Living with HIV and AIDS
“I'VE LOST A LOT OF CLOSE FRIENDS,” SAID DERALD Robertson, recalling the early 1990s in Detroit. They got HIV and started to die of AIDS before he found out he was also HIV positive, not long after breaking up with his boyfriend at the time. He was 17 and doctors didn’t expect him to live past 21.
Seventeen years later, he has beaten the odds and lives in Coconut Creek with his husband, Lorenzo Robertson. Both are active in providing support for people with HIV and AIDS in South Florida, which has some of the highest rates of new infections in the country. The consequences of contracting the virus have changed dramatically since the deadliest days of the epidemic in the ‘80s and ‘90s, but attitudes and stigma surrounding HIV are for some still frozen in the past.
It is no longer a death sentence, and patients can avoid the end result of full-blown AIDS. With better medication, HIV is an increasingly manageable chronic illness — though one that is life altering medically and socially, close to a normal life span if not always a normal life. And there is still not a cure for HIV. As people live longer with the virus it can exacerbate many other health problems such as a heart condition or diabetes.
“You push toward a bunch of other illnesses at an earlier age than you normally get them,” said Dr. Bob Schwartz, a Fort Myers physician who worked with HIV/AIDS patients for more than 30 years before retiring in 2012.
There also remains a persistent and complicated stigma surrounding the virus that is tied up with thorny issues all their own such as sex, sexual preference, race, gender and religion. Care providers and researchers believe these are key factors in what they say is a lack of prevention and education, and in driving an increase in new HIV cases in the state.
“Southwest Florida, though care is progressive, I would say the community is not as progressive,” said Amalia Amy Zamot, prevention director at McGregor Clinic in Fort Myers, which serves about 1,200 HIV/ AIDS patients. “Our clients face rejection, stigma, ignorance… especially if they are gay or bisexual.”
Dr. Schwartz asked “Is there a stigma? You bet your ass. But there’s a bigger stigma with being gay. And there’s another stigma with being caught with a venereal disease.”
Telling close friends and family members can be one of the most difficult parts for people who have been diagnosed.
Annette, a Fort Myers resident who tested positive in 2008, said even close family members, such as a sister, didn’t want her to be around their kids at first.
“She told me she loved me but she appreciated it if I didn’t come to her house anymore,” Annette said.
That changed over time, along with Annette’s initial reaction, considering suicide and losing herself in drugs and alcohol. Now because of antiretroviral medication she takes, one pill each day in the evening, the virus is undetectable in her system. Like others living with HIV, the regimen requires strict adherence and health monitoring, including for most patients visits to the doctor at least four times a year.
It’s also a financial burden for many. Patients get help paying for treatment through Medicaid, Medicare and the federal Ryan White Program funded at about $2.2 billion per year, if they meet income requirements. But co-pays and taking time off work can end up being costly.
Now family members often give Annette a hug and a kiss when they gather, though not everyone.
“I will always have those issues, have some people in the family give me that certain look, walk around me,” she said.
Dealing with HIV at work also poses difficulties, said Scott George, director of publicity for Sarasotabased Community AIDS Network, a nonprofit that runs 23 clinics throughout Florida.
That includes explaining time off taken for medical check-ups or sick leave, since the virus makes patients more susceptible to other illnesses.
“It just makes for a difficult relationship when you’re living with this thing in your head,” Mr. George said, adding that it exacerbates depression. “I think that’s one of those things that people don’t realize is that there is a constant awareness of you being HIV positive and the possibility of getting full-blown AIDS and getting sick and so people with HIV live with that in their heads.”
At the same time, many people living with HIV otherwise appear fit and healthy.
“You can’t really look at a person and tell whether they’re positive or not like you could back in the early ‘80s or ‘90s,” Mr. Robertson said. “So the medication has come a long way, but unfortunately once that stigma is there it’s very hard to break it. I think it takes generations and generations to pass for people to start coming around and for people to start viewing it differently.”
For many, having HIV is a “huge secret,” Mr. George said. “That’s still where HIV is, 30, 35 years later…
“It’s not like cancer where everybody surrounds you and wants to help you.”
