The Cost of Having HIV

I recently had a conversation with a young man who was recently diagnosed as having HIV. For his privacy I'll call him John. He lived here in Brooklyn and was 22 years of age. Upon hearing him having the disease and being able to relate to him as I had it at a young age, my main concern was his state of being and how he was handling the news.

To my surprise he was nonchalant about it. In fact what he told me next shook me more than knowing he was infected. He told me that he didn't mind having the virus because just like his friends he could now get benefits from the city.

In his mind he saw having HIV as an advantage and a easy access to housing, medical care, transportation and other benefits that other agencies provide for those living with HIV. It was like he had hit the jackpot.

I had heard about this new trend but there had seemed to be two sides to what he was saying.There's those who say it's not as easy to get benefits as some may think and then there are those who say that having the disease is a financial unburdening.

Yet working at a HIV organization I saw some of the points he was talking about. There seemed to be an incentive to having HIV. At many agencies in NYC to encourage you to find out your HIV status they provide you with an incentive which could be anything from a metrocard which is used to get on the subway or maybe a gift card that can be used at any store. Some will even throw in a movie ticket. 

Personally I have always been on the fence for providing incentives for people to check on their health. Why get tested for what you will get instead of getting tested because you want to know what the status of your health. Why be rewarded for taking care of yourself and what long term monster are we creating?

The agency I work at is not immune to what I speak of and there has been many internal discussions on whether we should foster people to come seek support by dangling a carrot in their face.

Other support groups here in NYC attract members with enticement of food, free transportation and other gifts. Most of the time agencies do this to compete with other agencies as it all comes down to numbers. Based on their contract with their funders they have to have a certain amount of people in the groups. Therefore many agencies compete with each other to offer the best incentive and the clients know this. This was confirmed by John who had all the agencies and what they offered down to a science. 

Although he already knew his status, he knew that in a single day he could go to this agency to get a gift card, then he could make his way to another agency and get a HIV test and get another gift card and head uptown to fill out a survey and get another incentive, ending his day by going to a group and getting another metrocard and a free meal. this is just in one day.

I do have to say that not all people are like John. there are some with sincere needs as they may not have the economics to have a healthy meal or need help with transportation, yet there seems to be a growing trend of people like John who see the benefit of having HIV.

It's sad as you think of others who may be homeless or kicked out of their home because of their sexuality and of those group, not all, but some having the mindset that if I get HIV I don't have to worry about being homeless as I will be provided for.

What many don't think of is the long term effect of having HIV. Yes the rewards may be there now but with so many cutbacks each year, many agencies are now starting to cut back on incentives as well as cities, especially here in NYC is starting to make it hard for that easy ride. What will those folks do then. Will they still manage their health with no incentive.

If I could rewind the clock for John, I would tell him that it was not worth it. The easy road is usually the hardest. Yet when you're homeless and have no other source of income, what is one to do. It's easy for me to judge as I'm not in their shoes and I've been blessed with having comforts.

Yet here in NYC we have to look at the long term enabling we are doing. Other states and regions may not offer what NYC does but looking back at NYC we have to instill in people to find their status on their own free will and not because of a reward. We have to encourage people to go to support groups not only for the food and gifts, but because of the help you will receive in dealing with this disease.

I don't want to sound like a old man but when I was positive and in a support group in my twenties, living in Minneapolis, I went there to lessen the loneliness of having HIV. Some days at the group you were lucky to get a potato chip. But that was not my reason for going.

And again I speak from experience as I saw someone leave when they came to the agency and discovered no metro cards were being handed out that day. 

The cost of HIV seems to be free right now but we, meaning funding sources and agencies that service those with HIV have to go to the classic model of teaching one to fish and not giving it to them. If not we're setting them up for a fall and have no one to blame but ourselves