In 2016 nearly 16,000 Americans died from HIV-related causes, and over a million Americans currently live with HIV. Despite the fact that people living with HIV on effective treatment who become undetectable cannot pass on HIV, our nation has failed to curb the rate of new transmissions, which remain stagnant at around 40,000 annually.
We know it doesn’t have to be this way. A daily dose of the preventative medication Truvada, also known as PrEP, reduces the odds of contracting HIV upon exposure by up to 99 percent. Access to this treatment is lifesaving and could dramatically reduce the amount of new infections in a matter of years.
But that’s only if you can afford it.
First approved by the FDA in 2012 and paid for almost in full by U.S. taxpayer dollars, Truvada’s market price stands at around $20,000 a year. That’s because despite the public’s role in funding the research for Truvada, distribution of the drug has been monopolized by the pharmaceutical giant Gilead Sciences. Gilead’s income from Truvada sales in the last year alone totaled at roughly $3 billion.
This story is depressingly familiar: without market competition, Big Pharma companies can set pretty much any price they want for drugs in which they own patents. But the tale of the Truvada monopoly is unique. As Christopher Rowland reported in the Washington Post last month, the Centers for Disease Control (CDC), a Federal Government Agency, actually owns the patents on a the drugs that make up Truvada. That means we as taxpayers own the patents underlying the medication, but the government is allowing the manufacturer to continue to price-gouge consumers. Taxpayers also haven’t recovered a dime from the licensing of the medication, leaving potentially hundreds of millions of dollars on the table that could have been used to expand access to the drug.
The consequences of that failure are staggering. Since the approval of Truvada for PrEP in 2012, there have been nearly 300,000 new HIV diagnoses in the U.S. — and this burden is not being borne equally. Nearly half of HIV-related deaths come from states in the South, where structural and systemic barriers create lower average incomes and depress access to medical care. Additionally, Black and Brown queer communities represent a disproportionate share of new cases. Gilead’s exclusionary pricing is inflicting tragedy on precisely the people who need Truvada most. Indeed, the CDC’s refusal to intervene with a generic competitor suggests that LGBTQ Americans, poor Americans and Americans of color simply don’t matter to the U.S. government.
But there are signs of progress.
Just this week, seven senators, including Bernie Sanders (D-VT) and Tammy Duckworth (D-IL), sent a letter to the CDC and HHS demanding information regarding their closed-door negotiations with Gilead. That same day the Washington Post broke another story that lawyers from Department of Justice were sent to the CDC to investigate the patents.
It’s hard to underscore what a big deal that is, but as our leaders in Washington wake up to the CDC’s failure to bring down the price of the drug, we can’t allow the communities most at risk to be forgotten.
We believe the American people need full transparency into the negotiating process with Gilead. We also demand that any potential monetary settlement with the company be used to fund a Universal PrEP Program aimed at breaking down structural and systemic barriers that prevent the most at-risk communities from accessing the medication. Lastly, these negotiations must result in a PrEP option that costs $20 or less per month. Anything higher will bankrupt public health systems around the country and fall short of what is necessary for a truly Universal PrEP Program.
The American people paid for the development of this drug, and it’s our moral imperative to demand that every one who needs PrEP can get it. With lives on the line, we hope you’ll join us in the fight for justice.
Will Kellogg and Cameron Kinker, organizers with the #BreakThePatent campaign and members of PrEP4All.