Groups Fighting HIV in D.C. Find Lessons in Africa
WASHINGTON – If the nation’s capital were a nation in Africa, it would rank 23rd out of 54 countries in percentage of people with HIV a higher rate than the Democratic Republic of Congo, Ghana, Rwanda, Ethiopia and 28 other African countries.
Just a few years ago, AIDS in Washington had become such a dangerous threat that federal officials in the district’s offices of the U.S. global AIDS effort used to say with somber cynicism that Washington itself should be part of the extraordinary global push.
Washington, they said, should have been the 16th PEPFAR country PEPFAR standing for President’s Emergency Plan for AIDS Relief, which was started by President George W. Bush in 2003 to fight AIDS in 15 countries where the problem was among the worst in the world.
Indeed, Washington is among the worst. Statistically, it has a higher HIV rate 3 percent of all adults ages 15 to 49 are HIV positive than five PEPFAR countries today, according to United Nations statistics.
But Washington, which will be host to the International AIDS Conference next month and will attract attention to the homegrown epidemic from more than 20,000 participants, is finally getting a handle on how to fight AIDS effectively.
The reason is surprising: It has learned from the fight against AIDS in Africa.
That congressionally funded effort has come back to benefit the neighborhoods around Capitol Hill as several PEPFAR veterans returned home to take jobs in the district’s AIDS office. They brought with them strategies and tactics tested in Africa, which gave them newfound confidence that they could turn around a lackluster fight against the epidemic in not just any American city, but the city with the worst epidemic in the nation.
District leaders often reject any comparison involving AIDS between Washington and an African country because it implies that largely African-American communities here are on par with the developing world. But several leaders of the district’s AIDS fight say the link is apt in this specific instance because the African experience has informed Washington’s response.
“I think under the surface [Africa’s lessons] are something people don’t like to talk about. But … it is just such a model that has allowed us to get where we are,” said A. Toni Young, director of the Community Education Group, which oversees several AIDS prevention projects. “… We’ve made this investment to Africa for a reason. We wanted to save lives. We learned from Africa about treatment and treatment adherence.”
The turning point came with a simple decision: Learn the epidemic. For years, the district had failed to do in-depth surveillance of the AIDS epidemic and had perceived it as a problem largely limited to the gay community and injectable drug users. But new data uncovered a new reality: AIDS was centered in the African-American community, infiltrating the general population of heterosexual couples. Nearly 7 percent of all African-American men in the district are HIV positive.
That knowledge changed everything. It meant that the focus should expand more broadly to the entire city but focused specifically on African-Americans, encouraging more to get tested for HIV and starting major outreach efforts to let people know about the risk all around them.
On a recent day not far from Capitol Hill and the White House, about a dozen HIV outreach workers toting bright yellow duffle bags stuffed with condoms and prevention information stood outside of the Anacostia Metro station, waiting for the next wave of passengers to arrive.
When hundreds of commuters emerged from the subway, the outreach team fanned out to meet them, handing out free condoms and sharing facts and common misperceptions about AIDS. The process repeated itself about every 10 minutes with the arrival of each new Metro train. After a couple of hours, they had handed out hundreds of packs of condoms and had persuaded 21 people to take an HIV test with an oral swab in a Chevy van parked nearby.
“You have to know your status, man. I’d rather be safe than sorry,” said Alvern Harris, 25, as he waited for his results. “What we do is a reflection to the younger generation. If we don’t, they won’t, and that’s another generation’s curse, another generation dying.”
This type of outreach mirrored programs in many African capitals, where young people funded by the U.S. government routinely reach out to their peers in the street to engage them in discussion about AIDS and to pass on knowledge of how to protect themselves. The African efforts also included innovative ways to test people for HIV, including going door-to-door and setting up testing days in community centers and churches, tactics also started or being considered in Washington. But the first step getting the data was the most critical one.
“PEPFAR set up a very structured model for evaluating programs and outcomes around the work being done in Africa to address the HIV epidemic,” said Tiffany West, who directs HIV surveillance for the D.C. Department of Public Health. “[D.C. government] was really good at bringing some of those international best practices into the domestic realm.”
Even with these lessons, the Anacostia neighborhood and others like it in the Bronx, New Orleans, Los Angeles and elsewhere still struggle against high HIV infection rates. This is somewhat due to the belated response in recent years to the growing domestic epidemic in African-American communities as well as the inherent difficulties in treating drug addicts and alcoholics, who with high frequency stop taking treatment.
