HIV/AIDS and World AIDS Day – 2009 . A personal reflection

[Guest guest]

HIV/AIDS and World AIDS Day – 2009

Dr. Avnish Jolly

World AIDS Day – 2009 theme is 'Universal Access and Human Rights'.

It was observed around the globe to make people aware about the life-threatening

disease and to raise concern for those afflicted with it.

However, for some PLHIV (People Living with HIV) in India, it was a day that

left them jobless, because National AIDS Control Organization (NACO) decided to

end their one-year contracts as its outreach workers, five months after they

were hired.

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.

It felt 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.

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.

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.

Recently there was news that the long pending legislation on HIV/AIDS that aims

to protect the rights of people living with the disease will be tabled in

Parliament in its coming session.

The Bill was drafted in 2006 to protect the rights of people living with the

disease and to prevent and control the spread of the infection. It followed

intensive discussions with different stakeholders, including PLHIV, sex workers

and drug users, and has been pending with the government for the last three

years

Fernandes, Chairman Parliamentary Forum for HIV and AIDS advocated in

media that the consultation work on the Bill has been expedited as we want it to

be tabled in the next session of Parliament.

It is a serious matter and we want it be passed as soon as possible and the

Parliamentary Forum is holding discussions with the Ministries of Health, Law

and Social Welfare to work out the modalities for the Bill.

He also added that it is unfortunate that the bill has been delayed and we are

making all efforts to get it passed. The Bill will ensure Human Rights and

Universal Access to prevention, treatment, care and support to the HIV

affected people.

Last month, letters for termination of services were given to many PLHIV

employees of NACP-III working at its integrated counseling and testing centres.

The letters stated that Union ministry of Health and Family Welfare, GoI had

awarded a new project to a private agency which would start fresh recruitment.

These people have to deal with the mental trauma of having contacted the

life-threatening condition and the stigma that society attaches to it and we

understand having regular earnings is necessary for these PLHIV is meaningful to

live healthy life.

When even survival is difficult, having something that makes life a little

easier helps. But for many PLHIV in the country has taken away their only chance

at earning a monthly income.

Functions were held at all levels to mark World AIDS Day on 1st December, 2009

to spread awareness against the deadly disease. However, NACO, in a show of

apathy, has decided to terminate the services of its outreach workers in the

state, all of whom are HIV -positive, from November 30.

In the context of discrimination in employment on the basis of HIV status, there

have been several progressive judicial pronouncements upholding the right of

PLHIV to work.

The most notable among these is the Bombay High Court's decision that an

otherwise qualified person cannot be terminated from service unless he is

medically unfit to perform the job functions or poses a significant risk to

others at work.

Another significant judgment was that, such a person should be accommodated in

another job commensurate with his skills so long as that does not pose undue

financial or administrative hardship to the employer. However, there is no model

in India till date.

In these conditions how State can withdraw job from PLHIV. Even under NACP-III

there is mandate to involve PLHIV in the implementation of projects related with

HIV/AIDS and mainstreaming at different level.

This situation has brought out a number of legal, ethical and Human Rights

issues to the forefront as HIV/AIDS is more of a social problem rather than a

medical problem. Its Human Rights violations with PLHIVs and they have been

discriminated.

HIV/ AIDS has highlighted the inequalities, wide spread stigma, discrimination

and denial of fundamental human rights. On the other hand, it is the denial of

Human Rights that makes certain sub populations, more vulnerable to HIV than

other High Risk Groups (HRGs) i.e. Sex workers (SWs), Men having Sex with Men

(MSM) and Intravenous drug users (IVDUs).

On the other hand three main legal-ethical and Human Right issues involved in a

public health to combat HIV/AIDS, which arise in Integrated Counselling Testing

Center (ICTC) settings, are Consent, Confidentiality of HIV status and

Discrimination on the basis of HIV in health care, employment & other services..

Counselling is based on the requirement of informed and voluntary consent of the

person being tested. This policy on consent is important because we understand

that HIV is not curable and the stigma is also attached to it.

Knowledge of HIV positive status itself may lead a person to untold trauma

including suicide and revenge. So, counseling is needed which is a confidential

interaction between a client and a counselor / Health Care Provider (HCP) aimed

at enabling the client to cope with stress/ strain and make a personal decision

related to HIV/ AIDS testing as well as cope the consiquences.

The counselor should be aware of the GATHER technique, (Greet, Ask, Tell, Help,

Explain and Re-visit). Counselor should have empathy i.e. recognition and

understanding thoughts and emotions. Counseling in ICTC consists of pre test

counseling (informed and voluntary consent for testing) and post test counseling

before handing over the test result.

