New Approach to HIV Treatment Could Save Lives
New standards state that patients should be treated sooner.
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Alicia Keys is a hands-on type of celebrity philanthropist. She proved that (again) this week when she visited the United Medical Center’s HIV program in Washington, D.C. On Monday, the Grammy Award-winning singer met with women there to discuss their experiences with the virus, and the fear and stigma associated with the disease. Keys, who has also traveled to Africa and India to meet with women who have AIDS, is working with the Kaiser Family Foundation’s “Empowered” campaign. The effort, launched last month, aims to educate women about HIV and provide grants to community-based projects that will do the same. According to Kaiser, one in four of the 1.1 million people living with HIV in the U.S. are women. “Black women are disproportionately affected, making up for the majority of all new infections,” Keys said. “That’s a must-have conversation.” (Associated Press)
This is huge! Doctors announced on Sunday that a baby, born in rural Mississippi, has been cured of an H.I.V. infection for the first time EVER. This development could change the way infected newborns are treated and dramatically reduce the number of children living with the virus that causes AIDS around the world. The baby was treated aggressively with antiretroviral drugs about 30 hours after birth, which is something that is not usually done. “For pediatrics, this is our Timothy Brown,” said Dr. Deborah Persaud (pictured), associate professor at the Johns Hopkins Children’s Center and lead author of the report on the cured baby. “It’s proof of principle that we can cure H.I.V. infection if we can replicate [Brown’s] case.” (Timothy Brown, known as the Berlin patient, is the first person to have been cured of the H.I.V. infection. Read more about him here.) Persaud and other researchers spoke about the findings ahead of their presentation at Monday’s Conference on Retroviruses and Opportunistic Infections in Atlanta. (New York Times)
While the rest of the country is debating whether or not guns belong in public schools, the City of Philadelphia is adopting another form of protection.
With the spread of STDs among high schoolers reaching epidemic levels, the school system is install free condom dispensers in 22 area schools. The schools with the most STD cases will be receiving the dispensers. They will not be placed in plain view in the hallways. Instead they will be located in the nurse's office.
"We believe distributing condoms is part of our obligation to keep students healthy and to remain healthy," school district spokesman Fernando Gallard told ABC News. "The health department has described this as a continued epidemic of STDs among teenagers in Philadelphia."
In the past five years, 5 percent of Philadelphia's teenagers have tested positive for STDs including HIV.
White men and women get it. Latinos and Latinas get it. Even black women, who bear a disproportionate share of HIV infections, get it.
But young black gay men, based on the spike in HIV infections among them, apparently do not get it.
What is "it"? The message that HIV transmission isn’t one of Aesop’s fables or something as intangible as Jim Crow-era segregation may seem today. The message that HIV is real. There is risk. And there’s no cure, despite much lauded advances in treatment that have made the disease manageable.
That’s a consciousness that AIDS activists and some political leaders worry is nearly absent from the minds of young black gay men, who make up more than half of all new HIV infections annually, according to the latest figures released by the U.S. Centers for Disease Control and Prevention.
When the CDC first sounded the alarm about young black gay men and their high risk for the disease half a decade ago, Tony Ray was in his late teens. Today, the 26-year-old New York City-based AIDS activist says not much has changed about the hyper-masculine, anti-gay communities in which he and his peers live.
“Stigma is the biggest factor” contributing to the high burden of new HIV infection rates among young black men, says Ray, who is co-chair of the Campaign to End AIDS in Youth Council and a community activist for Housing Works, an organization fighting homelessness among those infected.
“If you have a society that says you have to be out and open, but doesn’t allow you to come out and get the affection [you] deserve, you are more likely to live in shame,” Ray says.
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Shame fosters a host of unhealthy behaviors among black men, Ray adds. He’s known his peers to seek discreet sexual encounters with men on “hook up” websites and, out of desperation, compromise their safety to attract other men who don’t “play safe” and are more likely to be HIV positive. And even among openly gay young black men, Ray says, conversations about condom use and HIV status don’t take place at the moment they should.
The emphasis on hyper-masculinity in the black community doesn’t help either. Young men understand very early on the status that comes with dominating and bedding women, even if they are having sex with other men, Ray says.
The spike in new HIV infections among this group seems to be a byproduct of shame, stigma and lack of effective sexual health education, most activists and sexual health experts agree.
The CDC estimates that 1.1 million people in the U.S. are HIV positive, with 50,000 newly infected each year and 1 in 4 occurring in people ages 13 through 24. In 2010, 1,000 young people were infected each month. Young black men who have sex with men (MSM) saw a 48 percent jump in new HIV infections from 2006 to 2009, according to CDC data.
With millions of dollars in government funding already going toward helping community groups test, prevent and educate high-risk demographics, some sexual health experts are beyond frustrated by the latest youth HIV statistics.
“I had to really kind of think about where this is coming from,” says Michele Luc, a sexual health and research professional at the Cornell University Cooperative Extension in New York City who has worked in the AIDS prevention community for nearly two decades.