Anacostia is located in Washington’s Ward Eight, right in the backyard of the White House and Congress, and the African-American men and women who live here are disproportionately affected. Black men in D.C. accounted for nearly three-quarters of cases among men, and black women accounted for about 90 percent of cases among women. The disparity is not exclusive to the district. According to a report by the CDC in 2007, the prevalence rate for blacks in the United States was almost eight times as high as that of whites.
One of the outreach workers, Erika Williams, 41, said the high rates among African-Americans was one of the reasons she wanted to educate fellow blacks about the danger.
“My friend passed away from HIV,” she said. “What she had offered to her then is so much different now. It might have made a huge difference in her life.”
Global AIDS Strategy Comes Home
The turnaround in the district started with the hiring of Marsha Martin in 2005, a former special assistant to the Secretary of Health and Human Services who traveled around the world to learn about other approaches and continued with AIDS experts who had worked in Africa. The Washington effort is now led by George Pappas.
“PEPFAR brought [countries in Africa and Asia] a scientific intervention, fully based on data and now you could say we are re-importing that idea,” Martin said. “We are coming back full-circle to strengthen our response.”
Perhaps the biggest influence on Washington’s AIDS fight was Martin’s successor, Shannon Hader, who became the district’s AIDS czar after spending three years as CDC country director in Zimbabwe and senior scientific advisor to PEPFAR in Washington.
“To come back after a few years of really seeing tremendous transformation and scale up in those approaches abroad and to have not found a whole lot of progress domestically, that was what was bothersome,” Hader said. “We had to get everyone to realize this is not as good as it gets. We can do better and it’s time to shoot higher”.
For Martin and Hader, a key partner was Alan Greenberg, a CDC colleague of Hader’s, and now professor of epidemiology and biostatistics at George Washington University.
In late 2007, the district’s AIDS office published a report rich in data on the local AIDS epidemic the first such report in five years.
The new data showing that AIDS was primarily affecting the African-American community led Hader to tell organizations working in the field they must change tactics. She wanted them to target the African-American population through the entire southeastern part of the city, not just south of Capitol Hill across the Anacostia River. She wanted them to start more aggressive outreach in the neighborhoods adjacent to Capitol Hill as well.
The ideas, many sparked by efforts tried in urban African areas, began to tumble out. Organizations decided to more closely link their outreach efforts to clinics and services that immediately secured care and treatment for those found positive. They talked to faith-based leaders. Those leaders added proactive messages about HIV to their sermons. Churches even held “testing” days in which parishioners or anyone in the community could come, get tested, and learn their status.
They also set up new protocol at six out of eight hospitals to automatically offer testing to all patients unless the patient refused to take the test. They persuaded organizations to train outreach workers and then send those workers into areas with high pedestrian traffic, such as outside Metro stations. And more recently, they stationed people at several Department of Motor Vehicle locations, offering grocery store gift cards as incentives to take an HIV test.
In 2006, the district tested 42,000 people for HIV.
In 2010, it tested 110,000, a 261 percent increase.
Other encouraging early signs: the district reduced the number of new HIV infections to 825 people in 2010 from 861 the year before, a 4 percent reduction; increased the proportion of those infected receiving care to 84 percent in 2010 from 75 percent in 2009; and in that period, for those on treatment, increased by roughly one-third the number of people who had undetectable viral loads which greatly reduces the chance of transmitting the virus to others.
Still, Washington faces many challenges in its fight against AIDS, and officials want to see a longer track record of positive signs before saying that they have turned around the epidemic.
“We’re going to need a couple of years more data to confirm a dramatic decrease in (HIV) incidence,” Greenberg said.
Stumbling Blocks to Progress
One of the difficulties today is that many primary care physicians refuse to regularly screen patients for HIV, and two hospitals in the city do not offer routine HIV tests. An estimated 20 percent of HIV-positive people in the district don’t know their status. Young men who have sex with men and African-American women and men continue to be diagnosed at alarming rates. And the city still needs to reduce the numbers of people dropping off treatment.
“We do a good job getting people into care,” said Pappas, Washington’s current AIDS director. “But they don’t stay in care. They drop out. They stop taking their medication for so many reasons.”
The reasons reveal the degree of difficulty in fighting AIDS. Some HIV-positive people are homeless. Some are addicted to alcohol or drugs. But other factors come into play, including the fear many HIV-positive patients have that their status will be exposed.
Breaking Through Stigma
D.D. Rogers, a 56-year-old HIV-positive grandmother, used to live across the street from the Max Robinson Center in Anacostia, where she had to go for treatment.
