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Doing it for the Dead

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Today, December 1, is World AIDS Day 2012. It's always a bittersweet occasion. Each time I mark another World AIDS Day, I'm so happy to still be here and am deeply grateful for the progress that's been made in the last year. But it's a tough day as we remember all we've lost to AIDS and contemplate how our own lives have been impacted.

I deal with loss in the past by doing everything I can in the present to make the future as bright as can be. 

This year, the future looks more hopeful for people at risk for and living with HIV than ever. Science shows that an AIDS-free generation is viable with the tools and knowledge in our hands and heads today. And political and global leaders are rallying around the notion of the end of AIDS in a way that makes the dream of an AIDS-free world a real possibility. The hunt for the cure is heating up, the pursuit of vaccines rages on and there is new HIV-savvy leadership in key places like the World Bank (Jim Kim!) and the Global Fund to Fight AIDS, Tuberculosis and Malaria (Mark Dybul!)--two key organizations capable of getting prevention and treatment to many more in need. UNAIDS continues to push for zero new infections, zero discrimination and zero AIDS-related deaths. Michel Sidibe, UNAIDS' executive director, continues to do a superb job articulating the extraordinary chance we have to stave off mass suffering and death if only we agree to a more equitable distribution of resources to people threatened by HIV. The 2012 UNAIDS report documents that more nations that ever are contributing to the battle against AIDS. And with Nkosazana Dlamini-Zuma (an experienced diplomat who is the former wife of South African President Jacob Zuma) at the helm of the African Union, there is even more hope for greater country engagement--especially when science and real-world case studies show that investing in the end of AIDS yields notable dividends. 

And, finally, on Thursday, Secretary of State Hillary Rodham Clinton unveiled the "President's Emergency Plan for AIDS Relief (PEPFAR) Blueprint: Creating an AIDS-free Generation." I've written about it in detail in a piece that will soon be posted on the Huffington Post so I'll just touch briefly on it here. It's a tremendously good roadmap. It's proof positive that we can end AIDS, offers modeling for how it's being done in four nations and, by removing the question of whether we can control viral spread, heightens the moral imperative for those with the power to end AIDS to do so. Its implementation will require the support of many nations (including ours) as well as that of the multilateral funds like the Global Fund and World Bank. Securing the financial resources to achieve an AIDS-free generation will require some serious advocacy around the world. But I believe the existence of the Blueprint will be a helpful tool for that advocacy.

It's no small thing for Secretary Clinton to endorse the Blueprint. Her support suggests to me that she believes so thoroughly in the world's ability to end AIDS that she wants to leave--as part of her legacy at the State Department--evidence that AIDS can be beaten so that the next set of leaders there feel the pressure to continue the U.S. commitment to the end of AIDS. There are many sticky, tricky, expensive global challenges. But when someone maps a way to solve them, it makes it more problematic for them to remain unsolved. "We didn't know how" is an excuse no one can use anymore for failing to end AIDS. The PEPFAR Blueprint is inherently invaluable unless it is implemented. But the fact that it exists and is endorsed by Secretary Clinton and the White House increases the chances it may serve as a user's manual for the AIDS endgame.

The PEPFAR Blueprint compellingly demonstrates how front-loaded strategic investments based on sound science can achieve an AIDS-free generation in the not-so-distant-future. And that such investments will result in significant savings--in terms of both dollars and lives--in days to come. 

Here is Secretary Clinton, at the unveiling of the PEPFAR Blueprint:

 
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Given that this World AIDS Day marks a moment of great opportunity to seize the ability we have to end AIDS, I thought I'd offer up a Whitman's Sampler of sorts of 12 tangible things I feel can help free the word from HIV (there are 12 because it's World AIDS Day 2012). They are listed in no particular order. Please add your own suggestions in the comments section!

1. Call for bi-partisan support of H.R. 6187 "The Cure for AIDS Act 
While better prevention and more access to care for more people will lead to an AIDS-free generation, an AIDS-free world is impossible without a cure. This bill would fund research for and development of an AIDS cure by establishing a $100 million research program within the Congressionally Directed Medical Research Program managed by the Department of Defense. The department would work closely with academic researchers and nonprofit orgs to create a consortium of scientists and advocates to review cure research proposals. The bill was dropped by Congressman Jim Himes (D-CT) and co-sponsored by Congresswoman Barbara Lee (D-CA). 

ACTION: Help push to get the remaining two co-chairs of the Congressional HIV/AIDS Caucus--Congressman Jim McDermott (D-WA) and Congressman Trent Franks (R-AZ)--on the bill as co-sponsors. Tweet: "Congressmen @RepJimMcDermott & @RepTrentFranks co-sponsor "The Cure for AIDS Act" HR 6187 to bring #endofaids." And email and call their offices! (And the offices of your representatives to ask them to join, too.) To find contact info for members of Congress: click here. McDermott's DC office # is 202.225.3106. Franks DC office # is 202.225.4576. Ending AIDS requires bipartisan support. And, a cure.

2. Thank those leading the fight. 
As important as it is to push and advocate for change with those who oppose us, it's equally important to offer encouragement and thanks to those working hard to save our lives.

ACTION: Read "The POZ 100: Accelerating the End of AIDS." Then, pick a few of the astounding people on the list and let them know via email, Twitter or Facebook how much you appreciate their efforts. Heck, why not send them a holiday card? 

3. Support the removal of international travel bans for people with HIV/AIDS.  
The U.S. lifted their ban recently but 45 nations still impose restrictions on people with HIV desiring admission to their country. GBC Health, in collaboration with UNAIDS, secured the signatures of 45 CEOs--one for each country with a ban--to show solidarity about the removal of travel restrictions for people with HIV/AIDS.

