HIV treatment (antiretroviral therapy) has changed the face of HIV/AIDS. Successful treatment now allows millions of infected people to keep the virus under control, even undetectable, and lead healthy lives.
But as with all medicines, it can have side effects. In some people, weight gain is one of them.
Recent studies show that 1 in 6 people who start taking HIV drugs gain at least 10% of their body weight in 1 to 2 years. Why this happens remains a mystery.
If you are underweight when diagnosed, the gain may be a welcome one and a milestone on the road to what is called a “return to health.”
But if you are normal weight or overweight, it can be a persistent problem and can lead to weight-related health problems. This could include diabetes and heart disease.
Race, sexual orientation, HIV and weight
HIV affects black/African American gay, bisexual, and other men who have sex with men more than any other group in the United States. Black/African American gay and bisexual men accounted for more than a quarter of the nearly 37,000 new infections in 2019.
Weight gain is more common in black people who are on treatment. Therefore, it could affect black gay men in greater numbers.
Reginald Austin and Eric (name changed to protect privacy) are two gay black men. They are among those who struggle with their weight due to HIV medications.
Eric, 48, was diagnosed 3 years ago. He started taking the combination HIV drug Biktarvy and noticed weight gain within 4 months.
“My weight fluctuates naturally, but I have never experienced such an amount of weight as I am currently experiencing. At first, I attributed the difficulty losing weight to my age and a slower metabolism.”
He gained 35 pounds overall but lost 15. It’s been a struggle to keep it off. Eric has gained and lost that same 15 pounds multiple times.
Eric says he’s had some success getting plenty of fiber and swapping one meal a day for a protein shake and vegetable powder mixed with small amounts of fresh fruit and ginger.
Biktarvy has made Eric’s viral load undetectable. “Other than having high blood pressure, he is considered healthy to me. He would be even healthier without the weight gain.”
The Reginald Austin Story
Austin was diagnosed at age 19. That was 15 years ago and his viral load is now undetectable. During his trip, Austin took several HIV medications and began to gain weight at least a year after starting therapy.
His family jokingly nicknamed him “Lurch” (from the addams family) before his weight gain because he was very tall and skinny. His weight skyrocketed from 174 pounds to 248. His father made a comment at one point, saying, “God, son, how big are you going to get?”
The drugs deposit fat in the lower abdomen and “it just doesn’t want to go away,” Austin says, adding that it was difficult to lose weight in that area.
Austin says that everyone he knows gains weight after starting medication. He works as a care linkage coordinator and case manager at Thrive SS, an Atlanta organization with a mission to support and work for health equity for black gay men.
She works with newly diagnosed people who are often very sick, thin, frail, and unhappy with their appearance. “I look at them and smile and say, ‘Honey, believe me, when you take the meds, it will stop.'” Austin says that, at first, people are excited because they are getting better on the drugs. But then often the weight gain does not stop.
Now 34, Austin takes the Dovato combination pill, which he calls “a breath of fresh air.” He now weighs 197 pounds, but he says it’s still hard to control his weight.
Austin says he was at risk of developing other health problems because of his weight, so he reviewed his habits. He’s back in the gym and credits his plant-based diet with helping him lose weight.
Austin says he’s in a “happy place” in his life right now, but not “at peace.” He worries that if he changes his medication, his weight might “spike up again.” He says, “I’m nervous about switching to (long-acting) injections. My first question is: ‘Will it cause weight gain?’”
healthy living with hiv
“It’s very important to be consistent with visits to medical providers, especially infectious disease doctors, because they generally have a better understanding of living with HIV and the secondary illnesses that can accompany HIV,” says Eric. “I would advise people to be hopeful that research is being done that will help promote longer and healthier lives.”
Talk to your health care providers if you are concerned about your weight. Your doctors may be able to come up with a new treatment plan that works best for you. They can also suggest ways to help you lose weight, including:
- A referral to a registered dietitian who can help you design healthy meal plans that you’ll enjoy and that can also help you lose weight.
- Ways to fit exercise into your daily routine and help you get started
In addition to weight loss, exercise has many other benefits. He:
- Helps your immune system work better
- Fight depression
- Build strength and stamina.
Don’t let weight gain or anything else, including cost, get in the way of your adherence to treatment. If you’re having trouble paying for HIV care, Austin has these suggestions:
- Go to your local health department for testing and referrals to local agencies that can link you to care.
- Ask your doctor’s office if you are eligible for coverage under the Ryan White HIV/AIDS program. It is a government program that helps people who are uninsured or cannot pay for care, including doctor visits, medicines, and support services like food services and counseling.
Create a support team
Eric says that having a strong group of friends makes all the difference in his life. “People need to surround themselves with people who hold them accountable for a healthy standard of living, as well as welcome the opportunity for crucial and vulnerable conversations to take place.”
He says: “I am part of a group of gentlemen who are also living with HIV. Knowing that they have lived with this condition for many more years than I have given me hope that I can live a great life that not only includes being healthy but also experiencing love.”