Re: Comments Invited on GIPA Policy and DIC Guidelines

[Guest guest]

Dear all,

Re: /message/11361

It seems, url provided at the earlier mail did not work. The following is the

correct url to the Draft GIPA policy for comments.

Please do provide the feedback on this draft GIPA policy as this policy

document has been in the making for months now. And, there have been so many

rounds of consultations and feedback at various levels since the last 3 years.

Its high time now that India do have a National GIPA Policy in place to benefit

every PLHIV. Thanks Shantamay Chatterjee for providing the correct url

http://nacoonline.org/upload/Mainstreaming/Draft%20GIPA%20Policy_for%20Comments.\

pdf

Editor

AIDS INDIA

/

[Guest guest]

[Editors note: We expect Mr. Mayank Agarwal, NACOJD (IEC) to take note of this

situation]

Dear AIDS INDIA FORUM members

Re: /message/11361

We cannot view and see to GIPA POLICY and DIC Guidelines,at the NACO web page.

When i clicked attached link web address for NACO GIPA Policy- the link is not

accessable. And a message " Incorrect link The link you gave does not work,

either because the page it points to has been deleted or moved. If you clicked

on a link, please inform the site’s webmaster that the link is faulty " appear on

the screen.

NACO may kindly send us a copy of the GIPA policy document or correct their

web link before the dead line for comments on GIPA Policy.

This is a serous matter for the community members

Ms.Pooja Thakur

President

Chandigarh Network of Positive People (CNP+)

Regional Coordinator INP+

C/O - Drop In Center - Int. Hotel, Sector 15A,

Madhya Marg, Chandigarh 160 015.

Tel.: +91-172-2784042,4664261

Cell: +91-9316177261

cnppls@...

[Guest guest]

Dear Forum,

Greetings from JKNP+........

Re: /message/11361

First of all I would like to salute and give a standing ovation to all those who

sacrificed their lives struggling for the rights of  PLHIVs and with their

efforts although late, NACO has drafted GIPA Policy and invited the feedbacks

from the stakeholders.

I had given very patient and deep insight to the document and came to this

understanding that the policy covers almost all the aspects of the PLHIVs and

for the same I would appreciate their sincere efforts to put the feelings and

thoughts of a PLHIV onto the paper.

I would only like to highlight the ground fact that GIPA Policy requires the

seriousness, dedication and sincere efforts of all those in NACO, SACS, or in

whatever platform so that the real benefit of the policy shall be passed on to

the PLHIVs otherwise it is again a very futile exercise.

Specifically I would like to highlight on the selection criteris point wherein

it has been written that " PLHIV networks can recommend a candidate for the

post " ; here I would say that it should made mandatory that PLHIVs consent and

approval must be taken in appointing the GIPA coordinator and anyone recommended

by them henjoys the confidence of the community and can do better and justify

the role of the GIPA in passing on the welfgare schemes to the community and

highlighting their plight at relevant platforms.

Secondly I want to brought everyones attention to this that the Guiding

Principles of NACO as mentioned in NACP where it is written in bold letters as:

1. The voice of the PLHIV is heard.

2. PLHIV access their rights to necessary service, care and support.

3. The interests of PLHIVs are represented.

My point is if these guiding principles are being followed in letter and spirit

by all those sitting in the NACO and SACS, many of the problems being facede by

the PLHIVs shall be mitigated.

With this I will conclude my opinions, hoping that this draft policy should not

only be draft but made into the final policy document taking into considerations

the suggestions, aspirations, requests of all the stakeholders & should be

implemented soon, which will help in a long way in mitigating the stigma,

discrimaination and a feeling of acceptance.

Regards

Amit Sharma

President

Jammu Kashmir Newtwork of People Living with HIV/AIDS

441, lakkar Mandi, Old Janipur, Jammu

09205011372, 09205043186

e-mail: <jknpplus@...>

[Guest guest]

Dear Forum,

Re: /message/11371

The draft Policy paper about meaning full involvement seems the " old wine in a

new bottle " i.e. the " Tokenestic Approach " again.

Such as if we think of the top most decision making body i.e. technical advisory

group, only Two people living with HIV are there from INP+ and PWN+ in a body of

15 to 20 persons in total.

The voices of PLWH could be unheard as usual by a large group of professionals.

Again, INP+ or PWN+ can't be considered as the representatives of total no of

14,10,192 Citizens living with HIV in India, according to the information got

from NACO under RTI.(as on 02/03/2010) as this Two so called " National Networks "

don't have the reach to all of the PLWH in India.