Despite the proximity, Rogers took the long way around, walking the perimeter of the old brick building on Martin Luther King Jr. Avenue and entering a back entrance, not wanting to be seen.
“I just remember the whispers,” Rogers said. “Some lady said, ‘Oh, she got that thang,’ and that hurt me deeply.”
But eventually she decided to walk straight across the street. In 2010, Rogers entered the clinic through the front door and asked medical director Siham Mahgoub if she could volunteer.
The edifice is well-known by those who live there. During the 1960s and 1970s, it served as a funeral home where the community gathered to mourn their dead. In 1993, the building became less about death and more about the living when it became the Max Robinson Center, named after the broadcast journalist who died from AIDS-related complications.
Inside and away from the judgment of the streets, the feeling is warm. Rogers and other long-time patients greet one another in the waiting room with handshakes and hugs. Upstairs, a large room buzzes with a daytime arts program for the more vulnerable patients.
Rogers’ frequent volunteering turned into a full-time opportunity last year, when she was hired by Positive Pathways, a peer-to-peer engagement as an effort to solve the district’s problem with treatment adherence.
“She gets her energy from the clinic,” said Dr. Mahgoub. “There have been so many success stories with D.D.”
Recalling her old fears, she said, helps her relate to patients in her new role as a community health worker.
“One lady, she’s so scared to come here for care or meetings because this is the corner where she used to do tricks and do drugs,” Rogers said. “But I help them work around that, we go somewhere else.”
She meets wary clients for coffee or orange juice at a fast food restaurant instead of the clinic, she said, or sometimes she role-plays, pretending that the patient is actually accompanying her to an appointment of her own at the clinic. It doesn’t matter to her. What matters is that her clients stay on antiretroviral treatment.
“I tell them ‘I’m just like you,’” said Rogers, who suffered from a long-time addiction to crack cocaine. “But you don’t have to stop living just because you have this disease.”
During a recent meeting in the basement of the Robinson clinic there was hopeful banter between Rogers and a fellow advocate. They said if more people opened up about their status, it would destroy stigma and prevent misinformation about the disease.
But stigma prevents even some advocates to share their status. One of Rogers’ colleagues shook her head “no,” when asked if she would reveal she was HIV-positive. She said she fears that her grandson, who attends private school nearby, would be ostracized.
Pappas, the District’s AIDS head, said stigma is a much bigger problem in the District than it is in many places in Africa. “No one talks about it we’re barely reaching churches, something I saw accomplished years ago in Africa,” he said.
He said the District still has plenty to learn from the international experience combating AIDS, whether it’s using churches as centers to reduce stigma or door-to-door testing. But he also said that for those arriving in Washington for the International AIDS Conference in July, they will see a city that is fully engaged in fighting AIDS, a major change from years ago.
This Isn’t the D.C. of 10 Years Ago
Across the Anacostia River from Capitol Hill, one of the more vibrant community organizations fighting AIDS is the Community Education Group. Young, its director, remembers the old ways of fighting AIDS before Martin, Hader and Greenberg, among others.
“It was kind of like the wild, wild West,” she said. “Who got there first got [funding]. Who shouted the loudest got it. Didn’t matter if you were right, didn’t matter if you could prove efficacy of what you were doing. Somebody liked you, so you got it. There was no infrastructure, nobody got it, surveillance forms in the basement.”
With the arrival of the PEPFAR veterans, Young’s organization set out to permeate their communities and test as many people as they could. More importantly, they started linking recently diagnosed HIV-positives to care.
Community Education Group trains nearly 30 people a year to become HIV testers. The rule is that they must come from Wards 6, 7, or 8 the same neighborhoods they will ultimately serve. The newly certified go on to work with a variety of HIV groups, but many will stay with Young and carry on testing on the streets corners, universities and more recently, churches.
“People should know we are not the Washington, D.C. you read about 10 years ago. We arrived late to the game, but our epidemic is very much under control,” Young said.
She said that the lessons of Africa, and the lessons of D.C., should continue to spread across America. She’s confident that will happen.
“If not for PEPFAR, we wouldn’t have the National AIDS Strategy,” Young said. That strategy “tells us we need academics, we need federal partners, we need government partners, community partners and individuals in order to turn this whole thing around.”
To view more stories in the “AIDS: A Turning Point” series, click here. GlobalPost’s reporting on global heath is made possible in part through a partnership with the Henry J. Kaiser Family Foundation as part of its U.S. Global Health Policy program.