Re: AIDS NGO Crisis: Please Suggest a solution

[Guest guest]

Trupti:

I am sad and disappointed after reading your e mail. Is there any way you can

refer the patients to any other organization for treatment and support? I think

you should report to higher authorities-- may be to NACO. This is a precarious

position because these patients without treatment may develop a strain of virus

which might not be be amenable to treatment by existing medications.

What the authorities are doing in your organization is deplorable -- when it

comes to dealing with PLWAs-- people should leave their own personal emotions,

egos aside and think of the people who are suffering. This would be like a

physician refusing treatment to a patient who is suffering. In such cases the

license of the physician to practice medicine should be taken away and in the

same way the authorities in your organization should be blacklisted in such a

way that they do not get any funding in the furutre to provide services to any

PLWA and your organization should be dissolved. This is downright irresponsible

behavior.

Sathi Dasgupta.

E-mail: <sathi_dasgupta@...>

[Guest guest]

It was interesting to realize that there are people like you, still

around to even give a thought on such situations.

Why, just my corporation, it is deplorable to see 15000 waiting list

at JJ hospital after the announcement of free ART treatment for HIV

patients.

It is basically the Health Ministry and Govt of India's naivety

towards the seriousness of the situation.

The GDP share for health is miniscule.

The ART in my corporation is though available in retail through

private clinicians, but i am very unsure the capabilities and their

training towards the delivery of ART therapy. I am very sure the same

for Mumbai corporation and others as the approach towards HIV immune

restoration through ART is just a formality based acceptance by our

govt and is just another of those ad-hoc initiation of health

programmes with no future thought in consideration like resistance

due to wrong delivery of medication.

A strong initiative by educated in this field should make the govt

realize the importance of education before implementation for better

results.

I don't blame my corporation for not having ART, as it COSTS, and

like many other expensive antibiotics not made available to the other

Corporation patients, even ART rests down in priority. But definitely

a personal initiative of my corporation will be welcome by all here

if a thought is given to this situation by my bosses. If i had been

in-charge, i would have seen that the treatment be made available by

taking help of NGOs, and other funding agencies, instead of waiting

for the ministry to send in the FREE prescriptions.

After all said and done, the conclusion is " Sad-But-True " .

" Akash Rajpal "

e-MAIL:<akash@...>

[Guest guest]

Dear All

This problem is not only for Trupti, it is for all of us.

In my life when I started treating HIV Patients, first lesson we learnt was

before starting ART/treatment confirm financial position of NGO/patient(if

treated in private), so that in future you do justice to your patients. In India

I have seen many Organization dealing with HIV but to just gain name & fame.

Such organizations should not be encouraged. NACO is not going to do any thing.

We must fight the situation like Trupti. May other people should come out with

strong positions in society to tackle such situation.

Dr. Rajesh M. Buddhadev MD

Surat, Gujarat

e-mail: brb@...

[Guest guest]

Dear All,

I am not directly involved with HIV-AIDS project, but similar situation prevail

in most of the projects/programs in the development sector.

Back in Kachchh just after the devastating Earthquake a surfiet amunt of

resources were pumped in with innovative projects in various development fields

(Health and Nutrition, Agriculture and Natural Resources, Economic development

etc.) but majority (if not all) the national and international NGOs vanished

within a year or so.

But when you are dealing with AIDS pataients it is totally different as they

lookup at you for their survival. I could feel the pain what Trupti is

undergoing. I admier your courage and commitment Trupti and wish you luck.

Trust your efforts (and the debate you opened) would open the eyes of all those

who feel proud by only fiddling with the Tip of the Iceberg.

Thanks and regards,

Manish Mathur

Regional Manager

Integrated Nutrition and Health Project

CARE India (Bihar)

e-MAIL: <mmathur_in@...>

[Guest guest]

Dear Trupti,

Thank you for voicing out in the open, the struggles that cut across so

many groups of people living with HIV/AIDS. It is distressing, when

political in-fighting and personal agendas takes precedence over serving

the poor and especially those who are living with HIV/AIDS. Your

client's question is a very real one and should be a wake-up call to all

of us, at all levels, as to what is the " best " way to address the

impacts of this disease especially among women and children.

I have a suggestion for you - Why don't you approach the Medical

Representatives Association in the city/town where you work and request

them to give you free samples of essential drugs which you can then use

for your clients? One NGO I know of was able to receive many such free

drugs from an MRA. These drugs can be carried by your staff to the rural

center being managed by your organization as well.

