Ref. No. /Case X/DD/G.01
Date 17th Oct. 2002
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.
ACT UP/India, Dr. Kotnis Arogya Kendra (Gadikhana),
No. 12, Shukrawar Peth,
Email : firstname.lastname@example.org
AIDS Coalition To Unleash Power
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
ACT UP/India is a democratic,
open group. We have no paid
positions and no "president" - just rotating, elected meeting facilitators,
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
"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 Douglass
"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
ACT UP/India, Dr. Kotnis Arogya Kendra (Gadikhana),
No. 12, Shukrawar Peth,
Email : email@example.com
1st Joint Meeting of People Living With HIV/AIDS representative from PLWHA groups, NGO's, CBO's
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,
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
6. Involve experienced and sensitive PLWHA's in all HIV/AIDS programs.
7. Stop Funding restrictions. Funds
should made available for PLWHA's
8. Action should be taken by Government
against Negligence of
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
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
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
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,
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.
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
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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