Re: Rights and Responsibilities of people living with HIV

[Guest guest]

Rights and Responsibilities of people living with HIV

Re: /message/8199

Dear Forum Members,

Let me respond to this question as a person who has been in HIV/AIDS work for

the last 15 years, of which 8 years have been in the Indian Network for people

living with HIV.

By 'HIV + person' we refer to a person who is aware of his or her HIV status.

Having HIV or living with HIV is part of his or her life, but that is not all.

Being a life long condition, HIV and AIDS do bring in cause for worry and

concern about the life and future ahead.

Their behavior is dependent on who they are – basically a person living in this

society and community following the norms of it, be it regarding gender, sexual,

cultural, religious, social and such other norms.

I am sure people here in this forum can add as many dimensions to it they can

think of. But what is evident is that knowing your HIV status does not change

the personality, basic behavior, aspirations and needs of the person. Though

people living with HIV have come together as a community they are still not a

homogenous group

and their behavior is varied.

Essentially, Behavior Change Communication needs to address the concerns of and

help the person lead a positive life. A positive life here implies – attain a

better quality of life, be able to accept their HIV status, be able to take care

of their health, be able to continue to earn and support themselves and their

family, be able to prevent new infections, be proactive in seeking good health

and treatment when necessary, be able to disclose their HIV status, be able to

garner the support of the family, be able to adhere to the treatment.

Networks of people living with HIV led by Indian Network for People living with

HIV and Positive Women's Network have been champions in bringing about this

change in the lives of people living with HIV.

All their communications have attempted at giving messages on life after

infection. A range of communication, one to one, in groups, testimonials,

positive speakers, advocacy, IEC materials are all attempting to communicate

ways of attaining better quality of life.

Even coming together and meeting another person living with HIV is part of

increasing the confidence level of fellow positive people, which exhibits the

responsibility of people living with HIV.

When it is difficult to disclose one's sexual life to even people who are close

to us, many people living with HIV have taken the responsibility of coming out

in the open and sharing their life stories to change the attitude of the

community and other people living with HIV.

To motivate other people to test themselves and know their status and live a

productive and satisfying life is a very difficult change (a process like many

other behavior change communication).

Many of us know state level, district level and national level networks of

people living with HIV give voice and face to the epidemic.

Work of INP+ and PWN+ is detailed both in their website and is shared widely

with every one. They have programs, communication, researches, every thing that

is looking at addressing their needs and concerns in a responsibility framework.

To live well and support their families and prevent new infections – is one

message that is consistent here (may be it is not written down as BCC as People

living with HIV are not one of the targets of TI interventions – I personally

feel that is what is precisely being done) I think that summarizes the

responsibility focus of people living with HIV in a very right based framework.

NACO and SACS are very much part of this effort because many of the networks of

positive people are supported by the State AIDS Control Society and must

continue to do so.

Through a DFID supported project of EngenderHealth – Men As Partners in

Positive Prevention ( here word positive is used as an adjective to emphasize

that the prevention is led by people living with HIV and does not mean the rest

of the prevention work in HIV/AIDS work is negative) , EngenderHealth partnered

with Uttar Pradesh Network for People living with HIV and Gujarat State Network

for People living with HIV and were successful in addressing some of the

concerns of people living with HIV and talked extensively about their rights and

responsibilities.

The positive people from both the networks were instrumental in design of the

communication and training tool kit that aimed at bringing about a positive

behavioral change- putting positive people in charge of the prevention (

especially men living with HIV).

They were advocates for Men as Partners program – they motivated people to take

'preventing' as part of their personal responsibility –telling their spouses

about their status (that is a definite difficult change), respecting the needs

of their partner (ranges from participating care and support needs of their

spouse or partner, reducing gender based violence ), Preventing new

infections(addressing preventing HIV, participating in the PPTCT program, using

condoms) preventing illness (taking care of one's own health and actively

seeking health care services) , continuing to be part of earning and taking care

of the house hold are some of positive behaviors that were aimed at, through

the project.

I acknowledge that this was only possible because people living with HIV took

the responsibility of organizing themselves to address their concerns.

Geetha Venugopal

Program Associate

EngenderHealth Society

F6/8B Poorvi Marg

Vasant Vihar

New Delhi -110057

Ph no 011- 26147123/24/25

Fax no 011-26140861

e-mail: <geethavenugopal1@...>