A second option would be develop linkages with other NGOs in your area

that offer care and support services for people living with HIV and

refer your clients to them. In the case of the rural center, involving

faith-based organizations would be a good option as a way to mobilize

local resources. If there is low discrimination at the community level,

then community mobilization as an option would work very well.

A third option would be liaising with the SACS where you work to

determine the type of assistance and support they could offer.

And lastly, just go out and ask organizations/people groups for help. Be

encouraged and don't let your morale dip. I know of a guy whose sole

vocation in life is to help raise food support for people living with

HIV/AIDS in the Cheetah camp slum near Deonar on the outskirts of

Mumbai. He has no office, no phones and no staff. He merely goes to

local organizations/FBOs and raises funds. He notifies the grocery shops

in Cheetah camp who distributes dry rations and food to the people he

sends.

I admire your courage and though my words are not worth two cents, I

trust and hope that there will be light at the end of the tunnel.

All the very best,

Regards,

Sokhi

e-MAIL: <ssokhi@...>

[Guest guest]

Dear Forum Members,

Motivation to continue the fight

Thank you very much for all your motivation and concerns. I would like to share

a mail with the forum personally written to me by an AIDS activist Mr. Edwin

Mapara that was very touching and made me and my team believe that there are

people on the other side of the world who shares same concerns as us and still

continue the fight inspite of all odds. I thank Ms. Akanksha Pande and Mr.

Ashwin Wasan for forwarding my message to Mr. Edwin. This gives us motivation to

continue our work. Many had suggested to start our own NGO but the questions

that come to my mind are: how? when? where? etc and I have no idea for the same.

Hope you all will continue to guide and support me.

Regards,

Trupti Desai

E-mail: <truptid_69@...>

__________________________________

Dear Colleague,

Your experiences, which are real life, are replicated across many developing

countries.

I think I can partly understand what you are going through, as I have had such

similar experiences, starting from 1985 in Zambia and then from 1990 to 2002 in

Botswana.

I was passionate and I am still passionate about helping out where I can,

working with PLWHA.

On a few occasions, I almost wanted to quit, as the policy-makers/authorities

did not seem to be bothered, as the people got infected and died in numbers. A

small voice deep down would urge me on. Twenty years later, I am happy that I

did not quit!

I believe I have made a small contribution in preventing new infections and

being part of the early team in Botswana that began to provide ART/Drugs to the

people in 2002. Today, we have close to 24,000 people on the govt programme

taking ART. It was gratifying to see patients 'recover', after so many years of

watching clients wither away and die with no hope and no medicines!

I used to ask God a lot of questions, especially after one lady confided in me.

She asked me where my God was and why He allowed her to be infected with HIV

after being a virgin for 25 years! The lady only knew one man, her husband. She

got married and four years later, she was dead! That night, I lay in my bed

asking, asking, asking and asking....!

It was not easy in the early days of HIV/AIDS as there was a lot of bureaucracy,

procrastination, in fighting and petty jealousies! People had made HIV/AIDS

programs 'personal' and did not want to let go to others.

Worse still various components/arms of the HIV/AIDS Prevention, Care and Support

programs were fighting amongst themselves, while HIV/AIDS dug deeper into the

communities. It is a battle that we shall one day overcome. If you are born a

Carer, the second option is the best, otherwise your conscious will not spare

you.

I had a small team in Livingstone Zambia that struggled with me to make a

difference. We did make a difference, despite no ART/Drugs. In Botswana as from

1990, I had another team and we struggled again to be heard. It took 10 years,

for the programme to be 'heard' and be recognised as a 'best practice'. Today

the programme is being replicated nation wide.

Because of the lack of drugs our small team worked for both prevention and care

intervention strategies. Your statements below are common for many countries;

No Funds

No salary for the staff

No medicines for the patients

No place to continue our work.

Resignation of the team members and lose of the skilled people

As a counselor and a person who is interested in serving PLWHA, what should I

do? Options for me are:

Leave the poor and sick people as they are and find a new job for me.

Continue fighting for the cause inspite of all the hurdles.

I know that I have not answered you and true, the circumstances are very

different!

All I can say, is that continue despite the hurdles. One day you shall overcome.

Our teams in Africa did, despite the delays.

One other thing, look after your health. HIV/AIDS can be stressful! Reflect on

the situation every five years! One day, when you have done your part, you can

comfortably move away with a clear conscious.

Warm regards.

Edwin