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
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
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
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
4. THE MEDIA
We 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
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comments 1 - 15 (of 31 total)
bettyforacure, , 2012-03-25 15:37:13
Please keep your negative comments to yourself!! I understand for some of you it has been a long and difficult battle, but there are genuine efforts being made by the scientific communities to find at least a 'functional cure' of some sort for those individuals that can access it. We must not give in to self-pity and defeat!! Instead let us pray and uplift the scientific community for moving forward with a possible resolution to this dreadful disease. I refuse to give up or in to this disease!
David McCombs, Toronto, 2012-01-25 23:52:27
Interesting article, but I was diagnosed in 1985 and have seen lots of hope that never happens. The ARVs are not always the gift we are told they are (I am dealing with liver failure right now because of Darunavir). Friends of mine back in the 80s always believed that if a vaccine ever came out, they would leave us Poz folk to just die off. I'm not sure that is not true. It is a nice dream, but I'm sure that I won't be here to see it. Thanks for the article though
legolas613, Nashville TN, 2011-12-02 03:36:18
It sure is a wonderful ambition. However, the reality is it will never happen with a heavy reliance on ARV's. A preventitive and currative vaccine is the only way to a true victory. The ARVs route is too dependent on behaviors & there are always going to be HIV+ persons who will (a) not know their own status, (b) lie to others about their status, (c) many with a barebacking fetish (like me) (d) will become "lost to follow-up" with their Dr. or (e) choose not take take or adhere to ARVs (like me)
jane, Everywhere, world, 2011-12-01 11:08:37
MM-1 created in 1988... today is 12-01-2011. side effect fever or 102 to 103. Tylenol side effect liver failure and which leads to hospitalization and lots of cases death. truvada issentress, novorir, etc side effects, diarea, vomiting, rashes, severe head achs, some allergic reactions etc, and the lost of control for you own life. As long as there is no cure you are out of control.
Jane, , 2011-12-01 11:01:13
They have been writing promising articals for almost a decade now. We want to see a cure not a change. How long does it take to break through plastic. 20yrs? 30yrs maybe? They can and will always offer only some brief artical about how that "may", be a cure insight. Who's sight is the question. Your not born yet children? Or is it their children? What about MM-1? How long has the government supressed this? I know the answer. They will give you radiation for cancer but no a cure for AIDS. SCINCE
Ce, Orlando, 2011-11-30 10:57:47
I will agree witht he rest. Big Pharma is making too much money which means that the elected officials are making just as much. Lets bring stem cell reasearch into the USA and I am betting we can cure manythigns. Yeah they do not want that cause they all go broke. It is capitalism at its best and worse depends on which end of the money your at. Me it is at it's worse . Folks wake up this is all going to as one person said go away whena new money making drug needs ot be to treat another virus!
michael, san francisco, 2011-11-30 10:10:41
Great article, lots of misguided hope. Sadly, it won't happen. Why? Because Pharma holds key patents required to identify and produce a cure for HIV. Further, Pharma is not interested in killing off their global cash cow. It's too profitable for them. If you really want to eraticate HIV you'll have to find a way to take the profit out of it for Pharma. The obvious solution is to kill off (which Congress, Medicare and ADAP Programs are now doing) those infected with HIV.
Sorry to burst it.
Elizabeth, Marlborough, 2011-11-30 09:19:42
As soon as the pharmaceutical companies find a more profitable disease, they may drop the cost of drug for HIV/AIDS, they will move their business elsewhere. However, it's a disappointment that so many live and research has been done with not a positive outcome for a cure. At least, they have found some cure certain cancer. I wonder if the pharmaceutical companies have put themselves on our shoes I am positive that the cure be available right away.
Cate, Peterborough ,canada, 2011-11-29 06:57:45
As long as pharmaceutical companies make money from HIV + AIDS there will be know cure. AIDS is a big business. I have been positive for 20 years and have taken all HIV drugs but one. I have laid in the hospital near death a few times. There are no silver bullets here. These statements of control and cure are not those of people living with this disease.
David, New York, 2011-11-27 10:20:15
Re Bone marrow transplant as a cure...
Not a realistic option! The procedure kills 1 in 3 patients within the first 100 days, and another 1 in 3 die of long term chronic side effects within 5 years. Would you gamble for a 33 percent chance of total cure vs. 66 percent death?
Rick, West palm beach, 2011-11-10 09:33:58
A great article. Thank You! There are so many institutions which help our cause. I have limited funds, but I want to contribute to finding a cure and a vaccine. To which of these institutions should concentrate my contributions? Does Poz.com have a list of recommended organizations to donate to?
josue, dallas Tx, 2011-11-08 21:08:39
Iam dont like this but until they get tired of make money inventing hundreds of pills maybe wee all get lucky and finale wee ear the CURE is ready because for all those politicians is more important make WAR with every country they decide to keep the business ongoing than make a real effort and end AIDS after 30 years dealing with it
AlexMerida, Merida, 2011-11-02 12:54:39
I totally agree with Rob Careman, but the question is how, wich proyect is closer to a real cure.
We can give money to speed up the research....
AlexMerida, Merida, 2011-11-01 13:08:07
Please, we go to do something
researcher are doing their part,
We have to leave the confort are where many people are (including me) and think that all of us Can meke the cure of HIV possible and soon, please.
In Tunez, Egypt, NY, Spain social networks have made history
Jonathan, New Haven, 2011-10-30 20:35:45
comments 1 - 15 (of 31 total)
we need to fund ADAP and get the 9000 people in the USA off the ARV waiting list. I agree, the battle will not be easy nor cheap, but it is necessary. I am 30, gay and recently HIV pos. We need policy change-sex education, availability of condoms, and education in general. However, I do not agree about increasing male circumcision. I am VERY against this. I am cut and will always be missing a vital part of my natural body that with proper hygiene, does NOT aid in transmitting HIV