“[Young people] are bombarded with information, so much that they feel like, ‘We get it! We get it,” Luc says. “[Young people] don’t have a face to attach to the disease like there was in the late 1980s and through the 1990s. For me, as a black female, when Eazy-E died, when Magic Johnson came out [as HIV positive], these were people [my generation] knew and loved.”
[ALSO READ: To Be Young, HIV+ and Black]
Luc compares young people’s understanding of the HIV pandemic to their understanding of how blatant racism and racial violence shaped daily life for African Americans half a century ago.
“They’ll say, ‘What? People are still getting AIDS?’ as though it was as foreign to them as burning crosses and hooded Ku Klux Klan members,” Luc says, adding that some of the messages to “scare young people straight” on HIV prevention have been flawed.
Luc says that while treatment methods have advanced, she believes young people should better understand the full trajectory of the disease, and not only that pills can extend their lives. Also, much of the government funded education curricula doesn’t employ language and terms that are inclusive of gays, lesbians, transgendered individuals and those questioning their sexual identity, she says.
On Capitol Hill, members of Congress aren’t hearing enough about it from their constituents to collectively do anything meaningful about the HIV infection rates for young black men. Rep. Barbara Lee, a Democrat representing Oakland, Calif, where African Americans made up 72 percent of all new cases of HIV in 2007, is issuing a challenge to the black community.
“We need to hear from African Americans,” Lee says. “It deeply concerns me…I say, it’s a state of emergency.”
Lee says that while she often hears from local activists in her district, she believes too few House members are feeling the same fire from other hard-hit constituencies. She’s been on the forefront of HIV prevention initiatives, having drafted and introduced legislation that, among several key aims, seeks to end the criminalization in some areas of people who knowingly or unknowingly transmit HIV to another, a reality that experts and activists say scares many who are infected from coming forward for testing at all.
“[The high rate of new infections among young black gay men] is an issue that is on the table,” Lee says. “But we haven’t had the push from the outside. Those who raise the loudest noise, get the response.”
Ray believes that response should come from his peers. Although he trains local activists, whom he describes as “amazing” and “motivated in the fight,” even they are not enough.
“My motto has always been to be the change you want to see in your community,” Ray says. The problem is “no one wants to be that change.”
Ray and others say young black men will have to think differently and act with a sense of urgency in order to move the needle and reduce their risk.
Right now, however, they don’t get it.
After then 19-year-old LaQwanna Finkley complained about a headache for the umpteenth time, her mother sent her to the clinic. It was a visit that would change everything.
“The doctor gave me a full physical and blood work, and she asked if I wanted to take an HIV test,” the Bronx, New York, native says. “I said, ‘Sure, no problem.’ A week later, she told me that everything came back negative, except for my HIV test.”
Finkley’s response to the news doesn’t at all surprise those who know the upbeat, pragmatic young woman: “Okay. What do I have to do next?”
Finkley, born legally blind and often bullied as a child, viewed the diagnosis as just another challenge to overcome. “I knew that this was a task that God had for me; that He needed me to do something for Him. Even if I am scared, I’m still gonna use this situation to glorify God,” she explains.
She believes she contracted the disease from unprotected sex with a philandering ex-boyfriend, but her diagnosis hasn’t stopped her from living her life. Five years later, the relatively healthy 24-year-old is in a loving relationship with the man she was dating when she found out her status (he’s HIV-negative and gets tested every six months). Finkley spends her days working with at-risk teens in New York City’s Young Adult Internship Program, where her straight-talking tendencies are put to great use educating a rotating class of teens to the realities of the disease. “I tell them that some people don’t get a second chance; my second chance is for you not to become positive,” she says.
To say it’s necessary work is an understatement; young black men and women are contracting HIV at an unprecedented rate. According to the Centers for Disease, Control and Prevention, 26 percent of all new HIV infections occur in youth ages 13 to 24. But while blacks ages 13 to 19 make up just 15 percent of the teen population, they represent 60 percent of new teenage HIV infections. And because the risk of contracting the disease is increased in communities where a higher percentage of people already have it, black teens are more likely to join the ranks of the infected.
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Why are the numbers so heartbreakingly high? Poverty, for one. A 2010 CDC study found that “poverty is the single most important demographic factor associated with HIV infection among inner-city heterosexuals.” Nationwide, 35 percent of African Americans are living at or below the poverty threshold, which the Census Bureau defines as $22,811 for a family of four. Accordingly, the president’s National HIV/AIDS Strategy focuses resources in socioeconomically depressed areas.
“As a nation, we must work to eradicate poverty. Housing insecurity, homelessness, high unemployment, violence, illiteracy, high rates of incarceration—all by-products of poverty—contribute to higher rates of HIV/AIDS and other epidemics in our communities,” says C. Virginia Fields, president and CEO of the National Black Leadership Commission on AIDS (NBLCA). “Women and children are especially vulnerable to poverty in America. A renewed war on poverty will greatly enhance the nation’s disease prevention and health promotion efforts.”
