Clinically Speaking: Questions to Ask Your Healthcare Provider About Your HIV Treatment
Treatment for human immunodeficiency virus (HIV) has taken major leaps forward in the past decade. To stay up to date with the latest treatments and advances, it’s important to have a good working partnership with your healthcare provider (HCP).
We talked to Jessica Zajesky, R.N., care coordinator for the HIV medicine division at the Albany Medical Center, about questions you can ask your medical team about your HIV treatment.
What is ART?
ART stands for antiretroviral therapy. ART is a group of specially targeted, effective medications that lower the amount of HIV in the body. There are several classes of these drugs, and each class can treat HIV during different stages of the viral life cycle.
When does treatment for HIV begin?
Ideally, treatment for HIV begins as soon as you’re diagnosed. The sooner you can reduce your viral load, the easier it is to avoid damage to the immune system. The national goal for getting people into treatment after diagnosis is 30 days.
What are the latest advances in HIV medication?
We’ve come a long way from the old treatment option of swallowing handfuls of pills all day every day. In many cases, treatment now means taking one pill a day, making HIV more easily managed than even diabetes or heart disease. There are also prevention medications available for those who may be at high risk. In addition, the Covid-19 vaccine development led to advances in messenger RNA (mRNA) technology that we hope might be the key to unlocking an HIV vaccine in the future.
What are different ways to take HIV medication?
HIV medications can be oral, with the latest drugs providing a once-daily option. There are also injectable options that can be administered monthly or every two months. On the horizon, we see the implantable version of these drugs, so people can get medication implanted just once a year. If a person has developed resistance to a treatment medication or class of treatment medication, they might switch to a combination of medicines or infusion. Infusion is reserved for people who have developed resistance to multiple drugs.
What kind of healthcare provider treats HIV?
An infectious disease specialist treats HIV. However, as advances in treatment move forward, primary care providers can usually handle monitoring and treating uncomplicated cases. Treatment from a specialist is not always required anymore, and this is great news for people who live in rural areas or far away from a major medical center.
What are some side effects of HIV medication?
At the beginning of treatment, as the body gets used to the HIV medication, some people experience nausea, vomiting or diarrhea. If this happens, your HCP can prescribe medication for you to help reduce these symptoms. Other side effects may include those you’d see with many other medications, such as dry mouth or headache. Some of the older medications can cause kidney damage or bone loss, but most providers will try to avoid prescribing these if possible. They are generally only used if a person has multi-drug resistance, meaning that the strain of the virus is no longer responding to certain drugs. And if a person is taking the older medications, the doctor will monitor their kidney function and calcium levels closely.
What are some reasons people miss doses of their HIV medication?
Some barriers to treatment can be easy to identify and fix. These include the same reasons we all forget to do things: family responsibilities, work or a vacation where you can’t access your insurance or prescription refill. These can lead to an occasional missed dose, which can be addressed somewhat easily. Consider setting an alarm on your phone, pre-pouring meds into pill-sorting boxes if OK’d by your HCP or pharmacist, or working with your healthcare team to plan ahead for vacations.
Some barriers are harder to overcome. A diagnosis of HIV is traumatic, and treatment may trigger anxiety, depression or unresolved trauma. Shock, processing negative reactions from family and friends, or facing the stigma around HIV: Those can cause real trauma. It’s important to get mental healthcare or any other services needed to help you manage the emotions that come up with a new diagnosis. We need to treat the whole person and provide comprehensive care.
There’s also treatment fatigue. Sometimes older treatments require 15 to 20 pills per day. It’s exhausting. If you can’t switch to a regimen with fewer pills, you can work with your doctor to schedule what we call a drug holiday, which is a medically planned and approved temporary stoppage of medication. Those can be risky, however. Viral loads could spike, and because this virus is clever, it can develop resistance to the drugs during a holiday. Resistance is tough to overcome.
How can I be a partner in my care plan and participate in shared decision-making?
Take your medications every day as prescribed. Have a conversation with your provider and be honest about your fears or any barriers you might be facing. Don’t be afraid to ask questions. Sometimes it can be uncomfortable to address issues about HIV, but your medical team has heard these questions before and should be comfortable discussing them openly.
If you’re really uncomfortable with bringing something up, write it down on a piece of paper or bring a friend to the appointment who can ask the question for you. If you’re struggling to connect with a provider, look for one who makes you comfortable. Remember: You are in the driver’s seat, and you are the boss of your healthcare. Don’t be afraid to speak up.
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