Twenty years ago, learning you tested positive for HIV or AIDS likely was a death sentence. Prior to the advent of critical drugs, the death rate for those infected with the virus was nearly 90 percent in New Jersey.
Now, complex drugs and proactive health care regimes mean that patients who seek treatment can live for decades.
That doesn’t mean the disease has gone away. For those infected with the virus in South Jersey, including Atlantic City, which has the second-highest rate of infection in the state, living with HIV or AIDS still is a stressful and draining life.
While the number of new reported cases of HIV in New Jersey has dropped by 85 percent since 1990 — fewer than 700 new cases were reported in 2011 — health experts say only 80 percent of those infected know they have the disease.
AIDS still carries a stigma, so to tell this story, The Press took the unusual step of not identifying the patients we spoke to because they fear how their friends and family, who don’t know they have the disease, will react.
Two and a half years ago, after years of struggling to keep a job or have a place to live for very long, Darrell became homeless. He slept on hard benches, concrete, the sand under the Boardwalk and occasionally in a shelter. Living on the street was hard on his aging body and his body hurt constantly.
Darrell, 56, hasn’t always lived on the edge of society. He graduated from Atlantic City High School. He graduated from a community college with a degree in culinary arts, with the goal of working in the city’s restaurants. “That didn’t mean I had a steady job,” he said. “It was very difficult on my part when I was looking for a job and I kept being turned down.”
In April 2010, while seeing a doctor at a clinic, he took an HIV test. The then-54-year-old was positive.
He fell into an emotional tailspin and considered suicide. Two and a half years later, he still has raw nerves and emotions over the diagnosis.
The day he learned he had HIV, a nurse worked to calm him down and explain what the disease meant. His nurse practitioner at the AtlantiCare infectious disease clinic put Darrell on medication.
Two important things happened during that time, he said. He learned how to manage the disease and attended group counseling sessions. He also became eligible for Social Security disability insurance, which helped bring some stability to his life. He now is sharing an apartment, but that arrangement likely will end soon, bringing a new round of uncertainty about where Darrell will sleep at night.
Darrell knows how he contracted the disease. In the fall of 2009, he had unprotected sex with another man. Darrell said he never used drugs or needles and he had always used condoms.
But the fear of stigma and humiliation is why Darrell keeps his HIV status private. He has told three people — his sister, his cousin and his best friend. The others in his large extended family, he fears, won’t understand.
“People are paranoid when you discuss something about HIV,” he said. “If I had told somebody, I would have been, like, discriminated against in a nasty kind of way.”
Atlantic City is a small town, but there is a high concentration of drug users who share needles and men who have sex with men, all of which are factors for why the rate of infection is so high, said Jean Haspel, a nurse practitioner and AIDS specialist with AtlantiCare. The disease rate is highest among African-Americans — one in 33 African-American men in Atlantic City has HIV and 54 percent of all HIV patients in Atlantic County are African-American, according to state Department of Health statistics.
Information campaigns launched at the peak of the AIDS crisis helped to significantly reduce the spread of the disease. The infection rate is still highest among gay men, and is growing again among younger gay men. Heterosexual men and women are now also increasingly part of the infection rate.
The infection rate also is growing among African-American and Latino women for multiple reasons, Haspel said. Women often don’t realize their partner may have shared drug needles or has had unprotected sex with another man, Haspel said. Also, African-American and Latino men often refuse to wear condoms during sex, she said.
But another reason the rate is high is that people don’t fear the disease like they did in the 1980s and 1990s because AIDS no longer is an automatic death sentence.
“HIV has fallen off the radar for many many people because people realize it is a chronic condition. They have become complacent,” said Haspel said. “They’re not protecting themselves. They may continue to use injected drugs, share needles, have unprotected sex. They don’t view themselves as a risk.”
Despite the advancement in treatments, which if taken correctly can make the virus nearly undetectable, there still is no cure for the virus.
“HIV is still a very serious disease,” said Keith Egan, president of the South Jersey AIDS Alliance, which has offices in Atlantic City, Wildwood, Millville and Bridgeton. “We are emphasizing that to no end that just because they can live longer doesn’t mean they live better.”
The cost of treating HIV and AIDS is astronomical. Medicines can cost about $3,000 a month, Haspel said. New Jersey has a program to pay for treatment for anyone who makes less than $57,000 per year, more if they have children.
According to the fiscal 2013 budget, the state allocated $4 million for the AIDS drug distribution program. Last year, more than 7,100 patients were enrolled in the program, which is funded through a federal grant.
Theresa is afraid to kiss any man she might want to become romantic with. She fears a stray cough by someone with a cold. At one time, she even feared a paper cut could pass the virus to someone else.
“I was real paranoid about being around others because I might hurt them or infect them,” she said. “But now I know they can kind of hurt me more than I can hurt them.”
The 51-year-old Atlantic City woman isn’t sure how she contracted HIV. She first points to the surgery she had in the 1980s, when she thinks she could have been given infected blood. But, she admits, she was promiscuous in her youth, never used condoms and sometimes took drugs with dirty needles.
One day, in 1997, Theresa learned she had HIV. The news made her feel numb, but she knew she had to tell her live-in boyfriend of three year immediately. His reaction? He packed up his things and left.
Theresa didn’t tell anyone, other than her doctors, about the illness for 10 more years. She worked hard to keep her life together, but the illness took its toll. The medication side effects and the emotional stress of the disease made it nearly impossible to keep a regular schedule or a steady job. She had to go on disability.
The bad days, when she can’t leave her apartment and doesn’t want to talk to anyone, are filled with self-anger for how she contracted the disease.
“Even though it could have been the operation, I know because of my lifestyle, that it’s probably my fault and I get mad at myself,” she said.
At one point in 2007, her medications were causing severe side effects and suddenly, she developed AIDS. That was when she told her stepmother about the illness. Rather than support her, Theresa said her stepmother told everyone and made disparaging remarks.
The years of treatment have been hard on her mind and body. At one point, she weighed just 100 pounds, but has since returned to a healthy weight. There are days of extreme exhaustion. Her mind wanders and she sometimes has trouble staying on task while talking.
“It’s like having two different lives. I have to live my life and then I have to live the life of what’s going on inside me,” she said. “But then there’s also that other thing. Should I touch this, should I go there, where’s this person been. You have to always be careful about germs and coughs.”
Federal and state laws mandate that pregnant women be tested for the HIV virus in order to ensure they don’t pass the virus on to their child. In some social circles when a couple becomes romantically involved, it is considered a sign of commitment to have an HIV test together.
Most people who get tested for HIV often suspect they may have been exposed to the virus, Haspel said. But others, who have strong risk factors for contracting the disease, refuse to get tested because they simply do not want to know.
This is a problem for those fighting to stop the spread.
The CDC estimates we don’t know who about 20 percent of the infected people are, Egan said. “What we’re doing now is a lot of outreaches. We’re trying to find those people who are at high risk and test them.”
Those who test negative are given prevention education. Those who are positive are put into treatment programs.
Egan said the critical reason for identifying those who have the illness is to get those people into treatment so that those people are a lower risk to the rest of the population. Patients who have low amounts of the virus in their system are less likely to spread the disease, he said.
The AIDS alliance has several types of prevention education programs, targeting the groups of people most at risk, The centers in Atlantic City and Millville offer free tests that have results in 20 minutes and the Atlantic City center also runs one of five legal needle exchanges in New Jersey.
Egan said that studies in other states with needle exchanges found that new HIV cases were reduced by up to 40 percent. “HIV transmission by injected drugs is one of the highest percentage rates of transmission in our area. That has an impact.”
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