Civil Society Questions Target Based Testing and Line Listing of MARPs

[Guest guest]

28th September 2010

Mr. K. Chandramouli

Secretary

and Director General,

National

AIDS Control Organisation,

6th

Floor, Chandralok Building,

36,

Janpath,

New

Delhi 110003

Dear Sir,

Re:

Concern over ‘anti-rights’ practices in interventions with most at

risk populations

We

write to you to express concern over recent practices introduced by the

National AIDS Control Organisation (NACO) on Targeted Interventions (TIs) for

most at risk populations (MARPs) namely, sex workers, men having sex with men

(MSM) and people who inject drugs that infringe individual autonomy and

confidentiality and also threaten the success of the National

AIDS Control Programme (NACP).

I. Prescription of

targets for HIV testing of MARPs enrolled in TIs

It

has come to our knowledge that NACO has begun to follow a practice of target

based HIV testing for MARPs, the achievement of which is linked to performance

evaluation and future funding of the TI. While we recognise the importance of

scaling up voluntary counselling and testing for HIV as well as the need for

sound monitoring of the programme, it is our concern that where imposed as a

target, HIV testing will take on an involuntary character, undermining

the reach and effectiveness of the TI. Target based testing of MARPs has

reportedly led to the following:

a.

Undue pressure on

organisations implementing TIs:

Organisations implementing TIs have confirmed that the inability to meet

testing targets leads to a negative evaluation by the Technical Surveillance

Unit (TSU) and/or State AIDS Control Society (SACS), triggering a series of

adverse consequences. These include downgrading of performance rating,

reduction in the size of population to be served under subsequent grants,

decline in funding and even disqualification from running TIs. This despite the

fact that the TI may be performing well on other indicators such as –

coverage through outreach, referral to STI screening and delivery of condoms or

sterile needles.

As a result, organizations operating TIs are reportedly

resorting to coercive or compulsive methods to test MARPs in order to meet the

prescribed targets. In some places, access to services provided by the TI has

been made conditional upon undergoing HIV testing. Some projects are

reportedly submitting inaccurate reports by entering one person’s

HIV test result multiple times in the data base. Still others are

reportedly organising ‘health camps’ to test persons with no

reported high risk behaviour in order to fill in numbers of people tested for

HIV. The priority of the intervention has evidently shifted from reducing HIV

risks to increasing HIV testing.

Target driven testing encourages breach of rights of

MARPs. Cuts in TI budgets for non-compliance with HIV testing targets diminish

the strength and scale of prevention services for MARPs. Incorrect reporting

and false data ultimately weakens the epidemiological vigour of the NACP.

b.

Undue pressure on peers and

outreach workers: Outreach workers and peer

educators are the backbone of TIs as they are the first, and often, the only

point of contact between MARPs and HIV related services. The burden of

fulfilling testing targets has invariably fallen on them. Fear of a cut in

salary, loss of work and a negative performance assessment has reportedly

resulted in peer staff pressurizing their contacts to get tested. Some peer

educators, for example, have reported falling at the feet of their contacts or

paying money to gain acquiescence for HIV testing. Though this may not amount

to coercion, such methods vitiate consent to testing. Further, they are likely

to create mistrust and unprofessionalism in programme delivery.

c.

Impact on MARPs: The

success of TIs lies in their ability to reach out to MARPs in a non-judgmental

and affirmative manner and instill confidence in the community. This

is done through practices that respect rights and dignity of clients at

all times. NACP-III Operational Guidelines for TIs

clearly require services to be delivered in a caring and welcoming environment.

Any compulsion to get tested can lead MARPs to lose trust

in service providers and feel alienated from services. Recently, drug users

from North-East India strongly condemned a move to have 100% testing of target

population annually, deeming it an attempt to make them “guinea

pigs”. [1]

It is well known that MARPs are least likely to access

health services if they are deemed coercive or unfriendly.[2]

The pressure to test for HIV is likely to drive MARPs away from TIs and other

critical services.

d.

Bad public health

strategy: Given the concentrated nature of the HIV

epidemic, India can ill-afford to weaken or undermine interventions for MARPs.

Further still, the testing target imposed on TIs is unlinked to treatment and

care for affected persons. It is important that we do

not begin to carry out testing for testing sake. Testing to report, for

example, that 80% of sex workers have undergone HIV screening does not in

itself serve any purpose. On the other hand, access to and use of condoms by

sex workers or MSM is a better indicator of the programme’s success.

