Toronto General Hospital
Over the past five or 10 years, HIV medication regimens have become much simpler and managing HIV is now much easier. As people with HIV get older, many experience health problems other than HIV. People with HIV tend to develop some other illnesses sooner and at a higher rate than people without HIV.
One of the biggest challenges for people who are managing multiple conditions is taking many medications. The problems of polypharmacy have already been well established among seniors. These include the increased risk of drug interactions, side effects and hospitalization, as well as the increased challenges of medication adherence. HIV adds another layer of complexity to the already-difficult task of managing age-related conditions.
One of my biggest worries is “negative treatment bias”—a holdover from the early days of the AIDS epidemic. In those days, doctors were reluctant to treat an HIV-positive person’s other conditions because their life expectancy was so poor. You would think that because we’ve had effective therapies for more than 20 years now, that would no longer be an issue, but studies show that HIV-positive people are less likely than HIV-negative people to be treated for cancer and other treatable illnesses.
That negative treatment bias still exists for several reasons: lingering prejudice, doctors’ reluctance to prescribe new medications in addition to HIV drugs, and poor communication between specialists. But now we have a better understanding of how to safely prescribe multiple medications, so there’s no reason why a person with HIV shouldn’t be treated for other conditions as well.
Pharmacists have an important role to play for people managing multiple conditions. One key role is to identify potential drug interactions.
I always suggest that a person try to get all their prescriptions filled at one pharmacy because that becomes their touch point. The pharmacist can be the first line of defense. A pharmacist can help you manage medications by creating blister packs, arranging home deliveries or modifying dosing schedules so you only have to take pills a few times per day. A pharmacist can also help you figure out what kind of drug coverage you’re eligible for.
My advice is to keep an up-to-date list of everything you’re taking—prescription and over-the-counter medications, vitamins, supplements and recreational drugs—as well as your medication history. Bring that list to all of your doctors’ appointments, especially those with new specialists.
I also encourage people to be their own advocates. I try to educate patients about the possibility of drug interactions so they can be prepared if a doctor prescribes a drug that could interact with something else they’re taking.
Advocate for Aboriginal people and people living with HIV
When I was diagnosed with HIV in 1996, I didn’t feel sick at all. I may have contracted it 10 years earlier, when I was at the height of my drug career and street involvement. But when I was diagnosed, I felt healthy and I was in good shape—all buffed up—so at first it was hard to comprehend that I had HIV, even though my CD4 count was 28.
I didn’t know where to turn for help. There were support groups in Calgary, but at the time they weren’t very accepting of Aboriginal people. The first time I went to a support group, everyone else there was male, white and gay. As a straight Aboriginal man, I thought, “Gee, what have I gotten myself into?” But I decided I wanted to learn about HIV so I kept going. The other members taught me a lot.
Eventually, I started volunteering at HIV Community Link and I became a board member of the National Aboriginal Council on HIV/AIDS.
Over the years I developed other health problems. I was diagnosed with diabetes 20 years ago. In 2003 I nearly drowned, likely because of it. It was a hot day—July 1st. My wife and I had taken one of our grandsons swimming and I passed out and sank like a rock in the pool, probably because of low blood sugar. Some guys pulled me out of the pool and revived me. After that I was in intensive care for a week and a half, with breathing tubes down my throat. My kidneys shut down and the doctors said they might have been damaged. I also have spinal stenosis, which limits my mobility. I have heart disease and had to have bypass surgery following two heart attacks. And three years ago I started dialysis for kidney disease. So, yeah, you could say I manage multiple conditions.
It can be frustrating, but I’ve learned to cope as best I can. I learned how diabetes can affect you and how to manage it with my diet. I started testing my blood sugar levels. If it’s low, I know to have a snack before bed or drink some juice first thing in the morning. I’ve learned which foods spike my blood sugar (like pizza, pasta). I used to love desserts (I still do), but I know that I have to avoid them. I used to take metformin and a couple of other diabetes drugs, but now I’m off those. I control the diabetes pretty well with my diet.
I just turned 75 and had to step down from the board of the National Aboriginal Council on HIV/AIDS. Sometimes I feel depressed. I get tired of treatments, ordering supplies and testing my blood sugar, and I’m sick of dialysis. But I’ve always had an attitude of “just do it.” I have to live with these conditions every day, so I have to do what I need to do to stay healthy. There are days when I don’t want to get up but I tell myself, “You gotta get up. You’ve got things to do.”
You have to get a doctor who’s knowledgeable. And you have to try different things. Before I went on dialysis, I tried yoga, working out, even meditation. I find that meditation lessens my pain.
I’m not a practicing Buddhist but I read a lot about Buddhism because I like the philosophy and psychology behind it. I’m Métis and I find that a lot of Aboriginal teachings are similar to Buddhism.
I’m lucky because I also have a great support system. My wife has been with me for 46 years, and she does so much for me. My son and three daughters check in on me regularly. I also have a couple of friends who help out. One of them has a car so when there’s an emergency, he’s there to help out with a drive.
I still attend lunch meetings at HIV Community Link regularly. Anyone living with HIV in Calgary should try to go to HIV Community Link. They have great supports and resources for people.
Clinical Research Advisor
AIDS Research Program, St. Paul’s Hospital/UBC
It was only after the first highly active antiretrovirals came out in 1996 that the medical community started to view HIV as a chronic condition rather than an acute disease. With effective medication, HIV was no longer a death sentence. But it was more than a decade before we really understood the impact that effective HIV medications would have on people’s lifespan.
As people with HIV aged, many started to acquire chronic conditions. Some of the more common conditions include cardiovascular disease, lung diseases such as bronchitis or emphysema, and certain cancers, as well as depression and anxiety.
People can start to feel that their medical conditions are taking over their life, which is never a good thing. Managing multiple conditions can be especially challenging for people who have already spent years taking HIV medications and using the medical system. People can get pill fatigue, which, in turn, can result in missed doses. They also experience doctor fatigue, which is when you get tired of all the tests and medical appointments. In addition, because healthcare specialists don’t always communicate with one another, patients might get conflicting advice, which can be confusing.
But there are many things you can do to cope with these challenges. First and foremost, I recommend that each person spend time thinking about their own priorities and play an active role in their care. For example, someone who works from home might not mind having to make frequent trips to the bathroom, but people who have to travel for work can’t imagine having to take a pill that gives them diarrhea. Every person has different preferences and priorities, and if your doctor knows about yours, it can help them reassess your treatment plan.
Find a doctor you can talk openly and honestly with. Your doctor might even be able to suggest a lifestyle change, such as diet or exercise, which is always better than having to take more medications.
Getting support from family members, friends, support groups and peer navigators can also be hugely helpful.
Sony Salzman is a freelance writer based in Brooklyn, New York. Her work has been published in The Boston Globe, Al Jazeera America and The Body.
For more on managing multiple conditions, check out CATIE's A Practical Guide to a Healthy Body for People Living with HIV.
This article previously appeared at CATIE's Positive Side, here.
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