Services Improve for People Living With HIV/AIDS in CNY, Though Stigma and Struggles Remain

Feb 15, 2019

Spreading awareness and working to stigmatize HIV/AIDS are critical steps in getting people more comfortable with getting tested and accessing the health care they need.
Credit CNY HIV Care Network

People living with the AIDS virus can have health challenges, but also struggles with work, housing and other needs.  At the same time developments in medications to control the virus hold more and more promise for a longer, richer life.  

There have definitely been some positive developments for people living with HIV or AIDS in Central New York.  But for the people with the virus and those providing health and human services to help, there are still roadblocks to that basics of a place to call home, a place to work and simply living a full life.


One area that’s really changed for people living with the AIDS virus is relationships.

“Looking at it from a relationship standpoint, so many people lived with the fear that they would infect someone else.”

But Rich – who’s been HIV positive for 25 years – says new developments have greatly reduced those chances.  The federal CDC last year confirmed what is called U = U. That means if your viral load is Undetectable the disease is Untrasmittable.

“Those of us within the community I think, or some of us, were still a little skeptical, just because for years being HIV was being HIV positive. You lived your life differently.”

But Rich explains if people are up to date on testing and keep current with their medical regimen, they can rest mostly assured.

“It has allowed folks to be a little more comfortable with who they are. For many people it has sort of broadened their relationship options.”

He adds each individual would have to make a choice about sexual practices.  The partner of someone with HIV can also now take what’s called PreP – Pre-exposure Prophylaxis.  Prep is taken by someone who’s not infected and the CDC reports it’s more than 92-percent effective in preventing infections from high-risk individuals – those with a partner who’s HIV positive. 

There has also ben more attention – and more resources – for services to people living with HIV since Governor Cuomo’s End the Epidemic Initiative.  But that doesn’t mean there aren’t concerns. 


Rich and about 60 others were in Syracuse this week for Hearts on Fire – a conference to examine the effectiveness of services, needs not being met … and human rights – which can be trampled on in work settings.

How HIV is transmitted.

“For me, having been diagnosed over 20 years and worked in the medical field as well, there is a lot of discrimination as far as the medical professionals with people living HIV and AIDS.”

Karen is from the Finger Lakes. She remembers being dealt with differently at a time when her HIV status was not really general knowledge.

“And when the rumor got out that it was suspected as far as me being positive, I was faced with some discrimination with my coworkers. I had to figure out how to deal with that.”

John Wikeira, who heads the CNY HIV Care Network finds this is one of the areas in which people need more knowledge and awareness.

“There’s a lot of questions around housing, there’s a lot of questions around employment, and especially with The New York State Peer Certification Program, via a New York State Certified Peer, people that are looking to get back into the workforce may say, ‘Gee, what are my rights for employment as an HIV positive person.‘”

On the housing side, a lot of funds recently have gone to the New York City area.  Lewis Watts has provided support services for 18 years – and he notes with lower density of people living with AIDS, local areas have been neglected.

“We lack housing. It’s like maybe two houses in the Syracuse region, and that’s just terrible. We have funds and we need to find housing for these people.”

An estimated 1.1 million people are living with HIV in the United States.

And a new problem is emerging among those who have lived being HIV positive for years.  Remember Rich … who works in health care with HIV patients.  His own outlook on life is very different now that having the virus is considered – and treated as – a chronic condition, not a terminal one.

“The biggest thing I face is in 1993, when I was diagnosed with HIV, it was more or less a 10-year life expectancy. Well now it’s over 25. I’m still working full-time, which I probably will be until the day I die because I never planned for retirement.”  

One last area many of the attendees agree upon is the remaining, lingering stigma around the disease.  David from Syracuse notes it not only continues to bring discrimination coupled with ignorance … it can even impact someone’s actions around their own health.

“Having the stigma of having HIV not be that death sentence, not necessarily mean that you’re not going to have a full productive life – and people are afraid to get tested. People are afraid to know because they’re afraid if they know, then they’re going to die.”

The Hearts on Fire conference emphasized health and support groups working together to raise awareness about services available to people living with AIDS – while also hoping to increase public knowledge about the disease and some of the new realities of those living with it. 


According to the CDC:

  • In 2017, 38,739 people received an HIV diagnosis in the United States and 6 dependent areas.
  • HIV is largely an urban disease, with most cases occurring in metropolitan areas with 500,000 or more people.
  • In 2016, there were 15,807 deaths among people with diagnosed HIV in the United States and 6 dependent areas. These deaths may be due to any cause.
  • 51% of youth ages 15 to 24 living with HIV don't know it.