Life With HIV and Diabetes Is a Mixed Bag of Struggles, Accomplishments, and Hope

Tim MurphyCONTRIBUTING EDITORMay 19, 2022

I was interviewed by the fabulous writer, Tim Murphy, for this article on HIV and diabetes. Please take a look, if you’re so inclined. As usual, my take on the issue is slightly different from the other interviewees. 😬

https://www.thebody.com/article/life-hiv-diabetes-struggles-accomplishments-hope?fbclid=IwAR3Jxzk_Kess_CDHY5Lt9wXHGXOfFTa3xrPOlg_J6v_A5yYXzwy_XXW9E4M

Back in the 1980s and 1990s, most people probably thought that HIV is one of the most dire and challenging conditions for an individual to live with. Until 1996, no HIV medications had yet been able to suppress the virus to the point of blocking its deadly progress; HIV was a near-certain eventual death sentence.

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Then came the HIV treatment revolution of 1996 and beyond. Suddenly, health experts, care providers, and advocates were declaring that HIV would become a chronic disease, just like diabetes. In fact, there are many chronic, manageable illnesses out there. But type 2 diabetes, perhaps because of its prevalence (more than 37 million Americans have it, compared with the roughly 1.2 million who have HIV), swiftly became the disease that HIV got compared with the most.

We wanted to better understand the realities of managing both HIV and diabetes, so we spoke with medical providers—as well as several people living with both HIV and diabetes—about their experiences. We learned that, for many, HIV has become far easier to manage than diabetes, although there were some exceptions—especially among those who have lived with HIV for a long time and have struggled at times to get to an undetectable HIV viral load, or with the side effects that have come from various HIV meds.

Mark Watkins, D.O., a longtime HIV care provider at Philadelphia’s landmark LGBTQ-serving Mazzoni Center, says that about 25% of his patients with HIV also have either diabetes or prediabetes. (Prediabetes means a higher-than-normal blood sugar level that is not high enough to be deemed diabetes but still should be addressed via diet or exercise.)

“I can treat someone with HIV with a once-daily pill or even a monthly or every-other-month shot in the glutes,” he says. “But diabetes [also] involves a change of habits. People have to learn to [make healthier food choices], cut down or quit alcohol, and exercise. They also often have to measure their blood sugar two to four times a day and be on multiple medications.”

Diabetes treatment has come a long way in the past few decades, says Janet Lo, M.D., an endocrinologist at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School who treats many patients living with both HIV and diabetes. In addition to metformin, there is now a class of drugs called GLP-1 receptor agonists that not only control type 2 diabetes but, relatedly, can induce weight loss and reduce cardiovascular disease risk.

Yet despite all that, says Lo, diabetes generally remains very difficult to manage. Even with meds, doing so “requires a complete change in lifestyle, which poses challenges for many [people].”

Even where COVID is concerned, diabetes is a big risk factor for severe or fatal COVID illness. Studies suggest that up to 40% of all COVID deaths in the U.S. have been among people with diabetes. In contrast, although a range of studies have found people with HIV to be at higher risk of dying from COVID, that was often observed in people older than 75 years and/or who had coexisting conditions, including high blood pressure and—you guessed it—diabetes. In other words, it was hard to determine if well-managed HIV as a sole factor significantly raised the risk of severe illness or death from COVID.

The Challenges of Living With Both HIV and Diabetes

TheBody put out a call over various Facebook group pages asking people with both HIV and diabetes to share their experiences living with both conditions.

“Diabetes is [extremely] challenging,” says Diane Miller, 61, of Albuquerque, New Mexico, who was diagnosed with HIV in 1995 and type 2 diabetes in 1999. “[I have] to check my blood sugar four times a day, [take] insulin before every meal, [take] the long-acting insulin at bedtime, [check my blood sugar in case] I give myself too much [insulin] and my blood sugar [gets] low, and always have a carb at meals. [I have] bruises on my stomach from insulin injections, risk of heart and kidney problems, numb legs when I’m walking or standing, neuropathy in my feet—and I have to exercise—and now a little nausea in the morning after starting a new diabetes drug, Trulicity [dulaglutide].”

On the bright side, she says, she has lost five pounds since starting on Trulicity.

In San Diego, Michael Donovan, 61, who was diagnosed with HIV in 1990 and diabetes around 2000, says, “Diabetes is far and away more complicated [for me] to deal with [right now]. HIV was a challenge before protease inhibitors, when I was on full disability and couldn’t tolerate food, so I was ‘eating’ intravenously. But once I started the protease inhibitor in 1996, I returned to work within months and stayed until I retired in 2018. HIV has just been a matter of blood tests and an occasional change in meds—not much of an issue.”

