At a community centre down the street from Capitol Hill, J’Mia Edwards let out a throaty cough as she flipped through her smartphone.
“It’s a cold,” she explained, “but when I first caught it my 10-year-old son kept coming into my bedroom saying ‘Mommy, please don’t die’.”
Her son’s fears were not unfounded – a summer cold could morph into an infection that could kill Edwards, 31, who has AIDS, a deadly virus.
“I told him, ‘I’m not gonna die’,” she said. “But in my head I really thought I had pneumonia. I couldn’t get out of bed. I thought that was it.”
A staggering 2.7 per cent of people aged 13 and older in Washington, DC are HIV positive. Beginning Sunday, the city is hosting the International AIDS Conference, a week-long event highlighting worldwide progress against the disease, residents are grappling with the fact that the country’s capital has a higher rate of HIV infection than any other city in the US.
And some groups here have been hit harder than others.
According to the DC Department of Health, 4.7 per cent of the city’s African-American residents are infected with the disease, compared to 1.5 per cent of whites. In the poorest neighbourhoods, the infection rate for black women has almost doubled in the last two years – from 6.3 per cent to 12.1 per cent.
After a jittery day in the emergency room, doctors gave Edwards, who is African-American, and her family the news they were hoping for: she did not have pneumonia, but bronchitis.
For people living with HIV, monitoring the body for any sign of illness is key to survival, but activists say that many in Washington, DC have no idea that they are infected. And there is little public awareness about the sheer scale of the epidemic.
“It’s just shocking,” said Adam Tenner, the executive director of Metro TeenAIDS, a non-profit organisation. “Even after 11 years working in this field, no matter where I go and strike up a conversation, I’ll find someone who doesn’t know that Washington, DC has the highest rate of HIV/AIDS cases in the country.”
According to Tenner, many in the city have the attitude that HIV/AIDS exists “outside their bubble”, and that a lot of attention and money has been funnelled towards solving the crisis elsewhere.
“A dollar goes a lot further in Bangladesh, so it’s tempting to do that,” he said. “But we really need that help right here in Washington, DC.”
Just a 15-minute drive from the White House, in a black neighbourhood battered by gun violence and high homicide rates, Edwards and a couple of her peers stood on the street in front of a winnebago, armed with condoms and cotton swabs.
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Edwards works for Metro TeenAIDS on a mobile testing team. Her goal is to conduct as many rapid result AIDS tests as possible.
“I’ve given out too many positive results in my community,” said Edwards. “You have to learn to leave your emotions aside. It sounds harsh, but we can’t both be out here crying.”
African-Americans account for nearly half of the estimated 50,000 people who contract HIV every year in the United States. And experts blame a toxic mix of poverty, stigmatisation of the disease and lacklustre healthcare.
“Many of the same social and environmental factors that put African-Americans at increased risk for heart disease and diabetes are the same ones fuelling the HIV epidemic in black communities,” said Donna McCree from the Centre for Disease Control.
“Our research indicates that people who can’t afford the basics in life may end up in circumstances that actually increase their HIV risk,” she said. “And if you don’t have the means to see a doctor you may not get an HIV test, or get treatment.”
‘Outside their bubble’
And the unwillingness of some in the black community to acknowledge the disease has only made it harder to fight, some health advocates say.
“It’s been a challenge for us to wrap our arms around this,” acknowledged Todd Yeary, the pastor at Douglas Memorial Community Church in Baltimore, Maryland. “We saw it as a part of a lifestyle that black people didn’t really want to talk about.”
But in September, Yeary will undergo a rapid HIV test in front of his entire 500-member congregation – joining hundreds of black pastors across the country who have embraced a public health campaign designed by the National Association for the Advancement of Colored People (NAACP).
Last week, the NAACP, a civil rights organisation, published 82 pages of information about the disease and strategies for addressing it from the pulpit, titled “The Black Church and HIV: The Social Justice Imperative”.
The pamphlets frame HIV/AIDS as an issue of equality and justice, and tackle topics that have been difficult for religious communities to confront – like homosexuality.
“Martin Luther King said, ‘There comes a time where silence is betrayal’,” reads the introduction. “For too long, the Black Church has been silent about HIV/AIDS. That is unforgivable and it has to change.”
There are other changes in the air as the International AIDS Conference approaches.
This week, for the first time ever, the Food and Drug Administration approved an HIV/AIDS prevention pill, Truvada, marketed by Gilead Sciences. In clinic trials, the drug reduced infection by 75 per cent in heterosexual couples where one partner is infected and the other is not.
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“We know how to stop this epidemic at this point. Two years ago, we had no idea – right now we know exactly how,” said Robert Grant, MD, MPH, at the University of California San Francisco, who lead the Truvada study.
Grant, who will attend the conference, called the rate of HIV/AIDS in Washington, DC an “embarrassment”, but said that the conference is a, “chance to show leadership where we haven’t in the past.”
“We have to start at home – we should show the world how to make this epidemic stop,” said Grant. “People will want to follow our lead.”
Twenty five thousand scientists, clinicians and community leaders are expected to attend the International AIDS Conference, which starts on Sunday evening. Addresses will be given by a long list of dignitaries, including Secretary of State Hillary Clinton and the Burmese opposition leader, Aung San Suu Kyi.
This is the first time the conference will be held in the United States in two decades. Organisers boycotted the US after the Department of Health and Human Services introduced a travel ban prohibiting HIV-infected people from entering the country. The Obama administration lifted the ban in 2009.
For J’Mia Edwards, the AIDS conference is a once-in-a-lifetime opportunity to learn.
“When I tested positive, I felt like my parents and my community failed because they didn’t educate me,” she said. “I know a lot about it from living with it, but I don’t know the scientific side. I’m so excited to go to the sessions and see it from a doctor’s perspective.”