HIV doesn’t have to stop you from living a long, happy and fulfilling life. With the right treatment and support, it is possible to lead a regular life, with marriage and companionship.
Losing your inhibitions and speaking to trusted friends or family when you feel scared and sad can indeed help you work through your emotions. This is all the more terrifying when you happen to be HIV positive.
But, take heart.
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HIV positive doesn’t have to stop you from living a long, happy and fulfilling life. With the right treatment and support, it is possible to lead a regular life, with marriage and companionship.
The pervasive silence surrounding the HIV epidemic allowed a limited public debate and led to continued stigmatisation of those affected. However, things are looking up now as new drugs can dramatically lower the number of new HIV infections and also help people with HIV live longer. Also, antiretroviral prophylaxis treatment for HIV positive pregnant women can reduce the risk of transmission from mother to child.
Alongside these new life-saving treatments, we also need to improve the quality of life of such people.
In this context, it is heartening to note that the prestigious Indian Institute of Management, Ahmedabad, (IIM-A), in August 2018 launched an exclusive matrimonial web portal at its campus.
The portal was launched by Surat-based NGO Gujarat State Network of Positive People (GSNP+) to facilitate marriages among persons living with HIV (Human Immunodeficiency Virus).
The IIM-A’s Centre for Management of Health Services (CMHS) was consulted by the GSNP+ to develop the portal. The premier institution worked on it for two years before introducing this new initiative.
Professor Errol D’ Souza, Director, IIM-A, termed the effort as pathbreaking and said that partnering for this cause by IIM-A was like a breath of fresh air.
People with HIV can simply register on the portal while coordinators of GSNP+ will then work on the entries and try to facilitate suitable alliances.
“This initiative will be worthwhile only when care is taken to keep the data confidential. The administrators will ensure that profiles and information of those registering are not made public. This effort involves technology but it has a major human interface. Since GSNP+ has worked in the area for over ten years, they will use the portal to further the cause,” observes Prof Rajesh Chandwani, who heads the CMHS.
“Most of the HIV figures in India are hidden, so we do not know the exact numbers. The official figures cited are wrong, since not all HIV positive people register themselves with antiretroviral centres (ART centres) run by the government and it is high time that research and medical practice go together to provide the best possible environment for persons with HIV,” he adds.
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The security cost of the portal has been financed by Mr Govind Dholakia of Sri Ram Krishna Exports, a leading diamond trading group from Surat, as part of its CSR activities.
And the mind behind this refreshing idea is young Daksha Patel – who founded GSNP+ back in 2003.
“After GSNP+ came into being, we came across HIV positive people who had to fend for themselves as their families and communities were not supporting them, especially in matters of marriage. That is how we set up a marriage bureau for them in 2005,” says Daksha. She has busied herself with the cause of supporting people living with HIV.
The web portal is the outcome of this non-profit’s experience with the marriage bureau.
“Earlier, we did it all manually and matching the couples was rather difficult. With the portal, it would be easier to find matches. Care has been taken on how much information the candidate has to share. They won’t have to share photos; and to ensure that their data is not misused, the admin will approve or reject applications. Even after registration, access to profiles will be confirmed by the admin,” informs Daksha.
Registrations on the portal poured in since it was launched in August 2018. While entries are being sorted for matchmaking purposes, the initiative is bearing fruit.
Sunil Goswami, 28, programme officer for the Vihaan wing of GSNP+ (which works to improve the quality of life of people with HIV) found his match in Pooja Tandel, 25.
He says, “I was looking for someone with HIV. So, the portal came as a blessing. Ever since I learnt that I had this disease, in 2009, I had the feeling that finding the right girl would be a lot more difficult. The GSNP+ portal has helped me, and I am now going to marry her. Otherwise, the HIV+ people feel embarrassed to disclose their identity, which makes marriage a difficult proposition.”
Pooja, who graduated in social welfare, feels equally rewarded with the launch of the matrimonial portal. She says, “I felt ashamed to be open about my condition for fear of embarrassment and humiliation. I was dealing with deep emotions. Thanks to the GSNP+ portal, I now feel free. I am relieved as the prospect of marriage has been made easier; it has been life-changing indeed.”
Before the launch of the portal, the GSNP+ was able to help 245 couples tie the knot. Its network is spread over all the districts of Gujarat and also has centres in several states of India.
GSNP+ is a community-based non-profit organisation, primarily engaged in improving the quality of life of people living with HIV. It also endeavours to enhance the enrolment of HIV persons with the state government’s Antiretroviral Centres (ART) for treatment through counselling.
Dr Keyur Shah, a qualified dermatologist who treats HIV, busted some myths about the condition.
“People in our society harbour misconceptions about HIV. Firstly, there is no stigma attached to it as it can be contracted even through blood transfusion or intravenous drugs. It’s not even fatal as patients can live a long life with regular medication. Thirdly, an HIV person need not necessarily look emaciated and weak. Lastly, that they can’t marry. They certainly can marry and have a long, happy life,” Dr Shah assures.
The doctor emphasised the matrimonial aspect, saying that if either of the spouses is HIV positive, their child would not be born positive.
“With a count below 20 (which shows an index value or range of infection of an HIV person) an HIV person can live a long life with a minimum prescribed medication. And it won’t even develop into AIDS,” informs Dr Shah.
As for the research on developing vaccines, he says that there are subtypes at work, which require individual treatment since they keep changing faces, which makes it all the more difficult.
“There is no cure for HIV, but why worry when a person can live a normal, long life with just a tab a day,” assures Dr Keyur, who has treated as many as 10,000 HIV patients.
He, however, laments over the poor allocation for the treatment by the state and national AIDS control societies while setting aside large funds for awareness programmes.
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Any government’s vision for universal healthcare can only be realised with robust health infrastructure that provides patient-centric quality care.
(Edited by Shruti Singhal)