05/06/2013 06:37 pm ET Updated Jul 06, 2013

Community Leaders Central to Effective HIV Response

"So if the girl marries a boy knowing he is a man who has sex with men (MSM), and then fights and files a false case against him for dowry and extorts money, can we file a counter case?" Sita asked during a legal rights session when the resources person was explaining about human rights and Indian laws -- some of which are manipulated to use against the MSM, transgender and hijra communities.

On learning that a male police officer cannot arrest a female offender after 6 pm, again she questioned: "So I am a transgender -- male to female -- can a male police officer arrest me or will I be considered a woman?" Sita, who was an angry and agitated transgender beneficiary of a large-scale HIV prevention programme, is now a partner of the State AIDS Control Society (SACS) since being supported by India HIV/AIDS Alliance's Pehchan programme two years ago.

Not only did the SACS review her work and provide support to implement the project but they also recommended her as a leader to help with the process of forming a transgender board within the government of Delhi Social Welfare department. Sita is very pleased with such status because she can now provide services, through the Pehchan programme, which she thinks the community really needs like legal support, counselling during a family crisis as well as a host of other services. Such services not only reduce vulnerability and create an enabling environment but, thanks to the Global Fund support for the programme, the community will also accept HIV prevention services for the transgender community more easily.

Strong community leaders are key to the global HIV response and to bringing the epidemic under control, and yet international donors sometimes underestimate the importance of ownership of a program at a local level. Communities play an essential role in mobilizing people to access health systems and in providing care and support, particularly in the context of HIV. As in any structure, effective leadership is critical in such mobilization.

In India there are hundreds of thousands of community leaders in the making, many at the forefront of community-based organizations which are working at a local level to build equality across society. Nowhere is this more important than in the field of healthcare where inequality, stigma and discrimination are still daily obstacles to providing marginalized groups with the treatment, care and support to which they are entitled.

The work that the Global Fund to Fight AIDS, Tuberculosis and Malaria does to invest in a new generation of leaders is an important building block in ensuring an effective response to the epidemics. Just take the example of one transgender leader of a community-based organization in West Bengal who has struggled for more than a decade to have her views heard on HIV treatment, care and support for the transgender community. Along the way she has learned lessons about accountability and managing resources that will serve her and her organization in good stead when it comes to sustaining their work in the future. Having earned the respect of state officials, she is about to take part in an important national mapping exercise that will identify where the gaps are when it comes to HIV prevention and treatment services for the transgender community.

In India, transgender people have the highest HIV prevalence of any of the groups most at risk of the epidemic. Recent data shows that HIV prevalence among transgender people in major cities like Mumbai and Delhi has risen to nearly 25 percent. Although there is a certain level of acceptance towards sexual orientation because of the cultural context and the historic role of hijras, nonetheless a specialist understanding of the specific health needs of the transgender community has not always been evident within mainstream health services in the past. The power of a single community leader to be able to influence a nationwide process and potentially transform thousands of lives for the better is a real force for good; just imagine the collective might that could be harnessed to effect massive and lasting change if more natural leaders were to be identified and have their skills built accordingly.

Civil society, particularly those groups infected or affected by HIV, must be recognised and properly resourced as key deliverers of HIV services at community level and able to meaningfully participate in the development and implementation of government HIV-related policies and programmes. Investing in community leaders is a critical component for success.