It’s not obvious to today’s young people that HIV can kill you, says New York City fashion designer Jack Mackenroth. Hoping to help, Mackenroth, who was diagnosed as HIV positive 24 years ago, is using his star power to attract those who are vulnerable to a unique health care center in Norwalk.
Mackenroth, a swimmer and model, was open about his HIV status while on TV’s “Project Runway” in 2008, and has become a source of inspiration for many people afflicted with the disease. He has used his celebrity status in HIV activism, including his latest project, promoting Norwalk’s Circle Care Center, which is modeled after the Los Angeles Gay and Lesbian Center.
“We’ve got some (HIV) treatments that are very successful, but because of that the young generation hasn’t seen the devastation of the ’80s and ’90s and what AIDs can do to someone,” Mackenroth said. “I think they have a more cavalier attitude and I think it really is important to stress getting tested, getting treatment, protecting yourself, fighting the stigma. I think a project like this — it’s not intimidating. People can come and get information, and then, after that, if they need care they have the follow-up care.”
The Circle Care Center at 618 West Ave. in Norwalk combines the services of World Health Clinicians (WHC), the Triangle Community Center — described as Fairfield County’s leading provider of LGBTQ programming — and the Mid-Fairfield Aids Project under one roof in a surprisingly modern and spacious facility.
Dr. Gary Blick, WHC chief medical officer, said the Fenway Community Health Center in Boston is similar the Circle Care Center, but there’s nothing else like it in a city the size of Norwalk.
“There’s no other model like this, not even in New York City,” Blick said. “We’ve got something very unique and the outreach model is also very unique.”
Blick has seen more than 3,500 people with HIV/AIDS over the past 29 years, said Stephanie F. Carmody, Circle Care’s press relations person. The center serves about 1,200 patients, about 450 to 500 of them with HIV/AIDS at any given time, she said. Most patients are members of the LGBTQ community, predominantly from the tri-state area, but “more broadly ranging from central New Jersey to upstate New York, to Vermont, Boston, Providence, Long Island, more than 100 patients from New York City, and from as far away as Fort Lauderdale, Dallas, Detroit, Tampa, and Palm Springs.”
Mackenroth will be an integral part of the center’s outreach model to MSM (men who have sex with men), ages 16 to 30 years old, she said.
Blick said that the outreach is important.
“HIV went off the pages in the mid-‘90s,” he said. “Everybody thinks that it’s stopped. Then we lost a whole generation of kids at that time because, if you were 12 in 1996, you’re 29 now. You didn’t know about death and dying back in 1996, you didn’t know about it now. The whole idea is getting the message out that there’s no panacea for HIV, that you have to deal with the long-term toxicities of it, the rapid aging that goes along with being HIV-positive, and why not build up self-esteem, self-respect for one another and try to build that sense of community again so that we have everybody practicing safer sex and protecting each other.”
Blick said the target age group is the largest growing group of people that have HIV. There are a quarter of a million people who have HIV and don’t know it, he said, with 78 percent of them under the age of 30. The majority, two-thirds, are men who have sex with men.
“The problem is we have a million people positive in this country and only 28 percent of them are ‘undetectable,’” he said. “We lost the message somewhere — 720,000 or some odd people are not on drugs.”
By undetectable, he meant people who were diagnosed as HIV-positive yet turn up HIV-negative because of the three-drug cocktail they are taking.
Mackenroth, 44, said the virus no longer shows up on his blood tests, but there are younger people walking around with “crazy” viral loads.
“They’re either unaware, in denial, don’t want to get tested, or don’t have access to care,” he said.
When he was diagnosed he didn’t expect to live more than five years.
“Before, in the ’80s and ’90s, we wanted to get tested but there weren’t many options and the outlook wasn’t great if you did get tested,” he said. “Now we have to keep reminding people that is a much different landscape than it used to be.”
Nancy Guenther Chapman is the editor of Nancy On Norwalk, a news site.