Tina Rosenberg recently published a rather damning article in the New York Times, detailing the outrageous costs associated with the provision of HIV medications in the US. According to Rosenberg, HIV triple therapies that would cost $75 a year in countries like Zimbabwe cost a staggering $39,000 per year in the United States. The Express Scripts “2017 Drug Trend Report,” cited in Rosenberg’s article, indicates that HIV medications comprise an outsize proportion of prescription drug spending across health insurance types in the US. HIV medications were the number one expenditure for Medicaid’s drug budget in 2017 and represented a large proportion of total costs on the private insurance marketplace and for Medicare plans. In total, the US spends about $20 billion per year on medications to treat HIV.
Rosenberg also finds a correlation between the high cost of HIV drugs and viral suppression outcomes. She notes that viral suppression rates in the US lag in comparison to both those of other developed countries like the UK and those of developing countries like Zimbabwe and Kenya. The latest data from the World Health Organization shows that Zimbabwe’s HIV viral suppression rate is around 64 percent. In contrast, the Center for Disease Control lists the viral suppression rate in the United States at 49 percent: a remarkably low figure considering how much money is spent on HIV care.
Maintaining the Health Care Inequality Status Quo
Pharmaceutical companies like Gilead Sciences, one of the main manufacturers of HIV medications, constantly roll out patient assistance programs and grant funding opportunities, such as the COMPASS initiative. Gilead touts the COMPASS (Commitment to Partnership in Addressing HIV/AIDS in Southern States) as a “ten-year, $100 million effort” aimed at addressing “the HIV/AIDS epidemic in the Southern United States.” This program makes sense: the South comprises only 38 percent of the US population but sees approximately 51 percent of new HIV infections annually, according to 2016 data from the Centers for Disease Control. Gilead peppers its literature with buzz words like intersectionality, social justice and structural racism. This is in line with longstanding pushes within public health discourse to address health care disparities, which makes sense when we consider the demographics of the HIV epidemic.
The CDC report that nearly 70 percent of the 39,782 new diagnoses in the US in 2016 involved gay and bisexual men, and black and African-American people comprised about 44 percent. Both populations are disproportionately represented. The statistics are even starker when looking at race, ethnicity and sexual orientation simultaneously. In 2016, black gay and bisexual men comprised the largest subpopulation of new diagnoses at about 26 percent, followed by Latino gay and bisexual men at 18.7 percent and white gay and bisexual men at 18.6 percent. These statistics differ considerably from those of Russia, where the epidemic is primarily associated with intravenous drug use, and Uganda, where the majority of transmissions involve heterosexual sex. That HIV disproportionately impacts people of color and gay and bisexual men in the United States probably elicits little surprise from anyone who has followed the trajectory of the epidemic since the 1980s and 90s.
However, other factors have contributed to the ongoing epidemic. HIV and other illnesses exist within a particular political economy—and LGBTQ, black and Latino people access health care within a system that is designed to maximize profits, rather than produce better health outcomes. In their article “Race, Class, Crisis: The Discourse of Racial Disparity and its Analytical Discontents,” Adolph Reed and Merlin Chowkwanyun explore how an overly simplistic disparities analysis, when applied to social problems, often elides a much more complex nexus of contributory factors. They question the efficacy of regurgitating simplistic explanations like white supremacy, as sufficient to explain the inequalities. Reed and Chowkwanyun further aver that disparities discourse as it is currently practiced “does not tell us with much exactitude what institutions, policies … produce those results.” In the case of the racially disparate subprime mortgage crisis outcomes in the US, Reed and Chowkwanyun argue that disparities discourse obscures how “injustices fit into a larger picture of income stagnation and welfare state instability.”
Disparities within the HIV epidemic related to race, ethnicity, sexual orientation and gender remain a reality. Homophobia and biphobia probably contribute to the fact that 70 percent of new diagnoses occur among gay and bisexual men every year. Sexual health education programs across the country often still exclude content about LGBTQ people; and gay and bisexual men are often stereotyped as hypersexual and therefore deserving of HIV and other sexually transmitted infections. Racial inequities in access to care also contribute to the fact that 44 percent of diagnoses occur among black and African-American people, a rate disproportionate to their share of the population. The infamous Tuskegee Syphilis Study looms large here. This incredibly exploitative study followed black men in the US South who already had syphilis, but denied them treatment so that research scientists might observe the progression of the disease, which can lead to schizophrenia-like psychosis if untreated. The Tuskegee Syphilis Study and other historical instances of medical exploitation involving black Americans have often created a chilling atmosphere of medical mistrust and contribute to the proliferation of conspiracy theories (i.e. the government is injecting black people with HIV). A nexus of homophobia and racial inequality almost certainly contributes to the fact that black gay and bisexual men comprise 26 percent of new annual diagnoses. But what policies drive HIV rates and other health issues in these populations and in the United States generally? What is the role of economic inequality and what material realities are impacted individuals navigating? Why is the viral suppression rate in the United States so much lower than in other countries?
