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Fighting to be heard: Youth AIDS activists struggle for a seat at the table

Young advocates are working hard in the fight against AIDS — and in their fight to be heard.
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A panel discussion in the Youth Pavilion at AIDS 2012, entitled "Young People Leading the Fight Against HIV/AIDS" (Emily Judem/GlobalPost)

WASHINGTON, DC — The extensive program for last week’s International AIDS Conference boasted renowned speakers, politicians, and established leaders in the fight against AIDS. Indeed, speeches by Secretary Clinton and former President Clinton were bookends to a week filled with expert panel discussions, sessions featuring Whoopi Goldberg and Elton John, and discussions with representatives from PEPFAR, the Global Fund, and UNAIDS. An AIDS-free generation became catch-phrase of the week.

But down an escalator, hidden in the back corner of the global village — an area of the conference center set up with booths for advocacy groups from around the world — a lesser-known constituency discussed its ideas about issues of treatment, prevention, and stigma.

These are the youth — the next generation of leaders in the fight against AIDS.

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VIDEO: Growing up with HIV

Christina Rodriguez, co-founder of SMART Youth, on what it's like not to know a life without HIV
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Christina Rodriguez, co-founder of SMART Youth (Tracy Jarrett/GlobalPost)
Christina Rodriguez, 20, was born HIV-positive and found out about her status at age five. In 2005, she and her older sister, who is HIV-negative, started SMART Youth—an offshoot of her mother’s nonprofit organization, SMART University—in order to educate young people about HIV/AIDS. At the International AIDS Conference, Rodriguez told GlobalPost about her experience growing up with HIV, her struggles with disclosure, and her suggestions for how to give young people more support.
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Conversations from AIDS 2012: Dr. Lisa Fitzpatrick on the AIDS fight in America

Dr. Lisa Fitzpatrick, who has about 100 HIV-positive patients, speaks about what should be happening in the AIDS fight in the US.
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Dr. Lisa Fitzpatrick at AIDS 2012 (John Donnelly/GlobalPost)

WASHINGTON, DC—Dr. Lisa Fitzpatrick is medical director of the infectious diseases care center at United Medical Center in Washington,D.C., and now has about 100 HIV-positive patients. From 2005 to 2007, she also was the Centers for Disease Control and Prevention chief of party for the Caribbean. She spoke at several events in and around the conference, including a showing of the PBS Frontline film Endgame: AIDS in Black America. She was featured in the film, wrestling with issues around stigma and disclosure with her patients. She spoke to John Donnelly about what should be happening in the AIDS fight in America.

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Analysis: For faith leaders, a new turn in AIDS fight

At a summit of faith groups during AIDS 2012, Saddleback Church called for an end to American groups building orphanages in Africa, a contrast to some churches' stance six years ago.
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Rick Warren, pastor at Saddleback Church, and Lois Quam, outgoing director of the US Global Health Initiative, at the summit of faith groups during AIDS 2012. (John Donnelly/GlobalPost)

WASHINGTON, DC—The International AIDS Conference was full of talk of hope and best practices, but no one was giving details on how to reach an “AIDS-free generation.” Still, this conference, like many before it, had several key moments when it was clear that the world of AIDS had changed.

One came at a summit of faith groups held across town from the conference, organized by Saddleback Church’s Rick and Kay Warren.

The message from the Warrens and others: We’re ready to play ball with everyone who wants to end AIDS.

“I don’t have to agree with everything you do to work with you,” Rick Warren told about 400 people who packed a dining hall at Georgetown University. He said he was looking for “co-belligerents,” people like Elton John, whom he talked with at a congressional briefing.

Said Warren, the best-selling author of The Purpose Driven Life: “I said to Elton John if you want to end AIDS, I’m on your side … I said if you are serious about it, and you want to take healthcare to every village in the world, you must go through the local church. Because it is the only thing that is in every village in the world.

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PrEP debate is reminiscent of the past

The debate around PrEP at AIDS 2012 might sound familiar to those who attended the international AIDS conference 12 years ago.
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Bottles of antiretroviral drug Truvada are shown at Jack's Pharmacy on November 23, 2010 in San Anselmo, California. (Justin Sullivan/AFP/Getty Images)

WASHINGTON, DC—During the 1996 International AIDS Conference in Vancouver, Dr. David Ho announced that HIV could be suppressed to undetectable levels if patients took a “cocktail” of anti-retroviral drugs.

