ACT UP/India Chapter started

[Guest guest]

AIDS Coalition To Unleash Power ACT UP/India

Ref. No. /Case X/DD/G.01. Date 17th Oct. 2002

Respected Sir/Madam:

Subject : Action Request for Mr. X case from your side

We are glad to inform you that ACT UP/India, chapter started on

12 October 2002. Details are attached with this letter.

We have decided to take action in the above mention case. We are

requesting you to give kind attention and let us know how your organisation

is going to support Mr. X case as he desperately needs support for

treatment, hospitalisation, rehabilitation. Waiting for your positive reply

before 26th October 2002.

Thanking You

Dhirendera

ACT UP/India

ACT UP/India, Dr. Kotnis Arogya Kendra (Gadikhana), No. 12, Shukrawar Peth,

Tel. 4486597

email : actup_india@...

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AIDS Coalition To Unleash Power

ACT UP/India

Do or Die

1986 Indian Council of Medical Research (ICMR) conducted

forceful blood collection. They detected first few HIV cases among sex

workers at Chennai. Unfortunately after sixteen years, not much could be

achieved as the National AIDS Control Programme is based on awareness &

intervention and not on care and support. ACT UP/India chapters began when

we PLWHA's experienced discrimination in medical setup, policymaking,

decision making and at employment, this is common in addition to the social

discrimination. We decieded to wakeup everybody for removing judgmental and

irresponsible attitude towards people living with HIV/AIDS (PLWHA's). We, 16

PLWHA's from different part of country got together and formed a group

called ACT UP/India (like ACT UP/New York, ACT UP/Golden Gate, ACT

UP/Paris).

ACT UP/India is a democratic, open group. We have no paid

positions and no " president " - just rotating, elected meeting facilitators,

treasurers, etc.

ACT UP/India is committed to direct action as a means of ending

the AIDS crisis. There are many activities surrounding AIDS. ACT UP/India

does not do all of them. We are not a service provider; we do not provide

medical treatment to individuals. We meet with government and health

officials to advocate for people with HIV and AIDS. We differ from typical

lobby groups by our use of direct action, which ranges from street

demostration to acts of civil disobedience. AIDS is a medical emergency, but

it is foremost a political crisis.

We are a coalition of diverse individuals united in anger and

committed to direct action to end the AIDS crisis. While the AIDS crisis is

inextricably linked to homophobia (along with other modes of oppression) and

a large number of our members come from the PLWHA's /sexual minority

communities, ACT UP/India is about fighting AIDS. Often this works in

conjunction with queer liberation, but our primary focus is the fight

against AIDS.

" Those who profess to favor freedom, yet depricate agitation, are

men [sic] who want crops without plough up the ground. They want rain

without thunder and lightening. They want the ocean without the awful roar

of its many waters. This struggle may be a moral one; or it may be a

physical one; or it may be both moral and physical; but it must be a

struggle. Power concedes nothing without a demand. It never did and it never

will. " Frederick s

" Never doubt that a small group of thoughtful, committed citizens can change

the world. Indeed, it's the only thing that ever does. " Margaret Mead, world

famous anthropologist and dyke

We PLWHA's and citizens, are involved with ACT UP/India because

of the frustration and anger with the Indian government/others who claim to

provide quality care but do not and reveal its lack of interest in improving

quality of life of PLWHA's, care and support and leadership in the AIDS

crisis.

ACT UP/India, Dr. Kotnis Arogya Kendra (Gadikhana), No. 12, Shukrawar Peth,

Tel. 4486597,

Email : actup_india@...

1st Joint Meeting of People Living With HIV/AIDS representative

from PLWHA groups, NGO's, CBO's meeting First

Date 12th October 02

Time 3.15 p.m. to 6.00 p.m.

Venue Dr. Kotnis Arogya Kendra (Gadikhana),

Shukrawar Peth, Pune

MINUTES OF THE MEETING

Meeting Facilitator

Mr. D. S. Rawat, APWHA

Meeting started at 3.15 p.m.. Mr. D. S. Rawat welcomed all PLWHA's and

thanked all the PLWHA's representatives. He also thanked the attendees for

sparing the time to attend the meeting and supporting solidarity of PLWHA's.

He mentioned that some PLWHA's representatives could not attend the meeting

for various reasons. He also spoke with many PLWHA's, individuals and head

of NGO's, CBO's and GO's. Everyone gave their consent to organise meetings

for collective responsibility. On Saturday 12th October 2002, positive

people belonging to different groups got-together for a general meeting to

fight against AIDS crisis, at the Association for People Living with

HIV/AIDS, Dr. Kotnis Arogya Kendra (Gadikhana), No. 12, Shukrawar Peth,

Pune.

Mr. Rawat gave a brief background for the need of the solidarity.

Every PLWHA's informed that in their experience HIV is still a stigmatized

illness; PLWHA's still experience stigma and discrimination. All of us

experienced that during our interaction with physicians, other health care

provider's, policymakers, decision maker's and society in general

discrimination level is very high . This was followed by three main agenda

topics, listed below:

Agenda for the PLWHA's meeting is:

1. Actions for how to develop and establish a trusting relationship

with health care providers and or a care team.

2. Action plan for improving quality of life for PLWHA's

3. Periodic group meetings, individual discussions, joint field visits

in an attempt to bring all stakeholders to common platforms for information

sharing and advocacy.

Included in the above agenda, the PLWHA's shared personal

experiences in safe and friendly environment democratically. People who had

experiences share them and introduced themselves and came-up with many

prevailing problems which includes our discussion with a theme " Wake up Now

Remove Judgmental And Irresponsible Attitude No More Suffering " . Then new

agenda was formalised.

The followings points of agenda is discussed with future plan of action.