There must be a space for equal participation of PLWH in " Technical advisory

Group " by including the capable Indian Citizens living with HIV as individuals

as there are a huge no of capable PLWH left these networks for there or don't

like these Networks for the dictatorship or permanent ownership by the name of

" Society Registration Act " .

It has become a permanent process to enjoy the cream layer of any project for

the community being " board Members " of Networks registered under " Society

Registration Act " .

Although, any society/network registered under " Society Registration Act " , no

" Governing Body/Board member " can earn single rupee as salary/honorarium etc.,

which is completely illegal for anybody. So, this " Iillegal trend " must be

stopped.

To break the ongoing trend of " Proprietorship in existing PLWH Networks " there

must be mandatory rule not to allow PLWH to be in any " Government Body/Network

Governing Body " more than " Two Times " to give an opportunity to " New Comers "

keeping in mind that still today, hundreds of " New HIV Detection " coming out

every month throughout India.

In case of participation from any U.N. Organisation, " UN Plus Members " are

welcome and for any other International donors any professional HIV Positive

representative are also welcome in " Technical advisory Group " .

Still now, GIPA Principle is known to a very little part of the Indian citizens

living with HIV, even to a lot of professionals working in the field of

HIV/AIDS . So, it is the high time to adopt some programme to " Promote GIPA

Principle " to cover this part.

To step up the posts of " GIPA Coordinators " upto District and Block level to

reach the grass root stakeholder of the programme.

To set up some mechanism to make any " PLWH Network " accountable and transparent

of the to the whole community mainly about " Financial Implication " to stop the

practice of " forfeiting money for self interest " by the name of " Financial

Utilisation Certificate " , which I have seen myself and can prove case to case

about the " Global Fund Money " specially in the state of Madhya Pradesh " as well

as a few NGOs.

There must be some " Watch Dog " mechanism through Grass root Stake holder's

Monitoring and Feedback Review " .

Now, about the monitoring " Quality treatment delivery system " by the primary

stakeholder in ART and Non-ART centers. For example apart from the answer from

NACO under RTI( " Does all NACO ART Centers ensuring Audiovisual Privacy

throughout India? Ans:* " All efforts are made to ensure Audio visual privacy

during counseling at all ART Center within the constraints of availability of

space in the hospital where ART Center is functioning " ), recent past I have

experienced about " Follow up Counseling " at STM, Kolkata on 16/04/10 for the 2nd

line ART client, i.e. just measuring the body weight and counting of pills for

mandatory official documentation for adherence.

Although I have very deep faith on Clinical Treatment part there.

There must be a review process through " Client's Feedback " to ensure " Client's

Satisfaction " and " Ethical Obligations " of service providers.

There must be some mechanism to ensure sustainable " Livelihood Support " for

every PLWH including " Monitoring and Support " system.

There must be some " Advocacy Mechanism " for the immediate ratification " HIV/AIDS

Bill 2006 " which is still pending, may be at any stage!

Finally, to ensure to conduct all periodical meeting on time and dissemination

of public information about minutes of every periodic meeting to make NACO

complete " Accountable and Transparent " to Indian Citizens.

As we have heard about the " National AIDS Committee " chaired by our Hon'ble

Prime Minister, but nobody knows about the meetings and decisions there,

probably the same " complete committee " never meet in last two years.

Thanking you,

In solidarity,

Snehansu Bhaduri, Kolkata

Snehansu.bhaduri@...

9874693613(Mob)

C.C. to

1.Shri Fernandes, President

Shri Navneet S. Tewatia, FPA Coordinator

Mobile : (+919910040116)

Convener, Forum of Parliamentarians on HIV/AIDS(FPA)

#35-37, North Avenue

New Delhi 110 001

E-mail ID : tewatian@...

2.Mr. Mayank Agarwal, JD (IEC) and

Mr. Shantamay Chatterjee, Sector Specialist,

Mainstreaming Cell, NACO,

9th Floor, Chandralok Building, 36 Janpath, New Delhi-110001.

[Guest guest]

NACOs guiding principle should include most at risk communities!

Re: Re: /message/11371

Good to see NACO's initiative in implementing GIPA.

There are very critical issues that SIAAP feels need to be flagged about the

GIPA guiding principles;

• The policy acknowledges " affected communities " but does not include them in

the implementation level.

