The full version of this article first appeared in the Fall 2014 issue of Willamette magazine.
Americans old enough to follow the news in the 1980s remember the AIDS story vividly: An unknown virus took hold in the U.S. and spread at an alarming rate. The sudden appearance of the virus and its mysterious origin sparked panic and stigma aimed at already-marginalized groups — most often, gay men and drug users. Those afflicted weakened at a precipitous rate. Most died.
AIDS, HIV and fear quickly became part of America’s collective consciousness. And fame offered no immunity. Actor Rock Hudson died of AIDS, and basketball player Magic Johnson contracted HIV. Teenager Ryan White, who got HIV from a blood transfusion, became a symbol of America’s fear when he was expelled from middle school. Tens of thousands of Americans succumbed to AIDS-related illnesses, and media reports showed the syndrome ravaging populations around the world.
“AIDS was so much a part of our world back then,” says Joyce Millen, an associate professor of anthropology at Willamette who was working on health issues in Africa and then studying infectious disease epidemiology in graduate school as the HIV/AIDS crisis unfolded. “It was on the news every night. It was huge; it was devastating; it was scary. It was a global health crisis of a magnitude we hadn’t seen before.”
Yet in time, HIV/AIDS and its modes of transmission became clearer. Compassion and empathy slowly began to replace fear and stigma. Red ribbons and a larger-than-life quilt memorializing the dead spread across the country. Funding and research increased. Progressively more-effective treatments became available.
Although in retreat, the epidemic did not go away. Just ask Millen and Willamette alumni like Hayley Freedman ’09, Edgar Mendez ’12 and Ziv Feinberg ’14, who continue to fight HIV/AIDS on all levels around the world. They, and others like them, perceive a disconnect between the continued prevalence of the epidemic and Americans’ perceptions — particularly as other health crises fill the news, like the Ebola outbreak that began last summer.
A 2011 Kaiser Family Foundation survey showed that only four in 10 Americans reported having seen, heard or read about the HIV/AIDS epidemic in the past year, compared to seven in 10 in 2004. On the Willamette campus, which had an active chapter of the Student Global AIDS Campaign less than a decade ago, World AIDS Day passed without much notice for the last few years.
“As people got greater access to care and to antiretroviral drugs, the numbers started going down, and HIV/AIDS became normalized in wealthier countries, including ours,” Millen says. “It started becoming less scary, less of a death sentence, and it slowly crept off of the popular radar.”
Still a Global Pandemic
Although global rates have been declining over the past decade, about 2.1 million people worldwide still become infected with HIV annually, and 1.6 million people die every year from AIDS-related illnesses, according to the World Health Organization. U.S. public health officials report about 50,000 new HIV infections and 15,000 AIDS-related deaths annually.
A decade ago, Millen, then teaching at Harvard and serving as research director at Partners In Health’s Institute for Health and Social Justice, co-wrote “Global AIDS: Myths and Facts.”
The book, which became a seminal tool for people fighting the pandemic, outlined 10 myths about HIV/AIDS and how to counteract them. To name a few: AIDS is mostly an African problem. (In reality, the illness continues to trouble numerous areas outside Africa.) HIV would stop spreading if people gave up promiscuous sex and drug use. (Actually, socioeconomic structures frequently prevent people from making choices that would protect them from contracting HIV.) And ordinary people in rich countries can do little to help fight AIDS in poor countries. (In truth, AIDS activists have made great strides in fighting the epidemic by raising money and lobbying lawmakers.)
Sadly, Millen says, most of these myths persist today. She and many other public health experts maintain that the biggest challenge continues to be funding. According to UNAIDS, in 2011, governments and donors worldwide spent a total of $16.8 billion to fight the epidemic — far short of the organization’s 2015 goal of mobilizing $22 billion to $24 billion annually for the global AIDS response.
“People feel like we’ve got the epidemic under control, so we don’t need the funding for it,” Millen says. “But the fact is, antiretroviral drugs are keeping people with HIV/AIDS alive while at the same time helping to prevent ongoing spread of the virus. Although the price of the drugs has gone down significantly — largely due to the courageous and timely actions of international anti-AIDS activists — they remain high for the majority of people infected.”
Challenges in Africa
The pandemic has hit sub-Saharan Africa hardest. Seventy percent of all new HIV infections in 2012 were recorded in that region, according to UNAIDS.
Hayley Freedman is one of many Willamette alumni who served in the Peace Corps across Africa, addressing HIV/AIDS issues, and she saw it all. From 2010 to 2013, Freedman worked in Mozambique, where 12 percent of people are HIV-positive. A double major in psychology and anthropology, Freedman helped peer educators in a district health center develop programming to support HIV/AIDS patients.
