Sharmain Mayes has vivid memories of the day St. Jude doctors and her aunt explained the impact that three letters — H, I and V — would have on her life. Her clinicians underscored the importance of taking her medications regularly and making frequent clinic visits; her aunt emphasized that her family’s unconditional love would prevail.
Still, the more Sharmain learned about the human immunodeficiency virus (HIV) she had acquired at birth, the more she grappled with resentment about the stigma that society attached to the virus. “I was encouraged to keep it a secret, because it would make my life extremely tough if people knew,” she says.
Sure enough, the teen was ostracized when she revealed her “secret” to trusted friends. She began taking her medications at times when her peers wouldn’t notice. Sharmain watched as the plates she had used at one meal were surreptitiously discarded. Her fellow college students brazenly whispered and stared upon discovering her status. Those were tough moments.
“People were unaware of HIV/AIDS and were scared of it,” she says. “My life was so negative, and I wanted so badly to see the opposite — the positive side of life.”
Sharmain escaped her reality through dance, music and inspirational novels that featured heroes, happy endings and healing. She also began competing in beauty pageants to boost her confidence.
Now living life on the positive side, Sharmain strives to inspire others who live with HIV/AIDS. Thanks to St. Jude research advances, she is celebrating 22 years of longevity against a disease that was once considered a death sentence.
“Growing up, I thought every city had a St. Jude,” Sharmain says. “How blessed am I to have been born in Memphis — in the epicenter of research for children with HIV/AIDS?”
The saga begins
The hospital’s roots in HIV/AIDS research began long before the U.S. reported its first case in 1981. In the early 1970s, a St. Jude pioneer had found a cure for the Pneumocystis carinii pneumonia that threatened the lives of immune-compromised leukemia patients.
Walter Hughes, MD, St. Jude emeritus faculty, screened more than 30 compounds before discovering the right drug combination to treat the deadly infection.
“We found several drugs that reduced the infection from 100 percent to 50 percent. That showed the drug had some activity, but we wanted to reduce that number to zero,” Hughes says. “So we kept going and finally got trimethoprim-sulfamethoxazole.”
The drug was 100 percent effective in treating and preventing Pneumocystis in laboratory models, as well as in patients with cancer. Later studies by Hughes showed the drug had the same effect in individuals with HIV/AIDS, for whom Pneumocystis was the most frequent cause of death. Today, trimethoprim-sulfamethoxazole is the drug of choice when treating pneumonia in the approximately 33 million people worldwide with HIV/AIDS.
Hughes and his team of St. Jude researchers later developed the drugs dapsone and atovaquone, also standard treatments for preventing Pneumocystis in patients with HIV/AIDS. Recent data show that about 4.5 million HIV/AIDS patients are receiving one of the St. Jude drugs to prevent Pneumocystis pneumonia, in addition to the individuals who receive those drugs for cancer, organ transplants and congenital immunodeficiency.
A different Total therapy
Shortly after St. Jude founder Danny Thomas’ 1987 declaration that HIV/AIDS was a catastrophic disease of children, the hospital established a pediatric HIV/AIDS clinical program. Hughes recruited Patricia Flynn, MD, to help develop it.
“From the beginning, Dr. Hughes had the incredible insight to look at how treatment modalities similar to the ‘Total therapies’ that were being used for leukemia interventions would likely be necessary to combat HIV infection,” says Flynn, director of Clinical Research in the hospital’s Department of Infectious Diseases.
St. Jude began treating hemophilia patients who developed HIV and later expanded the program to focus on infants born to HIV-infected mothers. In 1992, the hospital received a federal grant to establish St. Jude as a National Institutes of Health Pediatric AIDS Clinical Trials Unit. The funding allowed St. Jude to participate in the first national, landmark study to reduce the transmission of HIV from mother to infant.
“It was a tremendous advancement,” says Flynn, who holds the Arthur Ashe Chair in Pediatric AIDS Research at St. Jude. “We had a few drugs that could be used to treat HIV infection, but we had no idea whether or not those drugs were safe to give to pregnant women. Would they be able to tolerate their potential toxicity? If so, did the drugs have any chance at successfully preventing the transmission of infection?”
The results were astonishing. The ACTG-076 study showed that HIV transmission was reduced by two-thirds when the antiretroviral drug zidovudine, or AZT, was given to infected women during pregnancy and to babies shortly after birth.
Mother-to-child transmission rates continued to decline nationally, with St. Jude helping reduce the numbers locally. In the past nine years, fewer than 20 babies have been born with HIV in the Memphis area. In 2010, only one baby was born to an HIV-infected mother. That number dwindled to zero in 2011.
Current research at St. Jude continues to monitor the long-term effects of therapy in infants who were exposed to HIV and the drugs to treat and prevent HIV infection but who do not have the virus themselves.
A holistic approach
As prevention improved in infants, a spike in HIV infection rates among teens and young adults in the late 1990s led St. Jude to shift its focus and expand research and prevention programs targeting teens and adolescents. These included the Reaching for Excellence in Adolescent Care and Health (REACH) behavioral study and the Adolescent Trials Group, which is funded by the National Institutes of Health. Through the latter, St. Jude and a network of community partners provide HIV education and intervention programs that target general and high-risk populations, encourage testing and help to de-stigmatize HIV/AIDS.
“We’ve moved away from the old days when patients had to take handfuls of pills three times a day,” says Christine Sinnock, a longtime social worker in the St. Jude HIV/AIDS program. “Research has made it possible to treat the disease without the pill burden, with less frequency and minimal side effects. Yet, people are still dying of HIV because of the stigma and the secrecy.”
Sinnock says myths and ignorance about the disease continue to create barriers for patients trying to access care. Helping patients overcome their social struggles will continue to be just as critical to their survival as providing medications to prolong their lives.
“We have a holistic team of clinicians in our program to treat the whole person — not just the diagnosis,” Sinnock says. “Many of our patients are inner-city youth who come into treatment with a host of challenges, and we get an opportunity to try to turn things around for them.”
That’s where Sharmain steps in — frequently speaking to peer groups at St. Jude and in the community about how she overcame her past struggles and the burden of living with HIV/AIDS.
“From a negative situation came my positive outlook on life,” Sharmain says. “Who I am is not defined by my illness; it’s defined by my attitude. The people at St. Jude have shown me that I have options, and that I don’t have to sit in a corner and cry and think my life is over.
“My life is far from over.”
Reprinted from Promise Autumn 2012