The first cases of what would become known as part of the HIV/AIDS epidemic were recognized in the United States in 1981.
Valerie Wojciechowicz, who has lived with HIV for 30 years, reported in the Winter 2016 newsletter for the Community AIDS Network that because of her condition she has been “fired from a job, turned away from medical treatment and I’ve been told ‘AIDS is God’s way of weeding out the population.’”
An estimated 1.2 million people in the U.S. and 126,000 people in Florida are living with an HIV infection.
Almost 13 percent of them don’t know they’re infected, the Centers for Disease Control estimates, and 61 percent fail to keep up with HIV care that can reduce the viral load and decrease the risk of infection.
The actual number is not quite that high, said Dr. Robert L. Cook, professor of epidemiology and medicine at the University of Florida. Better HIV surveillance methods, such as state-to-state information sharing, show it may be inflated.
“We’re actually discovering that not as many people are out of care than the original estimates,” he said.
While people infected with HIV usually do not face premature death if they stay on antiretroviral medication and follow treatment guidelines, many still fail to get treatment for a variety of reasons, including feeling ashamed about having the virus and denial. In 2014, 874 people died from HIV or AIDS in Florida.
“There are a lot of people who have been diagnosed and are not in care and there are a range of reasons, but stigma continues to be a big one, and denial,” Dr. Cook said.
While the virus affects all races, genders and socioeconomic groups, minority communities have been hit hardest.
The CDC projected in February that about half of gay or bisexual black men and a quarter of gay or bisexual Latino men will get HIV during their lifetime if current diagnosis rates stay the same. The lifetime risk of HIV diagnosis in the U.S. is 1 in 99.
Blacks made up only 14 percent of Florida’s population in 2014, but 41 percent of adult HIV infection cases, a figure similar to the U.S. as a whole. Young African American men who have sex with men are among the most at risk groups for contracting HIV.
Lorenzo Robertson, who helps provide education and outreach to gay and bisexual black men through West Palm Beach-based Ujima Men’s Collective, has found that starting conversations about HIV can be difficult. That’s for a number of reasons including religion in African American communities, he said, and the idea that HIV is “God’s punishment for your aberrant behavior.”
“We’re looking at HIV, especially in black communities, as it was in 1985,” he said. “It’s still the same mindset.”
Rates are also high among Hispanics, a group that accounted for 26 percent of new cases in 2014 while making up 23 percent of the population.
“Many of our clients come from countries where safer sex and HIV education are non-existent,” wrote Stephen J. Fallon, executive director of Miami-based Latinos Salud, which provides testing and treatment, in an email. “If they are gay/bisexual men, they may also carry internalized homophobia, and related to that, a fatalism about inevitable HIV infection.”
At the same time, from 2005 to 2014, the number of HIV cases decreased 9 percent among blacks in Florida, while there were small increases for whites and Hispanics during the same time.
Mr. George attributed that at least in part to black churches and communities in the Sarasota area being open to discussions about HIV.
“I must say that a lot of the African American churches in our area are very open to helping their young and often ask us to come when they have a big event or something with our testing van,” he said.
There are more than 44,000 new HIV infections diagnosed in the U.S. per year, with some of the highest rates in the country in South Florida. Miami-Dade has the highest number of new infections in the state by a large margin, followed by Broward, Orange and Palm Beach counties. Lee and Collier counties have higher rates than the state as a whole while Charlotte County’s rates are lower.
“There clearly are many more new infections emerging in Florida than there could be because it is a preventable condition,” said Dr. Cook.
That includes a daily pill that has proven effective at preventing HIV called PrEP or Pre-Exposure Prophylaxis. Condoms are still considered the best way for most sexually active people to prevent HIV and a range of other STDs.
Prevention should also include providing better instruction in public schools, said Patti Kelly, a case manager at Aids Healthcare Foundation-Island Coast Aids Network in Fort Myers and mother of three teenagers. Florida’s official “abstinence only until marriage” sex education policy means most educators only teach abstinence. People age 13 to 24 accounted for about 1 in 5 HIV diagnosis in the U.S. in 2014.
