HIV Drug Prices Keep Rising. Why Is No One Talking About It?

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The state of the HIV epidemic in the United States is a global embarrassment. Currently, we spend more than any other country per person on domestic HIV treatment, yet by almost every metric, our epidemic is worse than that of other wealthy nations. So why the discrepancy between cost and outcome? The problems are multifactorial, including systemic racism, classism, transphobia, and homophobia. Oddly enough, however, egregious price gouging by the pharmaceutical industry has gotten almost no attention, despite its central role in hampering America's HIV response. High drug prices distort our nation's fight against AIDS, forcing the health care system to pay massive markups to pharmaceutical companies and leaving relatively little for other vital services. As a result, we continue to line the pockets of pharmaceutical executives rather than addressing the broad social and environmental barriers to effective HIV treatment and prevention.

In 2014, the federal government alone spent over $17.4 billion on HIV treatment domestically. Of the estimated 1.1 million people living with HIV (PLWHIV) in the U.S., only 62% are receiving care -- meaning the federal government spends more than $25,000 per person. In comparison, England's National Health Service (NHS) spent only £570 million to treat the nearly 80,000 people who accessed HIV care in 2014, spending about $12,000 per person -- less than half the cost in the U.S. These savings are even more dramatic when one considers that NHS England covers every English PLWHIV, while private insurance and other non-federal programs cover many American PLWHIVs. Expensive drugs play a big role in this -- some of the most commonly used antiretroviral drugs are three to five times more expensive in the United States than they are in the UK.

Oddly enough, however, people living with HIV in the UK fare far better than their American counterparts. In 2015, 83% of UK PLWHIV were on treatment, and 78% were virally suppressed. In the same year in the U.S., only 63% of PLWHIV were even accessing HIV care, and only 51% of PLWHIV were virally suppressed. The UK is not unique. More than 60 countries globally are performing better than the U.S. in the fight against HIV in terms of treatment initiation and viral suppression.

The United States is the only higher-income country without a universal health care system, which almost certainly plays a large role in our struggle to address the HIV epidemic. However, services like the Ryan White HIV/AIDS Program offer a model for achieving viral suppression, even under our current system. Serving some of the most vulnerable members of our community, the Ryan White program not only provides access to primary care but also essential support services for people living with HIV who are uninsured or underinsured. By working with cities, states, and community-based organizations, the program has offered a hybrid model for helping individuals access care regardless of their insurance status.

The success of the Ryan White program speaks for itself. According to a study published in Clinical Infectious Diseases, patients with private insurance, Medicaid, Medicare, or a combination of Medicaid and Medicare were significantly less likely to be prescribed antiretroviral therapy and be virally suppressed than those using only the Ryan White HIV/AIDS Program to cover their medical care. Based on these data, comprehensive federal programs like Ryan White should be the focus of the HIV response going forward.

How do drug prices come to play in all this? In theory, Medicare, the largest single source of federal HIV treatment funding, could cover more support services like Ryan White does. Given its current costs, however, this model would be unsustainable. Average Medicare spending per person for PLWHIV was $45,489 in 2014, 59% ($26,761) of which was spent on drugs. In comparison, the average spending for Medicare beneficiaries overall was $11,651, with only 16% ($1,821) coming from drug spending. While drug costs make up the majority of spending for PLWHIV, they represent a mere fraction of the cost for Medicare beneficiaries writ large. With cheaper antiretroviral drugs, we would free up significant sums of money to fund the wrap-around interventions we know work best.

Not accounting for new infections, we need to get more than 400,000 more people onto antiretroviral therapy in the United States. At current costs, that means the federal government will have to spend more than $10 billion on domestic HIV treatment in addition to our $20 billion annual expenditure, [dwarfing even NASA's current annual budget []] of $20.7 billion. Our HIV treatment apparatus is too expensive and inefficient to handle this crisis. We need a radical shift in the way we think about health care, forcing us to spend smarter rather than simply spending more.

Given the history of the HIV epidemic, the most obvious way to address the pricing problem is through community mobilization. However, with some exceptions like the Fair Pricing Coalition, most HIV activist organizations have been disturbingly silent on drug pricing in recent years. Ingeniously and malevolently, pharmaceutical companies have ingratiated themselves into the HIV funding streams, effectively inoculating themselves against criticism.

For example, Gilead Sciences is the second largest nongovernment funder of HIV/AIDS work globally, spending $155.4 million in 2017. One hundred and fifty-five million dollars is a significant funding stream, and we have no intention of criticizing the organizations that have done incredible work with this money. It is important, however, to keep this figure in context. In 2017, Gilead Sciences made $14.2 billion off of its global HIV portfolio. The $155.4 million the company gave in philanthropic contributions represents only 1% of its total revenue from the HIV drugs it manufactures, many of which are the product of taxpayer funding. It cannot be understated that pharmaceutical companies' philanthropy is not altruistic, but rather a strategic tactic to mitigate the threat of negative publicity and activism based on their profiteering. [Editor's Note: In the interests of disclosure, it is worth noting that Gilead is an advertiser on TheBody and TheBodyPro.]

None of this is to say that drug pricing is a trivial problem. In cases like the development of protease inhibitors, profits offer incentives for pharmaceutical companies to take risks and innovate, thereby developing novel, life-saving drugs. In other cases, like Truvada (FTC/tenofovir disoproxil fumarate) for pre-exposure prophylaxis (PrEP), where the research was entirely funded by the federal government or private charities, we should minimize drug prices so that taxpayers do not pay twice. We need to encourage innovation and competition while also guaranteeing access to state-of-the-art care for all. The problem we face lies in our failure to even begin this discussion. If we want to combat the HIV epidemic, activists and community members must finally ask the question: How expensive is too expensive, and when does pharmaceutical greed hurt us more than it helps?

HIV activism has been one of the most transformative social movements in the history of the United States. From the development of antiretroviral therapy to transforming clinical trial design, HIV activists have been catalysts for major shifts in health care writ large. But the silence of HIV activists around drug pricing has been deafening. It is time that we regain our revolutionary zeal and confront the problem head-on. Without affordable drugs, the United States will continue to fall behind its international peers, and global public health will suffer. The status quo is unacceptable, and we cannot allow it to continue any longer.

Christian Antonio Urrutia is a co-founder of the PrEP4All Collaboration and an economics graduate of the Wharton School of Finance at the University of Pennsylvania. James Krellenstein is a co-founder of the PrEP4All Collaboration and a member of the Fair Pricing Coalition. The views expressed here are the authors' own and not necessarily those of the organizations they are affiliated with.