October/November #175 : R.I.P. HIV - by Regan Hofmann

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Table of Contents



From the Editor

Retiring the Ribbon


Letters- October/November 2011


High-Impact Prevention

What You Need to Know

Health Care Should Be a Human Right—for All

Too Few Pharma Companies in the Patent Pool

Legislation Proposed to End Criminal HIV Laws

AIDS Is Not an "Automatic Death Sentence"

Geckos Don’t Cure AIDS

We Hear You

The PrEP Debate

What Matters to You

Getting HIV Care Without Getting Deported

Treatment News

A Peek Into the Pipeline

Savvy Survival Strategy

Going Norvir-Free?

Cure Watch

Listen Up

Oh Baby!

Make Some Bones About It

Comfort Zone

Waiting to Inhale

POZ Heroes

Defying Gravity

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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October / November 2011


by Regan Hofmann


We need to mobilize a coordinated, effective, relentless advocacy effort that puts bipartisan pressure on the White House and local and state officials. There’s a policy wonk expression known as “grasstops,” which means, loosely, “from the grassroots to the top of the decision-making pyramid.” We need to launch a kickass, grasstops AIDS advocacy effort.

It’s important to ask the president to take a global leadership role on HIV/AIDS, and to solicit Congressional support, but they can’t do it alone. The HIV/AIDS community needs to make a lot more noise. The squeaky wheel always gets the grease, and as we head into “Budgetgeddon” (our name for the end of federal funding as we know it), we have serious work cut out for us.

We can’t be afraid to try to change the minds of our staunchest opponents. We need to pile into the offices of those most averse to discussing the issue. And stay there until they talk with us. Someone’s got to get to Speaker John Boehner and Congressman Eric Cantor and enlighten them on AIDS. We must reach out beyond the usual suspects of our friends and members on the appropriations committees. Those people are important. But we need new friends, too.

In order to maintain old friends and make new ones on both the state and federal level, many of us need to call them frequently, share our personal stories, get mad when they let us down and thank them when they don’t. We also need to be singing the same song. More streamlined and better coordinated advocacy messages are critical. We also need to put price tags on our “asks” and be able to substantiate savings where possible.

We need to ask famous, rich, powerful people to lend us their access and leverage in order to get to members of Congress who may not want to hear from us. Once, the people fighting for HIV/AIDS funding on Capitol Hill ran Wall Street, Hollywood, Broadway, Seventh Avenue and the global media. Tragically, many of them have passed away.

We need to engage new heroes and heroines, including people with ties to Republicans and Tea Party Republicans. We also need to ask for the support of the influential and powerful LGBT men and women in the world to help us get deep inside Capitol Hill again. HIV continues to disproportionately affect LGBT people, and HIV-related discrimination intersects with LGBT discrimination. The HIV and LGBT camps must align again to fight together for human rights and push the notion that health care is a human right.

We need to come together with other disenfranchised groups and threaten to swing the vote. The most disenfranchised often have the least political power. But we do have the power to vote. The HIV community needs to make it clear that if money for AIDS disappears, so does our vote. And we all must be registered. A group of 1.2 million does not a swing vote make, but if we band together with our disenfranchised peers (the unemployed, the elderly and others who depend on Medicaid and Medicare), we have a shot at rocking the vote. Bound together with others, we all stand a better chance of survival.

Health care reform is the most likely way for our country to be able to address the AIDS epidemic stateside (and the health concerns of other disenfranchised people); we must ensure that the Affordable Care Act is implemented. To do that, we must help our current president get re-elected. This is part of what it will take for the president to have the fortitude to defend health care budgets: millions of angry Americans who will unseat him if he fails to protect our lives.

We need to get angry again and let it show. Those who can access care have been lulled into a false sense of security by a flush economy and many effective treatment options. But those days are gone. Make no mistake, we are now fighting for our lives all over again. I know that so many of us are tired from waging a long battle. But we need to get furious that tens of millions of our brothers and sisters are at risk for illness and death even as we swallow lifesaving pills. We also should realize that all of us currently in care are not far from being without care. We need fear and anger over the injustice of health inequities to fuel our fight again. We need more theater, more outrage. More fake blood, more die-ins, more faux coffins. Or else those things will come our way in their all-too-real forms. When an advocacy group says “jump” we need to do so. Phone calls to Capitol Hill are free. There is no reason tens of thousands of us can’t make them, and make our representatives hear our fury.