Education is another important factor, says Angel Brown, senior program manager for GLBTQ health and rights at Advocates for Youth. “There is often a lack of information and resources given to our youth. We all know racism and its impact on the African American community is real,” she says. “Black teens, like all teens, need education and resources within their communities; supportive families and communities; and skills-building to help them make responsible decisions regarding their sexual and reproductive health. They also need comprehensive sex education within their schools.”
[ALSO READ: Why Abstinence Only Ed Hurts Black Girls]
Prevailing attitudes in the often socially conservative black community also play a role. “HIV stigma and homophobia continue to plague communities of color and are the driving forces for youth not getting tested for HIV, or testing late,” says Lissette Marrero, deputy director of the Adolescent AIDS Program. “They also contribute to the lack of condom use. If you can’t say you are gay in your community, you will not be able to negotiate condom use.”
The fallout of that stigma isn’t lost on Lawrence Stallworth II, who contracted HIV from unprotected sex when he was just 17. As the community education and outreach coordinator at the AIDS Taskforce of Greater Cleveland, he’s well aware of the barriers facing black men who have sex with men (MSM), a group who represent 54 percent of new HIV infections among all young MSM.
“The black community doesn’t talk about homosexuality. But it needs to be something we’re able to have a conversation about, so we can make smart, adult decisions and not rash, emotional ones,” says Stallworth, now 21. “If we don’t do something now, we’re pretty much being the harbinger of our own genocide. Ignorance is death in this case.”
Stallworth found out about his status after he spent two weeks on the couch, too sick to keep down food. When he went to the hospital, he was rehydrated and sent home. It was at his follow-up appointment that his pediatrician broke the news to him. “I was shocked, and I was scared and I was hurt, all at once,” he remembers. “But then I decided that I could either let this beat me, or I could overcome it and help other people.”
An activist with Advocates for Youth, Stallworth has appeared before the President’s Advisory Council on HIV and AIDS, and he spoke on the floor of the United Nations during a briefing on World AIDS Day last year. “I get to go to work and say every day that I’m helping people,” he says. “It’s a wonderful thing to be able to take your own tragedy and turn it into something that educates people, and it’s a fantastic feeling to be so young and doing my part to help society.”
[ALSO READ: Young Gay Black Men Most at Risk for HIV]
His is an attitude that can go a long way toward addressing the issues that lie behind the statistics. It will take both personal and community responsibility to lower infection rates. The first step is to educate yourself on the disease and its transmission. Then get tested. The CDC recommends routine screening, and testing any time you get tested for other sexually transmitted infections; many sites offer free, confidential testing. Those at higher risk, including MSM and anyone having sex with more than one person (or whose partner is not monogamous) should be tested annually. If you are positive, seek immediate care—when you have your viral load under control, it’s better for the entire community, because it can reduce the chances of transmission.
Then take responsibility for at least one young person. Whether it’s your child, little brother, niece or mentee. Have the hard conversation about his or her risk for this disease. Share the numbers, answer any questions about having safer sex, encourage him or her to get tested, and support him or her if help is needed.
Then look to the greater community. On the policy side, the NBLCA is advocating for the National Black Clergy for the Elimination of HIV/AIDS Act, which U.S. Rep. Charles B. Rangel (D-NY) and U.S. Sen. Kirsten E. Gillibrand (D-NY) plan to reintroduce in January. If passed, the legislation could go a long way toward improving the situation. It would authorize the Office of Minority Health of the Department of Health and Human Services to make grants to public health agencies and faith-based organizations with the specific purpose of providing HIV/AIDS prevention, testing, treatment and care for African Americans; provide services to at-risk and HIV+ black youth, particularly those who are homeless or in detention centers or foster care; and require the CDC to dedicate more resources to risk-prevention education for black youth, women and MSM. Tell your members of Congress that you support this act.
“Your voice can and will make a difference in how policies and funds affect your community. As a former elected official, I cannot stress the importance of this enough!” Fields says.
NBLCA is also holding community town hall meetings around the country to develop national and local strategies to address the health disparities surrounding black infection rates. Attend one in your neighborhood.
Advocates for Youth is pushing the federal government to make April 10 National Youth HIV & Awareness Day; the hope is to call more attention (and resources) to how this epidemic is affecting our youth. Sign the petition to ask President Barack Obama, Congress and the U.S. Department of Health and Human Services to make it so.
In the end, like so many of the issues that loom large in the black community, this epidemic comes down to taking personal responsibility.
Perhaps Brown says it best: “You don’t have to be a doctor or public health official to make a difference. As a community, we have a responsibility to our young people. If every adult committed themselves to ensuring young people’s right to lead healthy lives and worked to promote their overall well being, we would see a drastic decrease in negative sexual health outcomes.”