Chris Camp recalls the early days of the HIV/AIDS epidemic, when being diagnosed as HIV positive was considered a virtual death sentence. Doctors had no medications that could really help. People with the disease often did not survive more than a year or two. Camp, now 63, says he personally lost more than 500 friends. Among them: his first husband, who died in his arms in 1992 at age 28, due to complications from AIDS.
“I never expected to live as long as I have,” said Camp, who has been HIV positive since 1982 and has been an activist and advocate in the HIV/AIDS community since 1983. But he’s now enjoying retirement in Baltimore, Maryland, where he volunteers his services as a community advocate and trains graduate students in patient-centered counseling at a local medical school, thanks mainly to powerful antiretroviral medications that have become available over time.
The news has not been all sunny, however—not for Camp, not for the 1.1 million people in the United States living with HIV. While no longer a death sentence, having HIV these days almost certainly means living with another chronic, though largely manageable, condition. Camp, for example, deals with a host of illnesses—Parkinson’s disease, liver disease, kidney disease, diabetes, and transient ischemia attacks (so-called “mini-strokes”). He has also survived a heart attack.
He is not alone: Nearly half of HIV survivors over 50 too often develop one or more chronic conditions not directly associated with HIV itself—cardiovascular disease, lung diseases such as pulmonary hypertension and COPD, anemias and other blood-related disorders, sleep disorders, cognitive dysfunction, osteoporosis, and certain cancers. While common in older people generally, these conditions tend to show up at higher rates in people with HIV.
A search for clues
That is why chronic diseases in HIV survivors are now the focus of a key study being stewarded by the NHLBI in collaboration with the Office of AIDS Research (OAR) and 14 other institutes at the NIH. Called the Multicenter AIDS Cohort Study/Women’s Interagency HIV Study Combined Cohort Study, or MACS/WIHS-CCS, it is one of the nation’s largest and most detailed studies of HIV survivors and is composed of predominately middle-aged and older adults. It is essentially a marriage of the MACS study, which started in 1984 to help slow the epidemic and has enrolled more than 7,300 gay and bisexual men living with HIV and at-risk for HIV; and the WIHS study, which started a decade later and has enrolled nearly 5,000 women living with HIV and at-risk for HIV. The two studies united on January 1, 2019.
“The MACS/WIHS Combined Cohort Study will try to identify biomarkers and risk factors that are associated with chronic diseases among people living with HIV,” said Sean Altekruse, Ph.D., the NHLBI Program Officer managing the study. “Findings from the project can be used to develop more effective interventions and treatment.” The combined study, expected to last seven years, will continue using information from participants in the earlier studies but also will enroll an additional 2,500 men and women, including people without HIV.
In addition to addressing issues around chronic conditions, it will explore the impact of race and gender differences, with a special focus on African-American and Hispanic men and women. These are groups underrepresented in previous studies and for whom rates for the disease have actually increased. The study will also point a fresh lens on people in the U.S.’s southern region, now the new epicenter of the HIV epidemic.
According to Phyllis Tien, M.D., a researcher at the University of California-San Francisco and Co-Chair of the MACS/WIHS-CCS Steering Committee, this is the logical next step in studying a disease that has evolved so dramatically in the last 40 years. “In the United States, AIDS is a rarer diagnosis these days,” she said. “With early diagnosis and timely antiretroviral therapy, people with HIV can live close to a normal lifespan without detectable HIV virus in their blood.”
“The big questions now,” said Todd Brown, M.D., Ph.D., a study leader for MACS/WIHS-CCS and a professor at Johns Hopkins University in Baltimore, “are around why people with HIV experience such high rates of chronic diseases.” According to researchers, people living with HIV have an increased risk of cardiovascular disease and nearly twice the risk of heart attack compared to those without HIV. They also face a two- to ten-times higher risk of developing blood clots. Older people with HIV experience high rates of chronic lung diseases and sleep disorders, too. And while the benefits of anti-HIV medications far outweigh the risk of not taking them, they may lead to another set of complications, including diabetes, accelerated vascular disease, kidney dysfunction, and bone loss.
