BARCELONA — Cheyutha, an HIV self-help group in Hyderabad, India, believes matchmaking marriages between diagnosed men and women is one way to prevent the spread of the disease and combat discrimination.
The founder of the community-based organization, Laxmi Priya Kagitha, has so far matched 65 marriages between HIV positive men and women and claims the controversial process helps couples not only fit into a society that sees marriage as the norm, but alleviates depression, and helps prevent transmission of the disease.
“A [HIV] positive marriage helps young, infected people live with dignity. It also helps prevent new infections in young people and it being passed on to newborn babies,” said Kagitha. She explained that by facilitating marriages between HIV positive people, it stops them from feeling like they must keep their diagnosis a secret in order to find a spouse, marry an HIV negative person, and thus potentially put them, and any possible children, at risk of carrying the immunodeficiency virus.
At the end of 2016, there were approximately 36.7 million people living with HIV worldwide, 2.1 million of those were living in India. The majority of affected people, some 20.9 million, were being treated using antiretroviral therapy, or ART, and able to manage the physical effects of their disease but, according to data from UNAIDS, there were still 62,000 HIV-related deaths that year in India.
In terms of prevention, awareness-raising activities, pre-exposure prophylaxis, and sexual education are all well-known methods practised around the world. But marriage matchmaking — a culturally conservative social practise common in India — is one that some in the global development community are likely to see as controversial.
“A [HIV] positive marriage helps young, infected people live with dignity. It also helps prevent new infections in young people and it being passed on to newborn babies.”— Laxmipriya Kagitha, founder, Cheyutha HIV self-help group
Speaking of how this matchmaking process began, Kagitha said: “Many women visiting our organization to access HIV services were widowed at a very young age, and also many young men who are infected with HIV would also visit our organization.” From there, Kagitha explained that the group realized they could play a vital role in educating attendees, arranging marriages, and counselling them to lead a healthy life. “This way the couple can understand each other and continue with proper medication.”
Kagitha explained that there is still widespread stigma and a lack of knowledge around the disease in India, despite medicines being available to both treat and prevent HIV. She said it’s this discrimination that makes it difficult for an affected person to have a relationship with an HIV negative person and disclose their diagnosis. To cover it up, the individual may stop treatment altogether, stop visiting their self-help groups — the groups’ locations are often easily identified as being centers for those with HIV — and potentially pose a risk to their partner.
“They say that there is a reduction in the stigma and discrimination, but it’s not true: Why in some hospitals will they still not do surgeries on HIV positive people?” she said. “If you’re not married, people will ask why aren’t you married, then their family relations will ask why. They won’t want to tell of their diagnosis for fear of discrimination, but after this marriage people will think they are “normal” people.”
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Established in 2003, Cheyutha — which was originally funded by international charity Lepra before recently becoming autonomous, a process Lepra encourages — keeps a database of marriage applications. Many of these come from their group members, which are predominantly female, but they recieve male referrals from local testing centers. If Kagitha believes there is a suitable match among the database, the group will introduce the couple, counsel them and their families, and ensure they’re both happy to proceed with nuptials.
“The process of arranging a positive marriage is long and hard. Most of the time there is lot of convincing to be done, especially with the parents,” Kagitha explained, emphasizing that multiple counselling sessions on health, medication, safety precautions, contraception, and pregnancy are needed. This is supplemented with pre- and post-marriage home visits and follow-ups. Family approval, along with that of the potential husband and wife, are needed before the group goes on to assist in wedding preparations.
While Cheyutha says it has so far successfully set up 65 marriages, Ashim Chowla, Lepra’s chief executive in India, said marriage on its own isn’t something to aspire to, but should the couple genuinely fit together, it can be a great thing.
“Whenever I work with men or women living with HIV, I think to myself for God's sake, they must fall in love, they must have feelings, and they should have a way to express those feelings,” he said. “Unfortunately, because of their condition, they themselves prevent those feelings or they are unable to take those relationships forward.”
To many outside India, arranged marriage may seem like an extreme method of preventing the spread of disease and avoiding social exclusion. Despite consent by the bride and groom being needed, often outside pressure and coercion from families and societies mean the parties are entering into the legal commitment without actually wanting to. This can lead to numerous problems including depression and abuse, but Salil Panakadan, UNAIDS regional program adviser for the Asia-Pacific region, said that in India the data shows that the majority of all marriages in India are indeed arranged.
“In a country where more than 90 percent of marriages are arranged, it’s no surprise that people with HIV are arranging their marriages. Marriage yes, it does happen, it should happen, and they’re using the method that the community is using.”
Panakadan said that modern prevention methods, including pre-exposure prophylaxis medication, should not prevent HIV-positive people from marrying or engaging in sexual relations with people without a diagnosis. But Panakadan added: “If self-help groups feel more comfortable finding people facing similar issues in society and life, we encourage any service that could be of help to them, including matchmaking, which is a tradition in India.”
In terms of conceiving children, whether one or both parents has a diagnosis, the disease can be prevented from being passed on using various methods, explained Panakadan. “If you take PMTCT — prevention of mother to child transmission treatment — then the chances are already less.” This is a program providing ART to HIV-positive pregnant women. Combined with the negative person taking pre-exposure prophylaxis, the risk of transmission to a child is significantly reduced.
“You don't discourage anyone who is positive from having children, as long as they follow the PMTCT guidance which is regular science,” said Panakadan.
Kagitha believes if there are more groups in other communities facilitating HIV-positive marriage matches, then there’d be improved prevention and offers advice for setting up such services.
“When the people come to the organization for a positive marriage, we don’t know what they have in their minds, and we don’t want to waste their time so you should ensure they fill out a positive marriage application and take a photograph of them. Then do a home visit to see what they’re actually doing and how their family is supporting them.”
An alternative and less legally-binding method of preventing transmission could be combating stigma in India so that individuals feel they can openly disclose their diagnosis to a potential mate and then take the necessary precautions. UNAIDS, the National Aids Control Organization of India, and End AIDS India are all organizations working to provide education around HIV and reduce the social discrimination faced by those who are HIV positive, and it seems progress is being made. In 2017, the HIV and AIDS Prevention and Control Act was brought into force making it illegal to discriminate against people living with the disease in the workplace; denying them access to education, housing and health care, denying entry into a business, or the right to stand for or hold public or private office.
Lepra’s Chowla, however, said that in some places in India there is still a misplaced assumption that the HIV epidemic is finished.
“In fact, the HIV epidemic is on the rise in the country because the foot has been taken off the pedal,” he said. “In particular, what is happening is that the focus on the country has shifted from the prevention aspects to treatment. Treatment can also be very good prevention, but the entire concept of social behavior change has been completely done away with.”
Panakadan, however, explained that awareness raising is a key focus within the region for UNAIDS, but that it doesn’t “spray” the general population with its activities, and instead takes a more targeted approach.
“The so-called general population is not as much affected as key populations like sex workers, men who have sex with men, injecting drug users, transgender people, prisoners, and so on,” he explained, stating that people in these groups are up to 50 percent more likely to acquire an HIV infection than those in the general population.
Using targeted social media and school education in the Asia-Pacific region, UNAIDS aims to raise awareness of HIV, reduce discrimination around the disease, and overall prevent transmission.