidemic it can readily instruct the SACS in

every State to identify appropriate services and if they had trouble knowing

where to start then they could call a meeting of the infected and affected

communities in their State and the NGO's that have been working to try to

keep people alive and seamless strategies using exisiting services can be

upgraded without reinventing a protocol.

India should know that if it wasn't for the existence of all these centres

of excellence the epidemic would be much worse than it is. The Indian

Network for Positive People based in Chennai has information that could

streamline the roll-out and validate the people who are meant to be getting

the treatment to prevent unauthorised people accessing the medicine.

Dr Radium Battacharia from Gujarat heading up another effective network has

her finger on the pulse of the effective care treatment and support programs

already operating in Ahmedabad and other places.

Let us not do any more wondering as to how we will roll out treatment.

Empower existing services and then become inventive at strategies to help

people adhere to the medicine. Having it is one thing. Adherence is another

specialist service in the team approach to effective outcomes. Followed by a

whole host of specialist experts in the field of natural medicine and

nutrition who can be engaged to facilitate strategies for managing

toxicities when people become long term users.

The best outcome from this approach is that we will eventually discover

everyone who is infected because they will be encouraged to seek treatment

to normalise their lives. From that we can ensure the infections are not

being passed on through behaviour change strategies (yes there is sex after

HIV but you better learn about how to do it safely and effectively)

With a concurrent sexual health and safety education program in our schools

we should be able to stop new infections or minimise the number of them in

the next sexually active generation.

Central Government then needs to upgrade the performance of the 9000 odd

private blood banks to ensure that the product that they offer patients is

totally safe. It is not my view that this is so even now in 2004 and if you

want to know why I formed this view, seek an audience with the Hemophylia

society of India and let them tell you how many of their patients have dual

infection of hemophylia and HIV because they trusted blood product in their

treatment for hemophylia.

This is my contribution to an effective roll out of treatment initiatives

that has the best chance of being effective.

Debate and additonal comment on centres of excellence is welcome I'm sure.

Geoff Heaviside

E-mail: <gheaviside@...>

[Guest guest]

Dear Moderator,

I hope the prayer of the PLHAs on ARV who sold out every valuable things they

have to continue the ARV won't be excluded from the so call 3 by 5 initiative.

Manipur would be very happy if we in coporate the rganisations/Network/Alliance

who already has been involved before the we dream of 3 by 5 to the future course

of action.

Thanking you

Best regards,

L.Birendrajit Singh

General Secretary

Social Awareness Service Organisation(SASO)

Manipur.

E-mail:<lbirendrajit@...>

[Guest guest]

Dear forum,

I have been following the Manipur experience. What I could found out is that

there are some people in Delhi who want things done on their way, whether it is

right or wrong.

The Project Director of the SACS of NE can't even tell the truth because they

think that it will bounce back to their Chair. The Addl.Director NACO is happy

to frame the criteria verbally (inclussion or exclusion) for the people who will

be on ARV.

Here are some of my observations:

1) We are happy to hear that ARV comes freely for PLHAs,but why the gold rush

without having an almirah to store the medicines.

2) Should not be an election gimmick!!

3) Who are the people responsible for the initiative?

There are lots and of things which need to be clear for better understanding or

better services.

Thanking you

Sincerely,

Kh.Manihar

E-mail:<khomanihar@...>