“I think the lack of education in the school system doesn’t help,” she said.
Ms. Zamot with McGregor Clinic in Fort Myers said they may not be as knowledgeable about HIV and AIDS because they didn’t live through the early days of the epidemic, and have a youthful sense of indestructability.
Sam, a 55-year-old Fort Myers man who has lived with an HIV diagnosis since 1989 and mentors youth who have the virus, said education about it should start at home. Some people in their teens or 20s with HIV have circles of friends they don’t trust enough to tell, so they end up staying away from treatment altogether.
“It’s like the ostrich syndrome,” he said. “Instead of talking to somebody about it, they hide their head.”
The rates of new HIV infections are higher in Florida, especially in urban areas and in some South Florida communities, than the United States as a whole. Researchers point to systemic social factors such as poverty, employment, education, access to health care, and stigma, as well as Florida’s historically high HIV rates and budget cuts within its public health system.
It is hard to know which is the greatest factor, wrote Dr. Robert L. Cook, professor of epidemiology and medicine at the University of Florida, in an email.
“Florida in general has not done a great job with pushing HIV prevention in the public health system,” he wrote, “although they are much more aggressive on HIV prevention this year.”
The virus is contracted most by men having sex with men, followed by heterosexual sex and injection drug use. Communities that have long had higher HIV rates often continue to have them.
“Florida has historically been among the top states in terms of HIV cases, thus the community viral load is greater than in other areas of the country,” wrote Rik Pavlescak, Ph.D., chief operating officer of Found- Care. “When you look at Florida overall, you’ll see a much larger portion of the cases in South Florida versus the rest of the state. This area tends to be more urban, and may attract some populations that are more greatly impacted by the social determinants of health.” ¦
Where to get an HIV screening
Federal guidelines recommend routine HIV screening for people ages 15 to 65. Florida Department of Health officials recommend getting tested once a year if you’re sexually active, during a routine physical or at local clinics. Tests are simple and usually take 20 to 30 minutes to get a result. Many clinics have free testing days for HIV and other sexually transmitted diseases. Call for more information.
Lee County Health Department
Free walk-in HIV testing is available at two locations.
At 83 Pondella Road, North Fort Myers:
Monday through Wednesday 7:45 a.m. to 10 a.m. or 1 p.m. to 2:30 p.m. On Friday from 12:45 p.m. to 2:30 p.m.
At 3920 Michigan Ave., Fort Myers:
Thursday 7:45 a.m. to 10 a.m. or 1 p.m. to 2:30 p.m.
Testing and HIV/AIDS primary care
3487 Broadway Avenue, Fort Myers
AHF-ICAN (AIDS Healthcare Foundation- Island Coast Aids Network)
Testing and other services for HIV/AIDS
2231 McGregor Blvd., Fort Myers
The human immunodeficiency virus can lead to the most serious stage of HIV infection, acquired immunodeficiency syndrome. The virus attacks the body’s immune system so that eventually it can’t fight off other infections and disease.
While there is no cure for HIV and the body can’t ever be rid of the virus completely, it can be controlled with antiretroviral therapy medication. Most people who stay on treatment can live long, quality lifespans. It also reduces the risk of transmission to others. If left untreated, however, people with AIDS usually live for about three years.
It is not easy to spread HIV. It is most often spread through unprotected anal or vaginal sex, as well as syringe use. HIV is not transmitted through casual contact such as using the same toilet, touching, drinking fountains or silverware. It is extremely rare for HIV to be transmitted by oral sex, blood transfusions or kissing. HIV cannot be spread through saliva, only through blood, semen and pre-seminal fluid, rectal fluids, vaginal fluids and breast milk.
More information: AIDS.gov
New HIV infection cases by county in 2014
>> Miami-Dade: 1,198
>> Broward: 694
>> Orange County: 382
>> Palm Beach: 320
>> Lee: 83
>> Collier: 33
>> Charlotte: 8
>> Florida: 24
>> United States: 16.5
* per 100,000 people as of 2014 Sources: Florida DOH, CDC, The Kaiser Family Foundation