Unsurprisingly, the COMPASS Initiative literature makes no mention of the outrageous costs of the drugs that Gilead manufactures. The $100 million in funding dedicated to “addressing disparities” pales in comparison to the amount spent per person per year to keep people living with HIV on medications. Initiatives like this give the public the false impression that Gilead Sciences is intricately involved in improving access to prevention and treatment. But, in reality, Gilead and other pharmaceutical companies continue to exercise influence over the US Congress to ensure that the price points for their lifesaving drugs remain artificially high. The pharmaceutical industry dictates policy, while throwing money at projects aimed at eliminating disparities; and, in the process, it distracts people living with HIV and their advocates from the deleterious policies that drive health inequality.
Social Justice and Intersectionality for Profit: Disparities Discourse as Substitute for Expanding Health Access and Lowering Costs
People living with HIV often remain unaware of the outrageous costs of their medications because Medicaid, Medicare, private insurance and other entities absorb those costs. But this absorption of costs has a deleterious impact on the health care system as a whole. As a result of the relentless push towards privatization since the 1960s, the Medicaid program has become a shadow of its original self and simply cannot continue absorbing the costs associated with HIV medications. HIV disproportionately impacts low income people, so the fact that HIV medications are ranked number one in the drug expenditures budget of Medicaid should surprise no one. And, as the HIV population ages, Medicare will begin to incur more and more of those costs. The private Medicare plans that the aging population purchases to supplement the public program obviate the urgency of addressing costs before they bankrupt the Medicare and Medicaid programs. The funds allocated for Gilead’s initiatives pale in comparison to the amount of money that Gilead and other companies collect in revenues from the manufacture and prescription of these drugs. Medicare is barred from negotiating prices with pharmaceutical companies, which keeps prices artificially high. And pharmaceutical companies responded to a 1990 law aimed at reducing drug costs for the Medicaid program by reducing drug discounts across the board.
Since the US lacks a taxpayer-supported system analogous to those in countries like Canada and the United Kingdom, absurd HIV drug costs are covered by a slipshod patchwork of Medicaid, Medicare, private insurance, Ryan White funding and marginal patient assistance programs provided by pharmaceutical companies. Because pharmaceutical companies have outsize influence on policy making, negotiating drug prices remains largely off the table. Additionally, attempts at meaningful health care reform have fallen short of guaranteeing access and affordability. The flimsy reforms of the Affordable Care Act still left nearly thirty million people without insurance coverage, and countless people unable to obtain Medicaid in conservative states that opted out of expanded Medicaid funding. Single payer health care, in the form of Medicare for All, gained currency thanks to the presidential campaign of Bernie Sanders. But as Adolph Reed notes, segments of the identitarian neoliberal left “red-baited” Sanders and painted single payer health care and other aspects of his redistributive social democratic agenda as “intrinsically racist and white supremacist.”
Health care disparities should retain our attention. However, the disparities discourse often downplays the role of economic inequality. It fails to critique pharmaceutical companies and does not properly grapple with the fundamental shortcomings of the health care system in the United States. By funding initiatives like COMPASS, Gilead and other pharmaceutical companies can position themselves as advocates of social justice and distract people from their outrageous price gouging and enormous influence on health care policy—influence that is wielded to maximize profits, not improve health outcomes.
Unfortunately, advocates of disparities discourse often appear more concerned about having inequality proportionally distributed across demographic categories than they are about eliminating inequalities entirely. Specialized outreach programs to black gay and bisexual men or to Latino populations might accomplish the aim of making HIV rates more proportionally distributed, but they will not fix the fundamentally broken and unequal health care system in the United States. Until there is a system that simultaneously expands access and lowers costs, the United States will continue to lag in health outcomes. The time for taxpayer-funded health care in the United States is now.