1. Professional ethical standards, moral & emotional issues should be

implemented actively while dealing with PLWHA's.

2. Immediate action should be taken for Access to treatment.

3. Policy should be implemented for anti-discrimination

4. PLWHA's representatives should follow democratic process before

addressing PLWHA's issues.

5. Action should be taken to empower PLWHA's to improving quality of

life.

6. Involve experienced and sensitive PLWHA's in all HIV/AIDS programs.

7. Stop Funding restrictions. Funds should made available for PLWHA's

activities.

8. Action should be taken by Government against Negligence of

treatment.

9. CD4 - CD8 and viral load testing facility should be made available.

10. Stop discrimination with PLWHA's in research programs, implement

ethical standards and facility should be made available to all PLWHA's

11. Quality counseling services should be made available by professional

counselor.

12. To quality medical treatment and quality social service provision

without discrimination of any form including sexual orientation, gender,

diagnosis, economic status or race.

13. Services should be made available for laboratory investigations, CT

scan, USG, Dialysis etc.

14. Stop refusing surgery, all surgical facilities should be made available

for PLWHAs.

15. Act for quality facility and liaison between other organisation working

for PLWHA's to get more care/support services.

16. Stop discrimination such as wrapping only PWHA's dead body in plastic

bags.

Mr. X ( Name and address is not mentioned under Right to privacy an

essential component in our action plan) was present in meeting he told us:

I was so excited when I get to know that PLWHA's coming together to end AIDS

crisis. I decided to attend the meeting. I met with an accident on 29

September 2001 my left leg crushed under the light motor vehicle. After a

week, the blood report was found be HIV reactive and without my consent HIV

status was disclosed to family members. I was admitted in Govt. hospital

Initial fixing and operation was done but after I was found HIV positive my

real moral emotional and physical suffering started. Hospital discharge me

on 07 October 2001, advise was to visit Orthopedic OPD every Wednesday and

Friday. On 22nd December 2001, the attending physician said me, once your

wounds healed properly then only they will see me. I was sent back to home.

28th December 2001, one city base Sahara Aalhad care home of positive people

gave me shelter and support. One HIV positive volunteer took me to hospital

on 31st December 2001 for checkups and dressing was done. In Sahara Aalhad

care home daily dressing was done properly and my wounds healed completely.

On 07 May 2002, I was taken to OPD in Govt. Hospital with great hope to do

further surgical procedures, because wounds are completely healed.On 16th

May 2002, I was discharged after removal of the fixtures. To know medical

community judgmental attitude and irresponsible behavior I feel very sad and

depressed. The Doctor advised me after wounds heal come back for plaster. In

this eight months journey it is very difficult to share with you. 29th June

2002, I was admitted in another public hospital they demand Rs. 3000/ (US

$60), it was very difficult for me to arrange Rs.3000. In the hospital I was

praying God to help me out, some how one of our positive friend made efforts

to arrange money despite being in a very difficult situation. I was

Explained at this public hospital that if I will go for surgery I will die

sooner. Somehow they force me to get discharged from the hospital on 16th

July 2002, simply because they do not want to do surgery. They made an

excuse that I am not ready to give consent which is nether good for me nor

the doctor. My positive friend who was very sick in that time but he still

extends care me. He escorted me now he is very depressed and terminally ill

admitted in Delhi Base Michele care home now he is very much stressed and

disturbed to see treating medical community attitude towards PLWHA's how

they deal with us. Now I feel very guilty that my friend has become sick

because of dealing with doctors and people who claim they care, knowing

ground reality and fact about PLWHA's care and support services. We have

decided to start now pract ice and action. My appeals to all

national/international policy makers and representative who quality care

services for us, the way I am suffering nobody else should suffer in this

world. One year and 15 days of my life was terrible to me, without Crutches

I can not walk. I desperately need support for treatment, hospitalisation,

rehabilitation

Till today I have approached Maharastra State AIDS Control

Society (MSACS), AVERT (USAID), Dr. Padma Shetty WHO, Pune city AIDS Control

Society, Association for PLWHA, etc.

Conclusion

Sharing my real experience with all of you I believe now I am not alone and

all of you will fight for PLWHA's right. I thanks my positive friends,

Sahara Aalhad, Association for PLWHA, ACT UP/India, and all of you who

decided to take action.

We all PLWHA's agree to take action and are committed for the

cause till the crisis is over. We also agree to take action the suffering of

Mr. X who had experience through enormous psychological stress, damages,

pain, insult, harassment and loss. We have jointly decided to brings the

justice, to those who suffered. It is a real shame that medical personnel

who treated him did so badly. We agree to take action for Mr. X case in our

action plan and meeting was concluded to see on Monday 14th October 2002, to

sign for our beloved Mr. X case to show solidarity to end AIDS crisis. The

group decided to including new friends who is committed to end the AIDS

crisis and will meet on Sunday 27th October 2002, time 4 p.m. to 7 p.m. at

Dr. Kotnis Arogya kendra, for finalise next action plan.

We are setting up a new ACT UP/India chapter in India for fight to end AIDS

crisis. We all join our hands for change and remove myths about PLWHA's. ACT

UP/India (AIDS Coalition To Unless Power) is welcome committed citizens

those who is thoughtful, interested, ready to take part in moral or

physical struggle for ending AIDS crisis.

ACT UP/India demands and are committed to end the AIDS crisis.

Mr. X should get urgently

1. Treated/operated

2. Hospitalisation

3. Rehabilitation

Copy to: President of India, Prime Minister of India, Health Minister of

India, NACO, MCI, ICMR, UNAIDS, ACT UP/New York, ACT UP/Golden Gate, ACT

UP/Paris, Press, Media, WHO, UNDP, DGHS , National/International concerns

Agencies, NGO's, CBO's, etc.

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