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GlobalPost's John Donnelly and a team of reporters investigate what experts are calling a 'turning point' in the global fight to reduce HIV infection rates. Successes in southern African countries have produced valuable lessons on effective approaches to fight AIDS, lessons that need to be learned in US cities where infection rates remain persistently high — particularly among African-Americans. Meanwhile a political confrontation looms in Washington over critical funding which could threaten gains already made.
Part Two: Washington's HIV infection rates are comparable to many African countries, which have provided critical insight into the epidemic.
Perhaps the biggest influence on Washington’s AIDS fight was Martin’s successor, Shannon Hader, who became Washington DC’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 DC 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, DC 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, DC’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 Boulevard and entering a back entrance, not wanting to be seen.
“I just remember the whispers,” recalled Rogers. “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 located in on Martin Luther King Avenue 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 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 DC’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 into the clinic. It doesn’t matter to her. What matters is that her clients stay on anti-retroviral 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 DC 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, DC 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 DC, 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.”
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.