Those of us with advocacy experience need to help others around the world launch advocacy efforts in their nations. If we’re ever to get the G8 and G20 countries on board, there needs to be more activism in the nations most capable of and likely to contribute to the global AIDS fight. Those of us who’ve been doing this work for a long time must teach those new to the fight—and we must fight on behalf of those unable to advocate for themselves.


Lady GagaWe need to refocus attention on HIV/AIDS and make it a critical cause again. In 2011, AIDS lost one of its greatest heroines with the passing of Dame Elizabeth Taylor. We’ve lost so many over the years. Thankfully, we still have amazingly stalwart and remarkably generous friends like Bono, Sir Elton John, Magic Johnson, Annie Lennox and others.

For AIDS to stay on the cusp of collective social consciousness, we need to bring it back into the spotlight. And to do that we need the familiar talent to make a high-profile comeback and new talent to take the AIDS stage. Maybe Taylor Swift can get on board. Usher. Justin Bieber. Selena Gomez. The casts of Glee, Vampire Diaries and True Blood.

Then there’s always the Holy Grail of Gaga. Can you imagine what it would do for AIDS awareness if Lady Gaga tweeted regularly about the virus to her Little Monsters? All 10 million of them.

We need to encourage leaders in the media, including social media, to hop on the AIDS bandwagon, too. We need to educate a whole new generation of reporters and producers about both the importance of mainstream coverage of HIV/AIDS and how to do it sensitively, accurately and compellingly. We can help the media by building relationships with them, sharing our lives and working with them on local, national and global stories. Quick, someone pitch a Current TV show on HIV/AIDS! And let’s get an HIV-focused show on OWN (the Oprah Winfrey Network). Anderson Cooper, can you please talk about AIDS a whole lot more? Maybe Google will use its logo to save lives. How about a little Google AIDS love on National HIV Testing Day or World AIDS Day? We need to create AIDS awareness, testing and treatment campaigns for YouTube and Facebook that go as thoroughly viral as HIV itself. Let’s leverage the new forms of media to their fullest potential and put frank, accurate information about how to have safe sex onto Tumblr, dating and porn sites to spread the word, not the virus. And can we please use iPads as mobile, handheld med schools? Let’s create a whole series of continuing education about HIV prevention, testing and care and broadcast it to the world’s health care workers via tablets. And let’s galvanize a whole new generation of youthful activists to join the fight.

We need to re-engage the worlds of art, music, theater, fashion and design. Looking at galleries, auction houses, lyrics, MTV, theater and magazines today, one wonders if AIDS is out of fashion.

When Larry Kramer accepted his Tony Award earlier this year for Best Broadway Revival for The Normal Heart, the national and international spotlights were, for a brief moment, again on AIDS. We must ask our talented, stylish friends to help us keep it there. Quick, someone call Marc Jacobs, Tim Gunn and Ms. Wintour. AIDS must be in vogue again, literally and figuratively!

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Search: Washington DC, Thomas Frieden, U.S. Centers for Disease Control and Prevention, CDC, HPTN 052, PEP, PrEP, pre-exposure prophylaxis, post-exposure prophylaxis, Bill Gates, Anthony Fauci, National Institutes of Health, National Institute of Allergy and Infectious Diseases, United Nations, Medicaid, Medicare, stigma, discrimination, homophobia, criminalization, deportation, President?s Emergency Plan for AIDS Relief, PEPFAR, Barack Obama, Office of National AIDS Policy, President's Advisory Council on HIV/AIDS, PACHA, Michelle Obama, Global Health Initiative, GHI, UNAIDS, Affordable Care Act, AIDS Drug Assistance Program, ADAP, Ryan White CARE Act

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  comments 30 - 31 (of 31 total)     << < previous

Betsy Yung, Burbank, CA, 2011-09-26 12:17:25
I can't help but wonder if a shift in thinking might ultimately occur if all HIV positive people would decide to come out of the shadows and disclose... particularly those who are public figures. I know it's just a wild dream... if only we could just feel normalized and not stigmatized... if everyone would test and get treated. I imagine that with all the weapons we currently have... AIDS could die with my generation. Sadly, a cure for me, in my lifetime, is unlikely.

carol durante, fredericksburg, va, 2011-09-26 08:56:59
This is wonderful news and I feel a sense of obligation to move this forward. I hope everyone feels a sense of responsibility to do whatever is needed to end AIDS.

comments 30 - 31 (of 31 total)     << < previous

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