• PLHIV focus is definitely important to provide care and support services and

to ensure their rights but at the same NACO cannot ignore the fact that

" Prevention " programmes need to be scaled up for the most at risk communities

who are the Men having Sex with Men, IDUs, Female Sex Workers

- Number of HIV infections was 2.5 times higher than the increase in the number

of people on antiretroviral drugs in 2007 (2008 report on Global AIDS epidemic)

- It is estimated that 50 million women in Asia are at risk of acquiring HIV

from their partners who are most at risk communities. (UNAIDS 2008 report on

transmission in intimate partner relationships in Asia)

- There is evidence of risk among key population. It is clear that programmes

to prevent new infections among these key populations must constitute an

important part of national responses. ( 2009 UNAIDS/ AIDS epidemic update)

The above facts underpin the reasons why GIPA implementation should include

communities at risk.

• While PLHIV's experiences can be drawn to design programmes it is also

important to include most at risk communities to design programmes and policies

for them which can be based on felt need.

SIAAP would like to invite discussions on this.

Lavanya Keshavraj

Advocacy Officer

South India AIDS Action Programme

e-mail: <vanza20@...>

[Guest guest]

Dear All,

Re: http://health. groups.. com/group/ / message/11371

It is extremely important to ensure the effectiveness of " the voice " in getting

translated into GIPA through concrete interventions and directed action for

inclusive development.

Perception and attitude towards a particular community are the major

determinants of the seriousness and sensitivity accorded to the views and needs

of the community.

Some organizations  still consider PLHIV as mere " patients " ('under' the care

and support component of the NACP) and do not even realize their potential as

proactive faclitators of the GIPA in practice.

People use the pretext of the GIPA coordinator/PLHIV personnel being 

contractual staff of the organization, in going to the extent of denying

'permission' for participation in important deliberations/activities , to

faciltate and strengthen the ongoing activities for the cardinal principles of

GIPA,mainstreaming,gender equity and what have you.

Efforts must be made at all levels to faciltate the desired change in the

attitude.Our country has enough collective expertise and experience to ensure

that GIPA becomes a reality beyond its extant existence as a mere principle.

Action will follow 'the thought' based on a clear/shared vision.

The guidelines developed after several consultations faciltated by myriad

stakeholders at different levels capture and detail the appropriate activites

and modalities for the same

The need of the hour is to work on the same and faciltate others to ensure the

objectives of GIPA through concerted action.

Best wishes,

Dr.Rajesh Gopal.

e-mail: <dr_rajeshg@...>

[Guest guest]

Dear Forum Members and persons concerned,

Re: /message/11371

Warm wishes from CNP+.

 

This mail is in concern  with the feedback on GIPA Policy Guidelines For HIV

Programmes.

I have gone through the draft guidelines of GIPA. I appreciate the initiatives

which has been taken by NACO to introduce GIPA after a long global advocacy.

As far as my understanding on this issue, I am of the view that role of GIPA can

not be possible in real practice until and unless PLHIVs are not involved in

real sense like that of implementing officials at NACO/SACS level. Following are

my suggestions which can be taken before framing the final GIPA policy

guidelines:-

 

1. a person must be a member of the network

2. a person must be nominated by State Level Network.

3. inclusion of Union Territory too as that of all the States.

4. qualification must not be a criteria, experience with PLHIVs must be given

weightage. H/She should be able to read, write and communicate effectively with

PLHIVs and network/liase with various stakeholders.

5. GIPA Co-ordinator post must be coined as Deputy Director GIPA as that of

existing DD TI, DD IEC, DD ICTC etc.

All key responsibilties/duties, renumeration must be equivalent with Deputy

Directors SACS. Keeping such equility in designation will definitely enhance the

capacity of the post and will boost the appointed PLHIV.

6. DIC shall be given equivalent recognition, infrastructural, human resource

and financial support as that of CCC.

 

With regards,

Ms.Pooja Thakur

President ,Chandigarh Network of Positive People (CNP+)

Board Member, INP+

Regional Coordinator INP+

C/O - Drop In Center - Int. Hotel, Sector 15A,

Madhya Marg, Chandigarh 160 015.

Tel.: +91-172-2784042,4664261

Cell: +91-9316177261

cnppls@...

[Guest guest]

Dear Associates,

Re: /message/11371

Often I feel as if someone was pricking me when I find PLHIV feels death is the

only solution.

We believe that State has an obligation to ensure that essential care and

support must available to PLHIV.

This exercise is only a lip-service after 24 years (since 1986) we are not able

to serve in our countary.