The counseling process includes an evaluation of a personal risk of HIV

transmission and facilitation of preventive behavior. During medical emergency

where an unconscious patient is brought to a hospital, consent may not be taken.

Here, principle of honesty permits HCP to interfere with bodily integrity of the

patient.

In others, proxy consent could be taken where client is incapacitated

(physically ill /mentally unsound /pediatric patient) and is unable to give

consent. After testing, a reactive test result is confirmed by two more tests

based on different principle/antigen.

If the test result is negative and person is practicing high risk behavior

he/she may be in the window period. He/she should be re-tested after 3 to 6

months according to National Testing Policy.

The test result is given only after post test counseling. This explains the need

for counseling and testing center where adequate voluntary testing facilities,

pre and post test counseling are available. Because of danger of vertical

transmission to infants born to HIV positive mothers, prevention of parent to

child transmission (PPTCT) centers are opened where pregnant women are counseled

and made to realize the importance of test but are not tested without informed

and voluntary consent.

So, routine offer is not routine testing. UNAIDS/WHO does not support mandatory

testing of individuals even for employment or for providing healthcare

facilities except for safety purposes(screening donors of blood, semen, organs

or tissues in order to prevent transmission of HIV to recipient of biological

products) and informed consent is also a pre requisite for conducting research .

UNAIDS issued a guidance in May 2000, the document regarding HIV preventive

vaccine research it contains 18 specific guidance points regarding the conduct

of research. Research regarding Drugs & Vaccine against HIV/AIDS involving human

rights should also address legal and ethical issues.

Highest ethical standards must be upheld when collecting behavioral or

biological data on HIV/AIDS because of the stigma and human rights issues as

study participants may experience emotional, psychological, social, physical and

economical harm.

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.

Measures intended to protect the individual also protect society. There is also

a need in society to develop a behavior change towards PLHIV and accept them

what they are rather than what they do.

In the face of AIDS this new community crisis, we should all be humble and

determined.

Confidentiality arises when there is a confidential relationship the nature of

which may be dependent on factors of trust, knowledge and skill, e.g. HCP -

patient relationship. Confidential information, i.e. information that would

otherwise not be divulged, which has the necessary quality of confidence about

it and has been imparted in circumstances imparting an obligation of confidence.

Doctrine of Privacy and Confidentiality are incorporated in Constitution of

India (Article 21) which states that confidence entrusted by a patient to a

physician and defects/dispositions in character of a patient observed during

medical attendance should never be revealed unless required by laws of the

state.

According to Goa Public Health (amendment) act 1986, Indians including

Foreigners can be forced to submit for testing for HIV at the discretion of

health officer. Once tested, Section 51 of Goa public health act and local

municipal laws provide for the notification of HIV/AIDS cases. Confidentiality

is very important in ICTC because of the stigma attached to the epidemic.

Maintaining the confidentiality of individual is crucial for protecting public

health. People, particularly those at high risk, will access these services

(including prevention, testing, care and support) only if they are sure of the

confidentiality.

It is stressed not only in medical and national ethics but has even been

recognized in common law.

Supreme Court of India has ruled on issue of the right of confidentiality of

subjects with HIV infection and the breach of confidentiality in order to

protect the health of third parties.

In the opinion of the court, the right to privacy and confidentiality is not

absolute. This right may be lawfully restricted in situations where third

parties are at risk.

Community education programs, legislation and public health policies can assist

in reducing the discrimination experienced by PLHIV. HCP may also require

education with regard to discrimination and all the health services should have

policies in place which prevent discrimination towards these patients by HCP.

Otherwise the use of ICTC services may be limited due to the fear of

discrimination which may, also, reduce the rate at which people return to

collect their results.

With respect to discrimination in Health services, Article 21 of the

Constitution of India guarantees the right to life and liberty to all persons,

including the right to health. State health care institutions are appreciative

to provide medical treatment to all persons without discrimination and abuse.

Some other areas where PLHIV face discrimination include education, insurance,

and travel.

So, there is a need to institute an antidiscrimination legislation that will

cover government, public and private settings. No statute exists which requires

the HIV testing of employees in work place or prisoners. Only, defense forces'

personnel are being routinely tested for HIV. There are no specific criminal

offences made out for transmitting HIV which need to be addressed under IPC and

CrPC.

There is also need to reform laws which marginalize women, children and eunuchs

the most vulnerable group in the HIV/AIDS pandemic. We must think of their

families, parents and friends. We should have law with effective implementation

at all levels which should end discrimination and stigma.

Dr. Avnish Jolly

e-mail: <avnishjolly@...>