I well remember when the thought that I could have AIDS first occurred to me. It was 1986 and I was newly married. I had gotten pregnant by an East African man two years earlier and my husband had fallen in love with both me and my baby.
All seemed well, until I began paying attention to the news that AIDS had first appeared in sub-saharan Africa among heterosexuals. I dutifully got tested, then waited anxiously for the phone call that told me I was not infected.
Other people I knew heard different news. There were whispers that a high school classmate who had been an intravenous drug user and died of a drug overdose had taken his own life after getting the diagnosis.
It was a scary time, especially for anyone who had been anything but virginal.
Tyler Alyxander,* of Bayville, went to high school in Brick and graduated with my husband in 1979. He got married, had a child, and then separated from his wife. He came out as gay and, in 1983, began performing as a female impersonator.
“I make no qualms about letting everybody not only know that I’m gay and that I perform, but this past June was the 20th anniversary of my HIV diagnosis,” said Alyxander when I talked to him at a benefit he was hosting at The Mansion in Brick for the Beacon Light Fund, an organization he helped found as part of the Miss Gay New Jersey Association.
“I know exactly who infected me and through an act that probably should not have happened,” Alyxander said. “He found out six months after we were together that he was positive. Six months later he was dead.”
That was in 1989. In 1991, Alyxander was hospitalized with pneumonia. When a doctor told him he was HIV positive, Alyxander replied, “Yeah, OK.”
Facing the Future with HIV
A difficult childhood instilled in him the resilience he needed to overcome challenges in his adult life, he said. He earned bachelors and masters of Social Work degrees from New York University and began serving the HIV/AIDS community as a case manager and educator.
“The biggest factor that came into play after my diagnosis is the fact that I'm the type of person that honestly and truly believes in ‘it is what it is,” said Alyxander.
The Beacon Light Fund provides grants of up to $500 to people with HIV/AIDS to help with their rent, utilities and other pressing bills, Alyxander said.
“Society seems to think that just because on the outside we look great that everything is fine, but there are days where I still feel my mortality. I wake up and I just cannot move,” he said.
Alyxander recently moved back to Ocean County from Hudson County, where services for those living with HIV/AIDS are plentiful, he said. He was surprised by how little, in comparison, he found here.
While assistance may be more plentiful in North Jersey, it is available in Ocean and Monmouth counties.
“Once somebody is diagnosed with HIV, we have a full-service HIV clinic for any Ocean County resident that is HIV positive or has full-blown AIDS that does not have insurance,” said Leslie Terjesen, the public information officer for the Ocean County Health Department.
The Toms River clinic is staffed by infectious disease specialists, social workers, nurse practitioners, and case managers. Its provides services like nutritional counseling, transportation to the clinic, and dental referrals, she said.
OCHD also participates in the AIDS Community Care Alternatives Program, which helps people with HIV/AIDS stay in their homes, as long as they are not living alone.
“A person usually does better mentally and physically if they can live at home rather than in a nursing home. Plus, it’s certainly much more cost-effective,” said Terjesen.
A Tuesday night support group has been in operation since the 1990s, she said. Many parents whose adult children died in the early days of the pandemic are still active in the group, she added.
OCHD offers confidential, free HIV testing and counseling twice a week or by appointment.
There are also HIV/AIDS clinics at Monmouth Medical Center in Long Branch and Jersey Shore University Medical Center in Neptune.
In Asbury Park, The Center has been in operation since 1992. Housing and prevention of homelessness are the biggest needs it meets for Monmouth County HIV/AIDS sufferers, said George Lowe, its director of client services. The Center also helps clients manage benefits and claims, offers temporary financial assistance with utilities, and serves about 40 meals per day.
More than 60 volunteers staff The Center.
“They come for all different reasons. Some of them, it’s faith-based, or their church organization. Some of them do have a connection, a family member or relative. We have a lot of retired nurses that moved to the Shore area. For some reason nurses like to volunteer,” said Lowe.
The Center is open Monday through Friday and offers clients two daily snacks, a hot lunch and microwavable frozen meals to go. Clients who receive financial assistance are carefully screened, while those receiving meals only need a referral from their health-care provider, he said.
Facing Old Age and the Economic Downturn with HIV/AIDS
The economic downturn has made life more difficult for people living with HIV/AIDS, Lowe said.
“Housing is really a big issue for a lot of people with the virus right now,” he explained. “A lot of them may no longer be able to continue to work, but there’s this long arduous process to get on social security disability, and they’re going to need help in the interim.”
As people age, more doctor visits are required to monitor medication side effects, Lowe said, and when they're looking for work, they worry about accruing sick time for these visits and whether or not their health will hold out.
“Someone may come to us who’s been positive for 25 years and they’re in their 50s. They’ve lost their job and medically they’ve got all these strikes against them,” he said.
State and County Statistics
There were more than 75,000 cases of HIV/AIDS in New Jersey when the state Department of Health and Senior Services last reported on the virus in December 2010. Three thousand five hundred eighty-eight of those cases were in Monmouth County and 1350 were in Ocean County.
Men over age 40 and people of color accounted for two-thirds or more of the state total. Injection drug use and sexual contact remained the major modes of exposure, though transmission through IV drug use was decreasing while sexual contact transmission was increasing. More than 14,000 cases were transferred through heterosexual sex, just more than 8,000 cases were transferred through IV drug use, and about 7,800 cases were transferred through male-to-male sex.
The average number of annual pediatric infections in 2000-2008 was 84 percent lower than it was in 1993-1999, NJDHSS reported.
From Death Sentence to Manageable Disease to a Cure
Everything shifted with the advent of antiretroviral medication in 1995, Lowe said. Before that, people often weren’t diagnosed until they experienced significant symptoms, he said, but after 1995 people went back to work.
“In the community, we really picked up on getting people tested and getting them in treatment as quickly as possible. Now, there’s very little interruption in their life. It’s not a death sentence like it was prior to 1995. ... Even if you look at the quilts, the amount of deaths, the date of births: 80s, ‘94, ‘95, it starts to drop off, ‘96 they may not have made it; they were just too sick. But then you really start to see the numbers. People still die from AIDS-related illness, but not at the rate they were,” said Lowe.
His biggest motivation for working in the field is his believe that there will be a cure.
“I started this when I was very young and I want to see it through to the end,” Lowe said.
For Alyxander, helping others in his situation is “gravy,” and probably one reason he is still “on the planet.”
A lot has changed since 1986, and only because people like Lowe and Alyxander kept believing it could.
*Note: Tyler Alyxander requested that his stage name be used in this article.