Poverty, stigma and other issues can make the southern United States an especially difficult place to have HIV/AIDS. Unfortunately, the number of people in this situation is disproportionately high—the South has some of the highest rates of HIV diagnoses in the nation.
Though global funding for HIV/AIDS has declined in the last few years, it has actually risen in the U.S., largely due to a boost of attention and giving in the South. This falls in line with a larger recent increase of philanthropic activity in the region. LGBTQ-related funding, which often overlaps with or encompasses HIV/AIDS funding, is also on the rise nationwide, and particularly in the South.
Gilead Sciences is a leader in the southern U.S. HIV/AIDS funding charge. Gilead is the California-based biopharmaceutical company behind Truvada, the only drug approved in the U.S. to prevent HIV infection. It comes in second in worldwide HIV/AIDS funding behind the Bill and Melinda Gates Foundation, and was among the top five funders of U.S. LGBTQ issues in 2017. It is joined in the endeavor to fight HIV/AIDS in the South by philanthropies like the Elton John AIDS Foundation and the Elizabeth Taylor AIDS Foundation, and collaboratives like the Southern HIV Impact Fund (of which Gilead is a member) and the Out in the South initiative from Funders for LGBT Issues.
Gilead focuses its grantmaking on projects that improve the health of local communities within its therapeutic areas of interest. In 2017, it launched a “Commitment to Partnership in Addressing HIV/AIDS in Southern States” (COMPASS), a 10-year, $100 million funding program.
Korab Zuka, Gilead's head of corporate grants, updated us on this undertaking, which has already spent tens of millions.
Why Is Gilead Focusing on the U.S. South?
The South holds about one-third of the U.S. population, but is home to an estimated 44 percent of people living with HIV in the country. As elsewhere in the U.S., HIV/AIDS disproportionately affects black women, black gay and bisexual men, Latinos and transgender women in this region. About 60 percent of black gay and bisexual men who have been diagnosed with HIV in the U.S. live in the South.
This part of the country also has the highest infection rates for people in prisons and jails. Rates of HIV among young people, especially LGBTQ youth, are consistently higher in the South. Along with economic disparity, the lack of Medicaid expansion, HIV/AIDS-focused health care, community acceptance, education and transportation all play a role in this regional problem. Gilead is approaching this complex challenge through community-based partnerships and programs.
How Gilead’s COMPASS Works
COMPASS supports and partners with three organizations in a “coordinating center” model. Each center engages with local organizations to address different aspects of the crisis. Emory University’s Rollins School of Public Health focuses on capacity-building and shared knowledge. Well-being, mental health, substance use and trauma-informed care programs are led by the University of Houston’s Graduate College of Social Work. The Southern AIDS Coalition focuses on stigma reduction and culturally appropriate care.
Zuka says that while Gilead provides funding, evaluation and oversight, the centers generate all the community programming and lead the local organizations. Within this model, Gilead places enormous trust in the three centers based on their proven expertise in the focus areas and established connections with communities across a nine-state deep-South region—Alabama, Georgia, Florida, Louisiana, Mississippi, North Carolina, South Carolina and Tennessee.
Through the centers, COMPASS provides three types of support to nonprofits: trainings, shared learning opportunities, and grants. Gilead has given 53 grants totaling $2.9 million to local organizations. Zuka says that through the entire COMPASS program, it will have invested over $50 million by the end of 2019—spending half of its stated commitment in the first two years of the 10-year endeavor. COMPASS partner organizations and grantees take a broad range of approaches: One creates a video-based curriculum to counter discrimination and improve care for African-American women with HIV, while another cooks and delivers healthy meals to people with HIV and other conditions.
Zuka says one aspect of COMPASS Gilead is “most excited by” are its efforts to share knowledge and best practices through conferences, events and “listen-in” sessions that connect members of affected communities, health care providers, nonprofits, advocates, subject-matter experts, harm-reduction agencies, health department reps and others impacted by HIV/AIDS in the South.
Applying an International Perspective to a U.S. Health Crisis
Zuka has a deep personal and professional history in this field: He was granted political asylum in the U.S. after founding Kosovo’s first LGBTQ equal rights organization. He has worked with disease-advocacy groups for people with HIV, hepatitis C and others. He also assisted the United Nations in distributing international funding in postwar Kosovo. These experiences laid the groundwork for him to help Gilead and COMPASS reach the grassroots groups best positioned to assist southerners with HIV/AIDS.