For MARPs, the rationale for pursuing aggressive testing without assuring

access to anti-retroviral treatment is indeed questionable.

Target

driven involuntary testing is a marked departure from the rights based approach

followed under the NACP over the last two decades. It is inconsistent with

NACO’s successive policies on HIV testing including the National HIV

Testing Policy, 1995, Guidelines for Voluntary Counselling and Testing,

2004 and Operational Guidelines for Integrated Counselling and Testing Centres,

2007 – all of which require HIV testing to be conducted with

express, voluntary and informed consent of the client. These policies

incorporate legal norms on patient’s consent espoused by Courts

in India[3]

and abroad.[4]

NACO must respect law and policy standards both in letter and in

spirit.

II. Line listing

of MARPs under the TIs

Project

staff in TIs are mandated to record the name, address and

other contact information of MARPs and share this data with TSU/SACS. The

practice is ostensibly to improve follow up as well as monitoring of the

TI, at the cost of client confidentiality. Unauthorised disclosure of personal

information is illegal, unless required by law[5] or directed by

Court in larger public interest.[6]

We

would like to reiterate that respecting client

confidentiality is not only a legal requirement but also a good

public health strategy, as it improves attendance at clinics, enables

clients’ to reveal medical or related risks and facilitates correct

diagnosis and treatment. Safeguarding privacy and confidentiality assumes

greater importance for MARPs on account of the stigma and criminality

associated with sex work and drug use. Organisations have confirmed that

disclosure of personal information for line listing is causing many clients,

especially MSM to drop out of TIs. This is indeed worrisome.

III. Need for an Enabling Environment

Instead

of enforcing targets on MARPs, NACO must focus on the creating an enabling

environment for HIV prevention and control. This would include inter alia:

(a) Removing

factors that discourage testing: There are many reasons that inhibit

MARPs from seeking HIV counselling and testing. These include low self esteem,

fear of loss of support from family/peers, loss of earnings especially for

female and transgender sex workers, fear of incrimination for illicit sex/drug

use, inflexibility of ICTC timings and insensitivity of counsellors. [7]

A genuine uptake of voluntary HIV counselling and testing by MARPs is possible

only if individual and institutional barriers to testing are addressed.

( Promoting

measures that encourage testing: People seek test when the benefits of

getting tested outweigh the potential risks of undergoing testing. Maintenance

of confidentiality, protection against HIV related discrimination, ensuring

free and timely treatment, removal of punitive laws are some of the means by

which MARPs will come into the fold of HIV prevention and care. It is

imperative that NACO pursue such strategies in earnest.

We

understand that it has not been the intention of NACO to introduce mandatory

testing or breach confidentiality. Yet, target based testing and line listing

of MARPs, is inadvertently diminishing our ability to reach out and protect the

most vulnerable members of society. It is also eroding the soundness and

efficiency of our carefully designed AIDS prevention strategy. We therefore

request you to convene a meeting with civil society and community groups to

address the concerns raised.

Thanking

you,

Yours

sincerely,

Bharti

Dey

Ashok

Row Kavi

Luke

Samson

Anand

Grover

National

Network

of Sex

Workers

Integrated

Network for Sexual Minorities

Indian

Harm Reduction Network

Lawyers

Collective HIV/AIDS Unit

--

Mihir

Samson

Lawyers

Collective HIV/AIDS Unit

http://lawyerscollective.org/

[1] Move on Mandatory Testing

Questioned, Eastern Mirror, 2 June 2010, available at:

http://www.easternmirrornagaland.com/index.php?option=com_content & view=article & id=24398%3Amove-on-mandatory-hiv-testing-questioned & Itemid=82

[2] UNAIDS, A

Framework for Monitoring and Evaluating HIV Prevention Programmes for

Most-At-Risk Populations, (2008), p. 23.

[3] Samira Kohli v. Dr Prabha Manchanda (2008) 2 SCC 1.

[4] Reibl v. , [1977] 78

D.L.R 35 (Ontario High Court of Justice).

[5] Hunter v. Mann, (1974) 2 All ER 414

QBD.

[6] Mr X v. Hospital Z (2003) 1 SCC 500.

[7] Chakrapani et

al, ‘HIV Testing Barriers and Facilitators among Populations at-risk in

Chennai, India’, INP+ (2008), p 12.