Willnette Cunningham (Photo by Dominic Hernandez)
Basketball great Earvin “Magic” Johnson announced in November 1991 that he was HIV positive and was quitting the sport. It was a moment that shocked friends and fans of the charismatic NBA player, and it would change the life of a Richmond woman who had never met him.
HIV and AIDS at the time were thought of mostly as a disease of gay, white men, drug addicts who shot up, or people who had received tainted blood in a transfusion. Johnson’s announcement showed that anyone could get HIV.
Willnette Cunningham, a mother and grandmother who will be 69 in February, heard Johnson’s announcement, and it struck something inside her. She had been in a relationship with a man for 11 years, a former drug addict who would at times come in at all hours or not at all. She was 41 and about to embark on another relationship with a new guy, and before things became too serious, she wanted to be tested for HIV.
The only place to get tested was the Medical College of Virginia, now VCU Health.
The first doctor she talked to balked at her request: It was unnecessary, she was told. A straight woman who did not inject illicit drugs was not at risk for the disease.
But she insisted.
Her test came back positive.
“I thought I was prepared to hear that,” Cunningham says, but she wasn’t — who would be? “I felt like my life was going to be ending soon.”
She later learned that her former love had been back on drugs and sharing needles.
Cunningham began treatment in January 1992.
Three months later, another very public figure announced that he, too, was HIV positive: Arthur Ashe.
The tennis great believed he had been infected through a blood transfusion in 1983 during cardiac-bypass surgery. He learned he was HIV positive in 1988 after brain surgery to determine why he had sudden paralysis in one arm. A biopsy found toxoplasmosis, a parasitic infection often associated with untreated HIV and AIDS.
Ashe kept his diagnosis private until April 1992, when he faced imminent public disclosure by the newspaper USA Today, which was ready to report that the infection had developed into full-blown AIDS. An old friend, sportswriter Doug Smith, met Ashe in person to confirm his diagnosis. Ashe died of complications of AIDS on Feb. 6, 1993.
Dealing With a Death Sentence
The early days of the AIDS epidemic in the early to mid-1980s were days of hardship and terror, across the nation and in Richmond, too. It was a time when someone who was freshly diagnosed knew they had received a death sentence, says Bill Harrison, president and executive director of Diversity Richmond. Young gay men who had been diagnosed often faced a double trauma of going home and telling their parents that they were gay and that they were dying.
A support service sprang up, as the Fan Free Clinic (now Health Brigade) created the Richmond AIDS Information Network, or RAIN. Harrison signed on as public information officer. It was beyond work; it was love, with care teams helping those in need with everyday chores such as grocery shopping or simply spending time with someone.
“We formed a family for them,” he says.
With family bonds came family duties, including arranging burials. Harrison says the funerals were often akin to open-mic events, where people would share feelings before releasing balloons.
Harrison was fatalistic, assuming that he, too, had received the death sentence. After all, death was all around: Half a dozen people he knew had the disease, and at a party you’d see people with the wasting syndrome, the weight loss, and you just knew.
Like Cunningham, he got tested. Three weeks later, he returned for the results.
He was HIV negative.
“I could not believe it,” he says. He picked up the nurse who had told him and started to dance with her.
Cunningham expected the worst in terms of acceptance by her loved ones, but she was surprised.
After receiving her diagnosis, she first told her brother and her two children. “They’ve been there right by my side ever since,” she says. Cunningham then disclosed her illness to only three of her U.S. Postal Service co-workers. She thought she would be fired if more people found out.
She worked there until her retirement, she says, and friends with whom she shared her story never treated her any differently.
And then she became involved in a series of quarterly retreats for people with HIV and AIDS. She found friendship and hope. “I went to my first retreat and found there were a lot of people who were living with the disease,” she says.
Medical Shock and Awe
The years just after Ashe’s death, the mid-1990s, were transformative in treating the disease, says Daniel Nixon, director of the VCU HIV/AIDS Center and medical director of the VCU HIV Clinic. The clinic treats 2,400 people with HIV and is the largest facility of its kind in Virginia.
Refinements in medication proved a godsend, Nixon says. The first drugs used in treating people with HIV could not fully suppress replication of the virus and came with horrific side effects. The next generation of drugs stopped the virus from replicating and kept the immune system from collapsing.
The early drugs also came with a lot of toxicity. “They were all we had, but they usually did not halt the inevitable progression to AIDS and all the awful, opportunistic infections that came with it,” Nixon says.
