The Voices Behind HIV Care
Payers, a patient, and a physician discuss treatments, challenges, and successes
The history of HIV treatment carries an important lesson: impact may not come from a single source, but from the synergy of different things working together.
The HIV treatment landscape began with a single medication. In 1987, the FDA approved the use of the first antiretroviral (ARV) for the treatment of HIV and AIDS.1 Although initially effective, HIV rapidly developed resistance to this single drug.
The turning point of HIV treatment occurred when scientists recognized that outcomes were vastly improved when ARVs worked together within a constructed regimen.1 A number of treatments within 9 drug classes have been approved for use in such regimens between 1995 and 2019.2
Similarly, the dialogue about HIV treatment cannot be led by a single voice. Different perspectives help to illuminate how successes have been defined, what is yet to be achieved, and how solutions might be developed.
What follows is a collection of perspectives on the HIV treatment landscape:
Medical and pharmacy directors from national health plans with experience in population health management
A treatment-experienced person living with HIV more than 14 years
A physician who has treated HIV more than 30 years
Successes in HIV care and treatment
“We have a lot of the tools in place already, and I think this was actually an area of competence for health plans. A lot of the things are underway and getting more sophisticated—that’ll happen as we get more knowledge and experience. I think the opportunity is how we get all of the stakeholders involved in this, not just health plans, but provider organizations, manufacturers of pharmaceuticals and medical devices, and everyone involved in care, especially these complex patients.”
- Medical Director, National Plan
“I was motivated to navigate processes, paperwork, and wait periods [for treatment coverage] simply by having a really good doctor. If adjustments need to be made to my treatment, I have the freedom and power to have those conversations with my doctor, which in turn allows me to do what I enjoy. My doctor isn’t just well versed in HIV, but shows genuine concern and asks about my life and goals. He sends articles and opportunities that are related to my personal interests that have nothing to do with HIV.”
- Treatment-experienced Person Living With HIV
“For some patients, a switch in medication can help a patient feel like a weight has been lifted. I’ve had patients say, ‘I thought this is what it felt like to have HIV’ without realizing it was actually their medication [making them feel that way]. Also, the simplification of being down to 2 pills, or even one, can really make a difference.”
- HIV-treating Physician
Growth in HIV treatment options has results:
HIV- and AIDS-related deaths decreased every year between 2010 and 2015 in the United States3
Challenges in HIV care and treatment
“People living with HIV often experience complications with their disease because of the development of resistance to, or tolerability of, medications or whatever other issue is complicating their treatment. Therefore, they may generate higher costs in terms of utilizing healthcare resources, including hospitalization. They become high-cost members to the plan.”
- Medical Director, National Plan
“Early on, I had to bounce from regimen to regimen, and the side effects became the challenge. Not having someone who can help you navigate the healthcare process is also very difficult. When I first started my journey into treatment, I received a ton of information. It was almost as though I was given a map to Mars and told to drive to Los Angeles.”
- Treatment-experienced Person Living With HIV
“Most of those people who have been living with HIV for 30 years now are in their 50s, 60s, and 70s and may have issues like type 2 diabetes, hypertension, hyperlipidemia, or other chronic conditions. Now the issue is: what impact does HIV medicine have on these other conditions? I think it’s unfortunate that treatment-experienced people have more complex treatments than people who have been more recently diagnosed.”
- HIV-treating Physician
Challenges may result in lack of treatment
~25%of people living with HIV in the United States are not receiving care3*
*In 2018.
Future considerations for HIV treatment
“I think pharmaceutical manufacturers can be helpful if they notice and communicate something that we’re not aware of—it could be as simple as a representative talking to a doctor. It could be that the manufacturer interacts with prescribers and can share insights on barriers—we don’t have that visibility, so raising that awareness can be key in a good collaboration.”
- Pharmacy Director, National Plan
“The most important support that a person can get is from his or her medical provider. It’s important for medical providers to not add to the stigma and to reassure that there’s nothing wrong with you if a treatment doesn’t work. That reassurance motivates a person to stay on their treatment journey.”
- Treatment-experienced Person Living With HIV
“If I’m seeing a newly diagnosed patient, the first visit is the most important to get to know the patient well. I would never have that patient in for a 20-minute visit, I try to have them in for an hour so that I can understand their symptoms and support system. It used to be standard to not start treatment at the first visit, but now most patients get started on treatment right away.”
- HIV-treating Physician
References:
1. Forsythe SS, McGreevey W, Whiteside A, et al. Twenty years of antiretroviral therapy for people living with HIV: global costs, health achievements, economic benefits. Health Aff (Millwood). 2019;38(7):1163-1172.
2. FDA approval of HIV medicines. AIDSinfo website. https://aidsinfo.nih.gov/understanding-hiv-aids/infographics/25/fda-approval-of-hivmedicines. Reviewed February 17, 2020. Accessed May 17, 2020.
3. Centers for Disease Control and Prevention. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 dependent areas, 2018. HIV Surveillance Supplemental Report 2020;25(No. 2). http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published May 2020. Accessed July 21, 2020.
FSTOGM200020 July 2020