Of working with the U.N., he says, “What we found long-term was, we could make far more of an impact once local organizations were up and running, because they had the deepest connections to the communities they served.” He says COMPASS mirrors this model in that it seeks effectively and efficiently to “disburse funding to organizations who profoundly understand the region and are united by a shared goal.”
“In general, I believe anyone involved in philanthropy, at any level, needs to engage more in active listening to what communities truly need,” Zuka says. “It’s important for funders to not assume they have all the answers up front. This is why ongoing evaluation metrics and data will be so important to how we will deliver on COMPASS through the course of our [commitment].”
COMPASS Looks Forward
Zuka cites the falling acceptance of LGBTQ individuals among millennials as a significant concern for Gilead and other funders and service providers in this field. LGBTQ media advocacy organization GLAAD’s recent Accelerating Acceptance Index showed a decrease in comfort levels among millennials with the LGBTQ community; a drop from 53 to 45 percent in the second consecutive yearly decline.
“Coupled with the stigma and discrimination we already know is disproportionately impacting the South, this is very alarming, in light of the current severity of the HIV/AIDS epidemic,” Zuka says. GLAAD coined the term “Southern Discomfort” to describe southern reluctance to embrace LGBTQ communities. Gilead is now partnering with GLAAD to counter this stigma and raise awareness of HIV/AIDS in the South.
Gilead’s giving focuses “on the power of partnerships,” Zuka says. He says COMPASS and its other local collaborations that address diseases like hepatitis C and cancer allow it to reach “some of the most vulnerable populations” and address the “true barriers” that make epidemics worse.
Because ending HIV/AIDS is a complex and layered struggle, there is plenty of room for philanthropists and philanthropies of diverse interests to make a difference. Funders working with poverty, LGBTQ causes, youth health and wellness, sex workers, substance disorder recovery, racial justice, community infrastructure and healthcare equity and advocacy can all play a role.
And Zuka points out that any corporate philanthropies that work or invest in the South can embrace the HIV/AIDS cause: “[This] goes beyond just healthcare funders—companies with a significant presence and commitment to the region should also be at the table.”
The Cost of a Crucial Drug
While Gilead spends billions annually on research and gives away millions to help people with HIV/AIDS, it has long been criticized by some patients, AIDS activists and lawmakers for the high price of Truvada. This drug now costs about $25,000 a year in the U.S., while generic versions sell for less than $100 per year in other places, including African countries. This price and controversial government patents for the drug were the topics of a May 2019 hearing of the House Oversight and Reform committee.
A few days before the hearing, Gilead announced it will donate up to 2.4 million bottles of Truvada annually to the Centers for Disease Control and Prevention (CDC) for up to 200,000 uninsured Americans at risk for HIV for up to 11 years. According to Gilead, approximately 18 percent (about 200,000) of the estimated 1.1 million Americans at risk for HIV currently receive Truvada as a preventative treatment known as PrEP.
“The real cost of Truvada is about $60 a year. If you really wanted to cover everybody, you’d cut the price to everyone,” HIV researcher Rochelle P. Walensky, M.D., MPH, of Massachusetts General Hospital told the New York Times.
Gilead Chairman and CEO Daniel O’Day testified: “If we had lowered the price of our medicines even a decade ago, we wouldn't be sitting here today with the innovations that are changing the face of HIV/AIDS.” He estimated that Gilead has spent “roughly $1.1 billion on R&D related to Truvada.” Gilead made more than $3 billion on Truvada in 2018.
O’Day also said the company's patient access programs and drug donations to the CDC ensure “price doesn't get in the way during this period of… patent exclusivity.” Gilead runs multiple U.S. programs to make its therapies more accessible for qualified people who are uninsured or need financial help. Several generic drugmakers are slated to begin selling copies of Truvada in the U.S. over the next few years.
We asked Zuka about the ongoing controversy over the expense of Truvada, and whether the current price undercuts the company's philanthropic efforts to help people with HIV. He says Gilead is proud to have “robust access programs” that make sure “people who need our medicines can get them.” He also says the company knows “medicines, science and innovation alone cannot solve the challenges that patients and communities worldwide face in accessing the best possible care, and that’s where our corporate giving programs play an important role.” He mentions both COMPASS and Age Positively, a Gilead initiative launched in early 2019 that supports people aging with HIV, as crucial components in the fight to alleviate this epidemic, which has “an unequally heavy impact” on marginalized populations.