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Rob Quinn suspected something was wrong when he started to feel out of breath. He was in his mid-50s and in relatively good health. But he knew breathing problems could be a sign of heart disease, which his father had died from years earlier.

After a battery of tests showed all his numbers were normal, his doctor told Quinn he was fine. But Quinn, who had survived a heart attack 15 years earlier, pushed for more testing.

His insistence paid off. The new tests revealed he had cardiomyopathy, a condition in which the heart muscle gets larger or thickens.

At the time, Quinn was living in rural Massachusetts. After the diagnosis, he moved to Boston, where he hoped to find a cardiologist with experience treating HIV-positive patients, like himself, with heart disease.

“The journey has not been easy,” said Quinn of his struggles with health problems that have included AIDS, alcohol abuse, and Kaposi sarcoma, an AIDS-related cancer. The 58-year-old child development specialist said getting his health on track was often difficult because the doctors he saw didn’t have experience treating HIV-positive patients with heart disease.

“We’re kind of learning all together,” said Quinn.

Many older adults are at risk of developing heart disease or having a stroke. But for people with HIV, the risk is even higher. Recent studies have found that HIV-positive individuals have approximately a 50 percent to 100 percent increased risk of having a heart attack or stroke compared with HIV-negative individuals. Now, a new study suggests why.

The study published in November 2017 in the Journal of the American Heart Association compared the cardiovascular care received by HIV-positive and HIV-negative patients who were at high risk for developing heart disease or having a stroke. For the report, the researchers assessed whether physicians followed widely used prevention protocols.

The researchers found that the patients living with HIV were much less likely to have a doctor prescribe aspirin or cholesterol-lowering medications than were patients who were HIV-negative.

Although the study didn’t address why doctors were not following the guidelines, the investigators suggested that because some primary care doctors have only a limited amount of time to see a patient, they are likely to focus more on treating the HIV than following the prevention protocols.

Internist Dr. Joseph A. Ladapo, the lead author of the study, treats HIV-positive patients at the Ronald Reagan UCLA Medical Center. He said he’d had a sense that many of his patients weren’t getting the preventive care they needed to reduce their risk of a heart attack or stroke. The findings, he said, show “just how poor of a job we do as doctors in helping our patients reduce the risk of heart disease.”

Until the mid-1990s, most people with HIV died relatively quickly of an AIDS-related illness. But as treatments have improved, that’s changed. Today, it is not uncommon for doctors to have HIV-positive patients who are in their 50s and 60s, or even in their 80s. According to the Centers for Disease Control and Prevention, in 2015 (the most recent year for which statistics are available) there were more than 970,000 people in the U.S. living with HIV, and nearly half were over 50.

HIV and cardiovascular disease researchers have known since the early days of the AIDS epidemic that people living with HIV were at risk of developing heart disease or experiencing a stroke, said cardiologist Dr. Tomas G. Neilan, director of cardio-oncology at Massachusetts General Hospital in Boston. Yet he said physicians haven’t yet developed clear cardiovascular care protocols for HIV-positive patients.

Neilan, who is Quinn’s cardiologist, said the absence of guidelines is striking because cardiovascular disease in HIV-positive patients is probably not as strongly related to the virus as it is to a combination of factors, such as inflammation related to HIV, the antiretroviral therapies used to treat the virus, and the commonness of high blood pressure and other conditions that may lead to heart disease and stroke.

Ladapo’s study supports previous research findings. A 2012 study, for example, found that fewer than one in five HIV patients at risk for heart disease and stroke was told that taking a daily aspirin could reduce this risk.

Infectious disease specialist Dr. David N. Schwartz, chair of the division of infectious diseases in the Cook County Health & Hospitals System in Chicago, said that when treating patients with HIV, the initial concern is getting the virus under control. But in older patients, he said, attention must also be paid to high blood pressure, diabetes and other conditions that can increase their risk of heart disease and stroke. Schwartz said one of his biggest challenges is getting HIV-positive patients to address these other aspects of their health.

Robert L. Quinn (right) with siblings Michele Quinn and Roland E. Quinn Jr. (Photo by Jen Quinn)

Rob Quinn (right) with siblings Michele Quinn and Roland E. Quinn Jr. (Photo by Jen Quinn)

Quinn said his experience taught him he must be in control of his health care. He encourages others living with HIV to be assertive when dealing with their doctors, to ask questions, learn their family health history, listen to their bodies — and be vigilant about their risk for heart disease and stroke.

An advocate for health equity for people with HIV, Quinn said he often reminds younger people living with the virus that they are likely to not know for years if or how their HIV medications may increase their risk for cardiovascular diseases.

Quinn said he believes it is also important for doctors to get to know their patients and listen closely to what they are saying about their health. The doctor-patient relationship should be a partnership, he said.

Quinn said he would also like to see more studies on cardiovascular disease in people living with HIV.

“Sometimes I feel we’re a forgotten community for research,” he said. “It’s always about, like, the next generation. Heck with that. Let’s take care of this generation right now. I mean, we’re here, we’re still alive.”

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