"Doc, I thought you said it was safe for me to be on Truvada for PrEP. My Facebook and Instagram are full of ads telling me that I should be a part of a lawsuit. Should I get off PrEP?"
As clinicians, we hear patient after patient share the same story. They are considering, or are using, the drug emtricitabine/tenofovir disoproxil fumarate (Truvada) for pre-exposure prophylaxis (PrEP) and simultaneously seeing a barrage of advertisements for a class-action lawsuit on social media and television, with frightening warnings like "Life-Threatening Side Effects" in bold letters.
As public-health leaders, we are concerned that these often misleading and inflammatory advertisements are causing people to decide not to start PrEP or, in some cases, stop PrEP altogether. PrEP is a critically important component of the national plan to end the HIV epidemic in the United States by 2030.
The class-action lawsuit is being mounted against Gilead, the manufacturer of Truvada. It is based on the allegation that Gilead withheld the release of emtricitabine/tenofovir alafenamide (Descovy) for PrEP -- a new drug with statistically fewer bone and kidney side effects in clinical studies -- to maximize sales of Truvada.
This lawsuit is mainly focused on the long-term treatment of people living with HIV. But that's not the message our actual PrEP users are getting. Instead, they are concerned that the message conveyed by clinicians and public-health leaders alike -- that "PrEP is safe" -- may not be true.
Data from New York City and Atlanta confirm that concerns about safety and side effects continue to be a barrier to PrEP uptake, even though it is proven to be safe and effective. However, data also show that fewer than 1% of participants discontinued Descovy for PrEP because of side effects. As with any drug, it's important to consult with your physician, but evidence is clear that, for most patients, the benefits far outweighed any risks associated with either Truvada or Descovy for PrEP.
In public health, we have been waging an uphill battle to raise awareness about PrEP and get PrEP scale-up access and regular use in communities disproportionately affected by the HIV epidemic. It is therefore critical that social media platforms, and the organizations sponsoring these advertisements, immediately remove or re-message the ads to make it clear that Truvada for PrEP is extremely safe.
The desire to hold a corporation accountable for making lifesaving medications accessible at an affordable cost is both important and laudable, but the messaging of this effort must not create confusion that can lead to false assumptions and more mistrust of a strategy that is proving very effective in reducing the number of new HIV infections.
Public health has worked vigorously to counter misinformation about PrEP. These ads have the potential to reverse the progress we have made and hamper our efforts to end the HIV epidemic.