If we still do not able to serve tham then very soon you will find system

failure in the services provided by NACO under NACP.

I find total failure by the State to fulfill this obligation violates the

Right to Health and Life. As a result, most of State organs in India simply do

not know how to take care of the Rights of PLHIV.

Many PLHIVs in India unnecessarily experience excruciating pain, because of

restrictive drug regulations, lack of planning and poorly integrated care result

in needless suffering for patients because they cannot get respectable

livelihood inexpensive and effective medications.

I focus specifically on the availability of treatment of patients and

support provided by the State.

I further submit that the State's failure to ensure that treatment may violate

the prohibition against torture and cruel, inhuman and degrading treatment

because of the widespread nature and

severity of the suffering it causes.

We know many of the PLHIVs are illitrate and the system for grievance redressal

means nothing to them. Their prime concern is access to care, treatment and

services. Policy statements mean nothing for them.

Kindly start action because service is utmost important  rather advocacy of

emphasises on the process of inclusion for the foundation for policy

development.

 

Both the ICMR and Central drug standard organization have established guidelines

for biomedical and clinical research in India. Much

of the legal and ethical debate around HIV infection zeroes on the conflict

between society's right to protect itself against the spread of disease and the

rights of infected people to confidentiality and civil liberty. We are still not

able to implement it at all.

PLHAs invlovement in clinical trial is still an area of concern. What do the

NACO-GIPA policy say about it? Because, many PLHIVs are enrolling as

volunteers without understanding it and middle men are earning out of it. What

is our National Policy on it?

The following are some of the issues need to be addressed in the propoposed GIPA

policy frame work.

1) Involvement in clinical trials

US HIV vaccine trial calls for more volunteers 

http://news.bbc.co.uk/2/hi/health/8636429.stm

BBC, Thursday, 22 April 2010 03:21 UK

 Scientists and doctors in the US are calling for

volunteers to  participate in a trial of a new vaccine aimed at HIV. More than

one million people in the US alone live with the virus, and for every two people

who receive combination drugs therapy, another seven are diagnosed.

2) Ensuring Audio-Visual privacy at care and treatment settings

Kindly read the articals on AIDS India -

NACO can't ensure Audio-Visual privacy! Reply from

NACO under RTI

http://health. /group/ / message/11313

 

3) HIV/AIDS and World AIDS Day “ 2009 . A personal

reflection

/message/11007

4) Ensuring adequate funding for care, treatment and services

The following recent articals are reflecting status of

access to HIV services in the countary:

 

Cutting AIDS funds risks " death sentence "

http://uk.reuters.com/article/idUKTRE63P0ZM20100426

5) The special needs of Children and their involvement in GIPA

India: The orphans of HIV

http://www.globalpost.com/dispatch/india/100408/india-AIDS-orphans-HIV?page=0,0

6) Lack a comprehenive policy and legal frame work

Parl panel for rehabilitation policy for AIDS patients

PTI , The Hindu, New Delhi, May 2, 2010 

http://beta.thehindu.com/news/national/article419676.ece?homepage=true

7) Addressing Stigma and Discrimination:

GIPA and racism is an other issue which we must handle  collectively

Kenya Gipa Report Card - 2009

http://www.gnpplus.net/images/stories/gipa_report_card_kenya.pdf

SANO AIDS So

http://www.sanaso.org.zw/Guidelines%20for%20Reducing%20Stigma%20 & %20Descriminati\

on.htm

8) ADVOCACY OUTLINE

Evidence based advocacy—promoting informed and inclusive public debate for

social change

http://www.globalaidsalliance.org/page/-/CEPA%20PDFs/ADVOCACY_OUTLINE_FINAL.pdf

9) Need for a Research agenda

With out a research roadmap, GIPA policy may not be able to sustain. The GIPA

issues of PLHAIV from ethinic minorites needs particuler attention.

In his work, Alan Li strives to improve mental health, prevention and support

services for members of ethno-racial communities infected and affected by HIV.

His research focuses on issues facing ethno-racial communities, particularly

issues related to men who have sex with men (MSM), immigrant and refugee

communities, and the greater involvement of people with AIDS (GIPA).

http://www.ohtn.on.ca/Pages/Funding/Recipient-Profiles-Alan-Li.aspx

Thye Proposed policy framework provides great Hopes for the sustainable change,

but need much more deeper understanding on PLHA issues.

Best Wishes,

Avnish

e-ail: <avnishjolly@...>