I’ve been on PrEP (pre-exposure prophylaxis) for a while, and I just had my latest checkup with my provider. Everything is normal, but my provider says I should switch from Truvada to Descovy because it’s less harsh on the kidneys. Curious what you think?
Hi there, and thank you for this relevant and very timely question. The decision to switch from Truvada (emtricitabine/tenofovir disoproxil fumarate) to Descovy (emtricitabine/tenofovir alafenamide) is one that holds medical and ethical relevance. I hope I can help you understand the complications here.
A Word About “Should”
First off is dismantling the notion that a provider has the right to tell you what you “should” do with your body. It reflects an antiquated medical model in which a prescriber is in the parentified role of “expert” and the rest of us are passive “patients.” The problem with this top-down approach is that it rarely fosters engagement, empowerment, or consistent adherence to medications.
I feel we’re better off using a “consumer” approach instead of a “patient” approach. The consumer approach takes into consideration that we have the right to seek medical care from providers who offer us information, options, respect, and support. It reminds us that as consumers, we have the right to go elsewhere if a medical professional is unable or unwilling to act ethically and collaboratively, or to use medical facts in their decision-making process.
When we are considering an opt-in regimen like PrEP, it is of great importance that providers use communication, partnership, and encouragement of free will in order to get consumers to “buy-in.” PrEP uptake in the U.S. has been slowest in communities who have the most reasons to historically mistrust medical professions. If that’s even going to begin to change, then it will be necessary to shift how wellness is commonly practiced—from an authoritarian, infantilizing approach that exacerbates power imbalances to a trauma-informed model that seeks to not perpetuate systemic abuses that compromise a person’s physical and emotional ability to thrive.
“Should” implies there are rigid and inflexible standards that you must defer to in order to be a compliant patient. When a care provider uses “should,” it communicates, “I am the one with the authority and power, and you are not.” It fails to consider your own sense of independence, autonomy, and ambivalence about switching PrEP regimens. This is why I strongly caution providers against using this hierarchical strategy in their communication with their consumers.
Truvada vs. Descovy
Now let’s focus on Descovy and Truvada. Both pills contain a combination of two HIV medications. Truvada, which was approved for PrEP by the U.S. Food and Drug Administration (FDA) in 2012, contains emtricitabine and tenofovir disoproxil fumarate (TDF). Descovy was approved for PrEP in 2019; it also contains emtricitabine, but instead of TDF, it contains a newer version of tenofovir called tenofovir alafenamide (TAF).
The U.S. FDA approved daily use of Descovy as a drug that is “non-inferior” to Truvada for PrEP, meaning they both work equally well to prevent HIV in cisgender men and transgender women. Unfortunately, no studies to date have been conducted that demonstrate how well Descovy protects cisgender women and transgender men.
So if you’re a cisgender man or transgender woman who’s already taking Truvada for PrEP, and your prescriber has recommended (but not “shoulded”) that you switch to Descovy, how do you make the healthiest decision possible? In order to make this choice, it’s important to be clear on what we know—and do not know—about these two drugs.
Safety and Toxicity
About one in 200 people may have decreased kidney function because of taking Truvada for PrEP. Those who do are more likely to be older, have diabetes, and/or have chronic high blood pressure. Since Descovy deposits less tenofovir into the kidneys, it may be a preferred option over Truvada for those who are already experiencing renal complications.
However, Descovy has been seen to have at least one side effect that Truvada has not: weight gain. In the only trial where Descovy was tested for PrEP, the median weight gain after 96 weeks was 1.7 kg (or 3.75 lbs). In the Truvada group, the median weight gain after 96 weeks was 0.5 kg (or 1.10 lbs). That is a difference of 71% between weight gain in the Descovy group and the Truvada group.
The other variables that aren’t well known with Descovy are the impacts TAF has on LDL cholesterol levels and atherosclerotic cardiovascular disease in persons who are not living with HIV. We do know that these adverse side effects have been seen in people living with HIV. No objective medical agency has evaluated whether these issues do or don’t pose safety risks for people who are HIV negative and using Descovy for PrEP.
When reviewing the safety data for Truvada for PrEP in 2012, both the U.S. Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) expressed concern about the impact of TDF on the kidneys. Despite the incredibly rare instances where someone using Truvada for PrEP experienced any kidney changes, both medical agencies built renal monitoring into their best-practice guidelines for PrEP back in 2014 so that everyone could use Truvada in the healthiest ways possible.
It is unclear how the CDC and WHO will weigh the similar evidence for Descovy. Just like Truvada, Descovy does have an established history of side effects for people living with HIV. Will an objective medical agency—one with no financial stake in the drug—recommend regular cholesterol lipid screenings and heart monitoring for HIV-negative individuals using Descovy for PrEP? We don’t have the answer to that question quite yet.
Other Issues to Consider: Dosing and Provider Pressure
Another consideration is the issue of “on-demand” PrEP dosing, also known as 2-1-1. While daily PrEP officially remains the most recommended dosing schedule, 2-1-1 has been gaining support over the years.
Although the WHO endorses 2-1-1 as an efficacious way of preventing HIV, these trials were conducted testing Truvada, not Descovy. It is theorized that Descovy will work equally well for 2-1-1 dosing, but we just don’t have any evidence or data yet to prove that. So if you’ve been using PrEP on an “event-driven” basis, Descovy is not indicated for that.
Meanwhile, a larger issue is emerging. In lieu of established safety protocols, some providers in the U.S. are rushing to switch their patients from Truvada to Descovy without their consent. Descovy was only FDA approved on Oct. 3, 2019. Yet less than three months later, my Facebook group PrEP Facts has already seen dozens of consumers of PrEP in the U.S. share that their providers are switching them without their consent—and without prior consultation, discussion, or communication. Their providers are suddenly referring to Truvada as toxic and dangerous, defying more than a decade of safety surveillance and empirical data.
Why are these providers in such a rush? That’s where there is a host of medical and ethical speculation. At best, these providers are naively believing that there are no possible downsides or dangers of switching to TAF from TDF. At worst, noted HIV activist Peter Staley has speculated (as have others) that some providers’ financial relationship with the pharmaceutical manufacturer may be at least part of the reason for this pre-emptive change. This take appears to be backed up by a January 2020 statement by the CEO of that pharmaceutical manufacturer, in which he said they hope nearly half of all people taking PrEP in the U.S. will be using Descovy instead of Truvada by 2021 because of their upcoming “LOE” (a.k.a. Loss of Exclusivity) on Truvada’s patent.
I started talking and writing about PrEP seven years ago in hopes that it would lead to more engaged relationships between providers and consumers, and ultimately greater health outcomes. PrEP is an opportunity to change the narrative on historical mistrust of medical professionals and to build a lifelong rapport founded in choice, collaboration, respect, and consent. When providers make pre-emptive decisions that affect people’s sense of control, without discussing all relevant data pertaining to potential side effects or dangers of switching, it leads to deepening suspicion and speculation about their true motives.
So, dear reader, that was a very long way of telling you that it is your choice what you do with your body. If you have had kidney problems on Truvada, or have any medical condition that could impact your renal functioning, then Descovy might be a better choice. But if you’re not having any kidney complications, and/or prefer the 2-1-1 dosing strategy, then you may want to wait until there are medical guidelines established that will help you make the healthiest and safest decision possible. Ideally, this would be a decision you and your provider make collaboratively. However, if they refuse to give you options and information, you may want to find a different provider in the national PrEP Directory database.