Living for her son
Marta Santiago, 67, of Chicago, Illinois, is just beginning to feel some of that fallout. When she was younger, Santiago said, she lived a lifestyle that involved unprotected sex and sharing needles through drug use. In 1989, she tested positive for HIV and a month later learned that her then 8-year-old son tested positive, a result of in utero exposure to the virus.
“I thought to myself that this was a new chapter into the unknown,” she said. “My concern was for my son and his future. At the same time, I didn’t know what to do.” A few years later, a Chicago-based researcher from the WIHS program asked her to join the study. She enrolled. “WIHS gave me a future,” said Santiago, who is active as an educator in the HIV/AIDS community. “I joined for the sake of my son and his future.”
After her diagnosis, Santiago stopped using drugs and alcohol. But 30 years later she had surgery to replace deteriorated spinal discs and developed problems such as chest pain and acid reflux. She recently underwent tests for sleep apnea.
Her son is now age 38. He, too, is using antiretrovirals to keep his virus in check—but as the father of two healthy kids, a girl and a boy, who do not have the virus, his future is looking bright, Santiago said cheerfully. She plans to be part of the combined MACS/WIHS-CCS program because it keeps her going knowing she’s helping future generations.
Studying from every angle
For sure, even as MACS/WIHS researchers expand their focus—in part by including more Hispanic women like Santiago—other scientists are continuing to work on developing effective vaccines against HIV and, ultimately, on finding a cure. These efforts are part of a presidential initiative, “Ending the HIV Epidemic: A Plan for America," which aims to end the HIV epidemic in the United States within 10 years. Until then, MACS/WIHS researchers are working to find ways to make life better for those living with HIV—and that includes studying people without HIV.
Martha Williams, 65, a seamstress living in Birmingham, Alabama, is among others in that HIV-negative cohort. They serve an important role, Altekruse said, by allowing researchers to identify biological factors that might shed light on why some high-risk people get the virus and others do not. Williams said she doesn’t even try to explain it with science. “The only reason I don’t have HIV is God’s grace,” she said.
For years, Williams said she fed a crack cocaine addiction by having unprotected sex with multiple partners in exchange for drugs. “I realized I had been playing Russian Roulette with my life,” Williams said. “I was one of the people you would see and say. ‘Uh, what’s wrong with her?’ I was a mess.”
More than 20 years ago the mother of four got clean, but in 1996 while she was still in treatment she got tested for HIV. She was so shocked by that first negative result, she said, that she kept getting tested for years. In 2014, after Williams joined the WIHS program, she underwent the most thorough blood test that she had ever had and again got the same result: negative. She marvels to this day.
Now, Williams is literally and figuratively sewing her life back together. She makes clothes for everybody from prom goers to celebrity musicians. And while she is overweight and has high blood pressure, she said, she’s thankful that those conditions are not due to complications of HIV.
Participating in future MACS/WIHS-CCS studies not only will give her access to the health care she needs, she said; it also may give researchers insights into what may be driving the uptick in HIV cases in the South, and especially among African-American women like her.
The MACS/WIHS-CCS program will officially begin recruiting participants in January 2020 at sites across a broad cross-section of the United States: Atlanta, Georgia; Baltimore, Maryland; New York City, New York (Brooklyn and the Bronx); Chapel Hill, North Carolina; Chicago, Illinois; Washington, D.C.; Los Angeles, California; Miami, Florida; Pittsburgh, Pennsylvania; Columbus, Ohio; San Francisco, California; Birmingham, Alabama; and Jackson, Mississippi.
Gerald Sharp, DrPH, a Project Scientist with NIAID, sees this as an exciting time for MACS/WIHS-CCS. “Investigators across these 14 research sites have formed a great team,” Sharp said. And people like Camp, Santiago, and Williams, he added, can be proud that their contributions will address critical HIV-related questions, and ultimately help make life better for the many who still suffer.