The development of HIV protease inhibitors, which came on the market in 1996, and another class, the non-nucleoside inhibitors, were prescribed in a cocktail of sorts with some of the older drugs, and that proved effective. It brought viral loads to basically undetectable levels, and while people were not cured, the virus was suppressed, which allowed the immune system to regenerate itself.
“That was a game changer,” Nixon says.
For the next decade, it was effective, but with side effects that could be almost intolerable, says Nixon. But people were willing to stay on their medications because it was the only game in town.
Improvements since that time have made medications even more effective and side effects less onerous. Nixon cites Atripla, a mix of three powerful drugs with few side effects that could be taken once daily, as the start of the modern era when it came on the market in 2006.
“No doubt science will one day come up with a vaccine, or even a way to reverse the effects of AIDS itself in the human body. But that will be a cure for other people, too late for me. Meanwhile, I keep sailing on in this middle passage. I am sailing into the wind and dark. But I am doing my best to keep my boat steady and my sails full.” —Arthur Ashe, from his autobiography “Days of Grace”
Cunningham now tests out with undetectable levels of the virus in her bloodstream, but it’s been a long, intermittent battle with the disease as it has toyed with her immune system. She dealt with shingles when she was in her mid-40s, has had repeated urinary tract infections and came down with every little sickness that her grandbaby had.
The man she began a relationship with in 1991 stayed with her until his death in 1997. Cunningham was left to run a household solely on her own income. The following year, it came down to a choice of food or her medications.
Food won out.
She was in denial over her health. Though she was eating, she was getting weaker and losing weight, until a fall sent her to the emergency room. Her T-cell count was 6, an abysmally low level of the lymphocytes that are crucial in the body’s immune response. Cunningham had developed full-blown AIDS.
She was out of the hospital in two weeks and back on her meds. By March 1999, her virus levels were again undetectable. She’s been thriving ever since. Her current medications make a great difference. Side effects when she began her treatment regimen in the 1990s were abysmal, but now she just has to deal with occasional insomnia.
Cunningham had another medical crisis to face last year, a bout with breast cancer. Her T-cell levels again trended downward as she underwent radiation therapy, but they have since bounced back up, she says. Doctors believe they got the cancer.
“I’m still here,” she says.
The current generation of medications is incredibly effective: About 85 percent of patients show undetectable viral loads, with most of the remainder not taking medications properly, Nixon says. Taken properly, the meds can be effective indefinitely. The drugs have transformed HIV into a disease that can be managed in some respects as you manage high blood pressure.
“You take your pill, you don’t get sick,” Nixon says. “You don’t have to die from HIV, and that’s huge.”
Several vaccines against the virus are in testing, as are trials for HIV cures. That is a difficult undertaking, since HIV hides in DNA, unlike any other virus. It’s akin to seeking a cure for cancer, says Nixon.
“We are a ways away, but we are getting closer,” he says.
The fear of HIV has been allayed as the treatments improved, which is good, but fear played a part in people protecting themselves when having sex. As HIV has been tamed, people have become less cautious, as evidenced by the spike in syphilis and gonorrhea from 2014 to 2017.
“Our message about having safe sex is not going fully heeded,” Nixon says.
Sources: Centers for Disease Control and Prevention; Virginia Department of Health HIV Epidemiologic Profile (2016); National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention County Health Rankings (2018)
Teachable Moments
Celebrities rarely make news now, in terms of announcing their HIV status. Medications have meant HIV no longer dooms people to death, and there are also simply fewer reporters in newsrooms now to pursue stories. Harrison says it’s also because the face of AIDS and HIV has changed, from the disease being perceived as one predominately occurring in gay, white males to an illness that is more prevalent in people of color, such as Cunningham.
“It just doesn’t get the attention,” he says, “and I think race has something to do with it.”
In 2015, about 62 percent of Virginia adolescents and teens diagnosed with HIV were African-American. About 23 percent of state residents with diagnosed HIV were white, and 11 percent were Hispanic, according to the National Centers for Disease Control and Prevention.
But the disease is still present, as is ignorance about it. Harrison, like Cunningham and her work with groups and retreats, has helped to educate the public.
The announcements by Johnson and Ashe galvanized the social dialogue. “Ashe had brought the disease to the public and gave us permission to talk about it,” Harrison says. “He and Johnson opened the door for people to talk.”