“Everyone in Mozambique knows someone who is living with HIV, so it becomes a normal thing,” Freedman says. “On one hand, a message is presented by health care personnel that HIV/AIDS is not a death sentence, that you can live a typical, healthy life if you take your medication. It’s normalizing the disease, which, in some ways, is good. On the other hand, a perception is spreading that it’s not a big deal to have HIV. Many think they can take a pill and be okay. Preventative cautions are virtually ignored.”
In Mozambique, Freedman, who recently earned an Erasmus Mundus Programme scholarship toward a master’s in public health at the University of Sheffield in England and the University of Copenhagen in Denmark, saw many social and structural barriers preventing people from getting treatment — and contributing to further spread of HIV. Nutrition, unbalanced gender dynamics, communication problems, mental health issues, widespread stigmas about the virus — these are just some of the challenges she encountered.
“I don’t think people really understand the full complexity of the problem,” Freedman says. “Yes, the global AIDS crisis is important. But you have to address things in a more holistic way. Beyond getting people the antiretroviral therapy they need, there are many other pieces that need to be addressed for them to become success stories.”
Like Millen, Freedman has noticed a decline in people’s awareness of the AIDS epidemic. “As we’re dealing with so many other crises worldwide, AIDS has not received as much attention,” she says. “But when people are still dying of a disease that is 100 percent preventable, we have a humanitarian crisis.”
Problems Closer to Home
Willamette grads fighting the epidemic in the U.S. face some of the same challenges Freedman found in Mozambique. Negative social attitudes toward people with HIV still have a major impact on whether people test for the virus and get proper treatment, says Edgar Mendez, youth technology specialist at Cascade AIDS Project in Portland, Ore. An estimated 1.1 million people in the U.S. are living with HIV, and 16 percent of them don’t know they have it. Among those infected, only 25 percent are successfully keeping the virus under control.
“If you were diagnosed with HIV, it’s not something you’d necessarily feel comfortable sharing with your friends and family,” says Mendez, who majored in politics. “This makes it a lot harder to talk about symptoms, treatment and getting access to care or testing.”
There’s a lot of discussion around the word “clean,” Mendez says, and the stigma that only certain kinds of people get HIV. “Some people feel they can point to someone who’s infected and say, ‘It’s your fault. If you were a different kind of person, this would not have happened to you.’ People who are HIV-positive deserve care and treatment and support and love, and they are not dangerous.”
According to the Centers for Disease Control and Prevention, gay men and people of color are the most heavily affected by HIV in the U.S., partly due to social and economic challenges — lack of access to care, discrimination, stigma, homophobia and poverty.
Ziv Feinberg witnessed these challenges firsthand in summer 2013 when he interned at Bay Area Young Positives, known as BAY Positives, in San Francisco. The nonprofit provides support services for youths with HIV, including a drop-in center that is a safe haven for them to get help.
Feinberg, a psychology major now studying in the clinical psychology doctorate program at The Ohio State University, conducted research on factors influencing infected people’s adherence to treatment. He spent many hours talking with clients at the BAY Positives center.
“Many were not very adherent to their medications, in part because of the negative side effects, or because their lifestyle didn’t allow routines that facilitated taking medicine on a regular schedule,” he says. “For example, some of the medications needed to be taken with food, and they didn’t always have access to food.
“Some of the side effects were pretty distressing, too. A common one is incontinence, which makes it harder to work at your job,” he adds. “A lot of these youths were unemployed, and a lot of them stayed that way because they were not well-educated, and they continued this downward spiral.”
Through the Cascade AIDS Project, Mendez works to counteract the effects of socioeconomic barriers through greater education about the virus. He and his colleagues deliver resources to peer educators in area colleges and high schools. They bring mobile, confidential HIV testing to locations around Portland, and organize “HIV 101” talks at schools, houses of faith and community group meetings.
“Our group tries to be very intentional about reaching out to folks who have not had experience with these conversations,” Mendez says. “We get to be part of a lot of successes because we’re using this opportunity to deliver people services that will have a significant impact on their long-term health and success.”
In his address at the International AIDS Conference in Australia this past summer, former President Bill Clinton noted that the world was on a “steady march” to eliminate AIDS but acknowledged that much still needs to be done. “We need to scale up treatment and get it to those who need it if an AIDS-free generation is to be within our reach,” Clinton said.
Although the challenge may seem daunting, those working to solve it — including Willamette graduates — are optimistic.
“The face of HIV is less intense today,” Mendez says. “It doesn’t have to be a death sentence — it can be more of a continuously managed disease — and that changes what we think about it and how we treat people with HIV. The number of new infections has fallen, and more and more people are taking that first step of acknowledging that it can happen to someone in their community. And that shows significant progress.”