Diabetes, on the other hand, “has been a constant battle,” he says. “I’ve been on a long line of meds over the years. Sometimes my [blood] sugar level is fine, and then for no apparent reason it suddenly goes crazy. This leads to a round of medication changes and occasional insulin use in addition to the constant monitoring of diet and exercise. There are daily needle sticks to test [blood] sugar levels and a meter that sends [the readings] directly to my doctor. So it’s far more intrusive.”

For William Carter in Philadelphia, 57, who works part-time recruiting other people with HIV for studies at the University of Pennsylvania’s mental health and HIV division, once his HIV was diagnosed in 1997 and he started treatment, it wasn’t that big of a deal.

Conversely, complications from diabetes led to multiple operations to try to save his foot before it was finally amputated. Seven years ago, he had gastric bypass surgery—which, he says, plunged his weight from 400 pounds to 152 and put his diabetes into remission. Research shows that many people with diabetes have this outcome after weight-reduction surgery.

Before that, he says, “living with diabetes’ complications was physically, emotionally, and mentally depressing.” Whereas “with HIV, once I learned to swallow my pills, I was OK.”

He is echoed by Philadelphia’s Andrena Ingram, 67, a retired Lutheran pastor diagnosed with HIV in 1988 and with type 2 diabetes around 2000. “Diabetes has given me more complications than HIV,” she says. “There’s the constant testing, sticking myself, and worrying about what to eat,” she laments. She’s gotten good, she says, at mainly eating salads with things like corn and chicken—and occasionally, she’ll treat herself to ice cream, pizza, or half a Snickers bar. “It’s better to give in to the cravings a little bit than to avoid them completely and then binge,” she says.

And she makes herself walk around the block three times a week or do some leg lifts in bed, even though she doesn’t enjoy it. “The word exercise bothers me,” she laughs.

In New York City, Bruce Ward, 64, who was diagnosed with HIV in 1986 and with diabetes around 2010, believes that his diabetes and all his other health challenges have sprung from his HIV and/or his HIV meds—especially older, outdated therapies that were indeed found to increase risk for diabetes. As for an HIV-diabetes link, people with HIV do have higher rates of type 2 diabetes than the general population, but that’s likely because of higher rates of diabetes risk factors like obesity and older age; it’s unclear whether chronic low-level inflammation caused by HIV contributes to diabetes.

Ward says that his HIV has been harder to manage than his diabetes—in part because he’s had HIV since before medication became effective and easy.

“Managing my health with HIV has been a full-time job over three decades,” he says. “After years of swallowing handfuls of HIV pills twice a day, plus giving myself other HIV-related shots and various remedies, giving myself a tiny pinprick of an insulin shot once a night is not that much of a challenge.”

Changes to Diet and Exercise Often Demand Special Help

Of course, eating a healthy diet low in sugar and empty carbs and exercising regularly is good for everyone, with or without HIV and diabetes. But for people with diabetes, it’s a must. “You simply can’t give someone diabetes medication [and] give them free will to eat whatever they want,” says Watkins.

And that’s where things get tricky; it’s not easy for people to change habits built over a lifetime. That’s why Watkins advises baby steps. “Start by getting rid of soda [and sugary beverages],” he says. “That’s one of the biggest offenders. Then, if you eat Frosted Flakes for breakfast, switch to Corn Flakes or oatmeal.” With the latter, he says, “You can make a big batch on weekends so you don’t have to make it from scratch every morning.”

As for lunch, he says, “take something [from home] with you instead of buying it, when [available] choices [are more likely to be unhealthy]. Then ask what you can do to increase your daily physical activity. Take a walk? Hit the gym? Take the stairs instead of the elevator at work?”

If you work on the 12th floor, he says, even getting off the elevator on the 10th and walking two flights can help.

Lo says that nutrition counseling can greatly help people with diabetes revise their diet, if they can access it. She points out that for patients experiencing food insecurity, controlling diabetes can be especially difficult due to challenges accessing nutritious foods. That’s why she and other researchers partnered with the nonprofit organization Community Servings to better understand the benefits of providing medically tailored meals and nutrition counseling to such patients.

She urges people to ask their primary care providers or local HIV/AIDS service organizations if they can connect them to free nutrition counseling—or, for that matter, to free fitness classes or training.

Ward, for one, credits diabetes with making him improve his diet and exercise regimen. “In the last two months,” he says, “because of a new trainer I’m working with at my gym, I’ve taken the most active approach to diet and exercise in my entire life. And it’s working! I’ve lost body fat, and my blood sugar and blood pressure, for which I also take a daily pill, are completely normal. I’ve been giving myself less insulin.”

He adds, “I’d like to think that I could wean myself off it eventually. We’ll see!”