Jerry Hughes, an American citizen, was diagnosed with HIV in 2004. Jerry, who was working as an advertising professional in the United States of America, chose not to get bogged down and took the control of his life in his own hands. By his own confession, the American, who would visit Nagpur often for speaking at youth camps, fell in love with Nagpur on his very first visit to the city. On a mission to eradicate the stigma related to HIV and AIDS and help affected people, Jerry founded the Hughes Foundation in Nagpur, which also has its presence in the US and Africa. One and half years back, Jerry founded the House of Hope in Nagpur. The house, today, is home to orphans suffering from HIV. In an exclusive interview with Nation Next, Jerry Hughes speaks about his own fight with HIV, his work through Hughes Foundation and the House of Hope and the stigma prevalent in the society relating to HIV and AIDS. Excerpts:
‘House of Hope’ is home to kids suffering from HIV. Tell us more about it?
Before setting up House of Hope, through Hughes foundation, we would focus on partnerships with other orphanages and work at places where HIV organisations worked, but I felt a certain lack of satisfaction. So, I started House of Hope, which provides shelter to kids suffering from HIV. We also take care of their schooling, different recreational classes and other necessities of their life. The basic difference between House of Hope and any other organisation is that each and every person here is affected with HIV in some or the other way. These people can discuss and talk freely with each other as they share the same problems.
You yourself are HIV positive. What health-related problems do HIV patients go through? How does it affect a person emotionally?
For me personally, I’ve had no physical problems because I have always received proper treatment. When a person accepts the fact that he/she has HIV and takes the proper treatment, the person can live a very normal long-term life. If somebody has HIV and they don’t know what HIV means and fail to take medical treatment, they can face a lot of physical and health related problems like cancers and tumors. For me, HIV has affected me more emotionally than physically. After the detection of the disease, my family members distanced themselves from me, which caused me a lot of emotional stress.
People usually perceive HIV and AIDS to be the same thing…
I’ve never had AIDS. I was diagnosed with HIV. There are a lot of immunity related problems a person with HIV goes through. If one does not get proper treatment, they can have AIDS. Having AIDS means that a person has a very weak immune system and his/her inner body is substantially damaged because of the disease.
What kind of discrimination do people suffering from HIV face from society?
Due to lack of awareness, people usually treat HIV patients in a discriminating way. They don’t interact with patients thinking that they may get infected by the disease themselves, which is certainly not the case. The actual problem is the stigma prevalent in the society. Money, social status and many other factors also play an important role in the way people treat those suffering from HIV. If your financial status is good, you have a job and a proper medical treatment, people will treat you the same way as someone who does not have HIV. But if you are poor, people might treat you differently. I’ve never faced such treatment from the society and neither any of my kids from House of Hope as we always managed to give them proper treatment. Different stories of people dying and getting cancer is the main cause that creates stigma among people and fear of HIV. Also, most people have never met someone talking positive about HIV.
What according to you should be done to spread awareness among people about HIV and AIDS?
There are two ways through which we can spread awareness about HIV. Firstly, we can support the people diagnosed with HIV and ensure that they live a normal public life. There are 42 million people in the world who are living with HIV and India ranks third with most number of AIDS and HIV patients. If we can talk to them and help them feel normal about their problem, we can prevent the spread of HIV.
You run a fun and informative video series ‘HF Scooter Cam’ on YouTube. Tell us something about it.
Scooter Cam is a fun project wherein we ask common people the usual questions that arrive in our minds when we think of HIV. As part of the ‘Scooter Cam’ series, we, in the past, have asked Nagpurians questions like – Can a mosquito bite cause HIV? The idea is to break the ice by making everybody relaxed and then talk about HIV. I started it to prevent HIV being perceived as so scary.
Also, I feel, being a foreigner, talking to people here about HIV is a bit easy for me as people readily accept the things I say. If I may have been an Indian affected with HIV, I might have got pushed away by the people. My identity as a foreigner changes the way people think of people living with HIV. As a foreigner, I think, a foreigner gets more attention from people in India, which I find very interesting.
There are several countries that put a ban on HIV and even deport citizens infected with HIV…
In a developed country like America, people with HIV could not freely move around cities till 2009. But President Obama then lifted the ban, which was enacted in 1987. People forget that even America was one of those countries with a ban on people with HIV traveling to their country. Even I was stopped from entering some countries, while traveling.
Having said that, I think, things are changing now. But some misconceptions and laws are still there, which keep reminding me that that the country I belong from also bans people diagnosed with HIV. It’s of course not right but I think fighting with it in a positive manner matters more. Instead of wars, fighting, screaming or hurting people, my way of reforming the world is through creating more units of ‘House of Hope’ and foundations to support people with HIV.
What changes have you brought through Hughes foundation? How do you manage to get funds for the same?
The biggest change that Hughes Foundation has brought is that it has been successful in creating a positive influence among people whether they are living in India, South Africa or America. I think the biggest change that can be brought whether you are living with HIV or not is that everybody can learn something with the help of the bad things, which have happened taken place in their lives. We all go through hard times but if someone can get inspired through my story or the children at House of Hope, it would be great.
The funds we get for Hughes Foundation or House of Hope are 100% from the donations. There is no government or business funding. Our way of communicating with people is through social media.
For the future, we plan to create many more units of House of Hope. We are already in the process of creating the 2nd House of Hope. Our focus will be on kids who have abandoned because they suffer from HIV and on adults, who are struggling to find a job.
You have lived with HIV for 14 years now. How did HIV change your perspective towards life?
When I was diagnosed with HIV, it gave me a sense of purpose in life. It gave me the strength to do something different rather than being buried with negative questions in my head. My message to everybody would be to take something bad in life and turn it into good by creating a purpose out of it.