Shalom Delhi has been caring for people with HIV/AIDS since the year 2001 and since the year 2009 we’ve had a special programme that reaches out to transgenders with HIV. There’s a significant number of transgenders in Delhi, about 100,000 and approximately 20-40% of them have HIV so HIV is a big need among them.
As we’ve been working with transgenders all these years some of the issues that we’ve seen – they are very socially excluded. Many of them have been rejected by family, they’re rejected by society, they just don’t go to public spaces. There’s a high sense of stigma, both external and internal stigma, and because of that stigma there’s high rates of depression, there is substance abuse, alcohol and drugs. Their health needs are many, especially when they get HIV. Although many of them do have HIV it’s very difficult for them to get themselves tested because often they have to go to the government hospitals to get themselves tested and they just won’t go there because they feel so humiliated. So the issue is to help them get themselves tested and then if they are tested to be HIV positive then to convince them that they need ART, to be regular on ART, to monitor that.
Then, of course, even though they are on ART they have, because their immunity is still low, they have numerous opportunistic infections. So to provide them a safe place, a place where there is no discrimination, where they feel they can go for good treatment, that’s a big need that we try to cater to.
We also find that they are very economically vulnerable, there’s hardly any secure work for them. So they really need… even if there are jobs then the levels of literacy are so low that they wouldn’t be able to fit into those jobs. So that’s another big issue that they face.
These issues are so complex and there really needs to be a palliative care service that is specifically looking at transgenders, reaching out to them, creating a safe place where they can come for care and caring for them holistically in a comprehensive way. So that’s what we’ve been trying to do.
What treatment is available from the government and what has to be paid for?
ART is anti-retroviral therapy and that’s the treatment for HIV. It is not curative but it helps control the viral load, raises the CD4, improves immunity and so expands the lifespan of people with HIV. ART is available freely in the government hospitals and Delhi has nine ART centres. Anyone with HIV can be registered at these ART centres, it’s freely available. But for transgenders it’s a real challenge because they hesitate to go to the government hospitals. So one really has to support them in that first decision to go so often we go with them or we connect them with other transgenders that are also receiving ART so that they can be a support for them. That is the ART treatment that the government hospital provides.
But even though ART is available, ART raises the CD4 level, improves immunity but it only raises it up to a certain level, it doesn’t bring it up to normal levels so their immunity continues to be low. Many of them are also in settings where there’s a higher chance for them to get infections so the higher chance for getting infections alongside a lowered immunity means they get opportunistic infections again and again. Opportunistic infections are infections that they get because of a lowered immunity. So the need for a place where they can get this; government hospitals are there but the reality is that the government hospitals are extremely crowded, these are general hospitals and patients with HIV need to compete with other patients. So they can only get admitted if they are extremely sick and if they know their way around and if there’s a caregiver. But often none of these three are there and so they need a place where they can be taken care of without discrimination and where even if they are alone they can just walk in and know they can be cared for. So that is how we support the government; the government gives the ART, we don’t provide the ART, but we support them by treating opportunistic infections.
We’re not a government organisation so we have to raise funds for this. So our whole medical set-up, we raise funds for that but that is difficult because today there are very few funding organisations funding HIV. So that’s the challenge we face where we continue to see so many patients with HIV who need medical care but access for funding for that medical care is not so easy today.