Time Magazine named him “man of the year,” and according to Rolling Stone, he became the most famous AIDS scientist in the world.

But in the years that followed, ARV distribution was also met with criticism, said Mitchell Warren, director of AVAC, a non-profit that advocates for HIV prevention programs.

“People said we can’t do treatment,” Warren said. “Too expensive. Not feasible. No one’s going to take their pill. What about drug resistance?”
For those who have attended sessions about pre-exposure prophylaxis (PrEP) this week at the 2012 International AIDS conference, this might sound familiar.

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A pharmacy's role in the fight against AIDS

Walgreens and the CDC are working to increase pharmacists' involvement in the testing, treatment, and counseling of HIV-positive patients
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A worker passes out flyers for free HIV testing outside a Walgreens pharmacy in Times Square on June 27, 2012 in New York City. (Mario Tama/Getty Images)

WASHINGTON, DC— The US government is looking for new partners to fight HIV/AIDS around the country.

And it hopes it found a new one: Walgreens.

At the 19th International AIDS Conference, Health and Human Services Secretary Kathleen Sebelius announced that the Centers for Disease Control and Prevention (CDC) and Walgreens Pharmacy will launch a Medication Therapy Management model to improve health outcomes for those living with and affected by HIV. The pilot will run for two years, at 24 sites—12 in urban areas and 12 in rural areas.

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Conversations from AIDS 2012: USAID's Rajiv Shah on the AIDS fight

The administrator of USAID shares his perspectives on the fight against AIDS
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Dr. Rajiv Shah, administrator of USAID. (Tim Sloan/AFP/Getty Images)
WASHINGTON, DC—Dr. Rajiv Shah, the administrator of the United States Agency for International Development (USAID), is a central player in the US government’s AIDS fight. His agency, more than any other in the US government, guides aid programs in the developing world, working in 80 missions. But USAID also suffered a blow early this month when the administration announced that the Global Health Initiative (GHI) office was being closed. That ended the original vision of USAID being GHI’s home, which could have made Shah king of global health programs. Shah is an influential global voice on development, ranging from agriculture to child survival. GlobalPost’s John Donnelly and Charles M. Sennott spoke to Shah this week about his perspectives on the AIDS fight.
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VIDEO: Surviving TB and speaking out

TB is the leading killer of AIDS patients and affects millions of people, HIV-positive and negative, each year. Natalie Skipper, a survivor of multiple-drug resistant tuberculosis, tells her story.
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WASHINGTON, DC—When Natalie Skipper got sick after spending time in South Africa, no one could figure out what was wrong.

Over the next year, she was diagnosed with—and treated for—several illnesses, including Chron’s disease, ulcerative colitis, and pneumonia. At one point her doctor even told her they would need to remove her colon in order for her to recover. But all of these diagnoses were wrong.

Panels with titles like “HIV/TB collaborative activities,” and “cost-effective approaches to HIV and TB treatment” have speckled the schedule this week at AIDS 2012. That’s because worldwide, one in four AIDS deaths is caused by tuberculosis (TB). Spread through droplets released when an infected person coughs or sneezes, TB can be deadly. In fact, it’s the leading killer of people living with AIDS.

But TB isn’t always tied to HIV/AIDS. Only 12 percent of TB patients have HIV, which means that 88 percent do not, and Skipper, 34, is one of them.

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Conversations from AIDS 2012: Sen. Bill Frist on HIV work as 'currency for peace'

The Senate Majority Leader talks about the effects of voter confusion, Congressional partisanship on US health aid.
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Gabriel Jaramillo (L), general manager of Global Fund, and Senator Bill Frist, M.D., founder of Help Through Healing Hands, pose for a photo on July 23, 2012 in Washington, DC. (Paul Morigi/AFP/Getty Images)

WASHINGTON, DC — Former Senate Majority Leader Bill Frist, a Tennessee Republican and a practicing physician, doesn’t return to Washington much. But he came for three days of the International AIDS Conference to talk about the importance of winning bipartisan support for the President’s Emergency Plan for AIDS Relief (PEPFAR).

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Highlights from AIDS 2012: HIV and non-communicable diseases

VIDEO: Global Post's John Donnelly speaks at a session during AIDS 2012
VIDEO: GlobalPost's John Donnelly speaks to AIDS 2012 participants about non-communicable diseases (NCDs) and their link to HIV.
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