ACTION: Read the Op-Ed by Chip Bergh, President and CEO of Levi Strauss & Co and Kenneth Cole, CEO of Kenneth Cole Productions. Then, send a tweet to @GBCHealth and @UNAIDS expressing your appreciation of the CEOs' willingness to stand up for the human rights of people with HIV. GBC Health will ensure the CEOs see your tweets!

4. Become a black belt on the facts
Educating yourself is an empowering and necessary part of being an effective member of the fight against AIDS.

ACTION: Digest these four critical reports. They are required reading for anyone serious about stopping viral spread. Get in a comfy chair--because some are long. All are worthy of your time.

5. Join the next generation of cure hunters.
Gen-whatever-they-call-young-people-now is an essential element of bringing the firepower we need to stop AIDS. As amfAR board member, I am particularly impressed with the zesty leaders of generationCure--a new endeavor designed to engage new people in the permanent medical solutions to HIV infection, a.k.a., da cure. 

ACTION: Support young people focused on finding a cure by getting involved in amfAR's "generationCure" initiative.

6. Learn how to apply the lessons of early AIDS actvism to today.
The lessons of past successes are invaluable for today's challenges. The activists who helped save the lives of all living with HIV today got many things right. As we push for the end of AIDS, and fight for other types of related social change, it's helpful to study what has worked so we're even better at fighting today.

ACTION: Watch the award-winning documentary "How to Survive a Plague" (hanky alert!) then check out the film's guide to becoming involved in social change and join the "How to Survive a Plague" Google+ Hangout Monday, Dec. 3 at 8 p.m. EST. The hangout includes filmmaker David France, legendary activist and AIDSmeds founder Peter Staley, Angelique Kidjo and others! I am hosting. Tweet us some juicy questions! And join us in studio if you're in NYC.

7. Be inspired by great minds.
There are too many wonderful blogs on AIDS on this World AIDS Day to highlight them all...but these are two of my favorites from two really heavy hitters.

ACTION: Read:

8. Get tested for HIV.
It's essential for each of us to know our status and to continue to check it. Let's make knowing--and sharing--our status a matter of personal pride. I am not ashamed to have HIV or admit that I do. When more of us know our status and feel comfortable making testing a routine part of conversations and healthcare, we'll have a better shot at ending AIDS.

ACTION: Get yourself tested or if you already know your current HIV status, take a friend. Find out where and how to get an AIDS test in the U.S. here.

9. Call on President Obama and Congress to fund the end of AIDS.
It's not up to America alone to end AIDS. Other nations must get more skin in the AIDS game. But since what America chooses to do about its commitment to funding AIDS heavily influences global giving, we need to encourage our leadership to step up, not step down, foreign aid for AIDS. And, impress upon them that we should also lead by example at home. 750,000 Americans with HIV not in care does not engender great confidence that we know how to end AIDS. The Affordable Care Act will help resolve that so we must support its implementation and pressure state leadership to adopt Medicaid expansion.

ACTION: Read the "PEPFAR Blueprint: Creating an AIDS-free Generation." Then, ask our nation's leaders to do their part to fund its implementation. Tweet: ".@BarackObama fund the @PEPFAR Blueprint. Increase foreign aid in FY2013/2014." Don't forget to start your tweet with a "." before the "@" symbol. Send the same thing to your representatives in Congress. While we're at it, let's email every member of Congress a copy of the PEPFAR Blueprint. And a note documenting how many of their constituents are struggling to access care for HIV on American shores.

10. Support the Global Fund to Fight AIDS, Tuberculosis and Malaria.
As part of encouraging more widespread participation in the global pandemic, we must target the leaders of nations capable of contributing more to the end of AIDS to do so. @BillGates tweeted today "One of the best ways to support the fight against #AIDS is to donate to @GlobalFundNews." Indeed. 

ACTION: As we head into the next 3-year replenishment cycle for the Global Fund, we must lobby hard to have more nations support The Global Fund. Check out the Global Fund's "Big Push" campaign involving Arianna Huffington, Bono, President Clinton and Tony Blair. Send a link to "Big Push" to Congress and tweet about it using #bigpush. And innovative financial solutions like the "financial transaction tax" are gathering steam around the world as mechanisms for generating more funding from the private sector to protect global health. So get behind creative streams of new money, too.

11. Ask the World Bank to refocus on ending AIDS
The World Bank focuses on righting a host of ills. Since so much attention has been given to HIV/AIDS by others, the World Bank of late has focused less on the AIDS pandemic. But its new leader, Jim Kim, has a long history of battling HIV and is a member of the President's Advisory Council on HIV/AIDS (PACHA). Here's hoping he re-engages the fund to help accelerate the end of AIDS.

ACTION: Read World Bank head Jim Kim's thoughts on the PEPFAR Blueprint to reach an AIDS-free generation. Then, tweet him @WorldBank and ask him to redouble their efforts. While you're at it, ask him (and the whole of PACHA) to encourage @BarackObama to make helping ending AIDS--at home and abroad--a second-term priority. 

12. Be a part of the AIDS EndGame.
In Shakespearean drama, ACT V is the final act--the act when resolution and redemption occur. In terms of the HIV pandemic, ACT V is how we help bring the final curtain down on AIDS. ACT V: The End of AIDS (a new org run by Leigh Blake of Red Hot and Keep A Child Alive fame and global activist extraordinaire Dr. Paul Zeitz) is launching a massive social engagement campaign called EndGame you will not want to miss (trust me on this one, I'm working with them). 

ACTION: Go to ACT V to be kept in the loop. And text "actfive" to 80077 to donate to the AIDS EndGame. Your donations will help support The Global Fund to Fight AIDS, Tuberculosis and Malaria.

The bottom line? We can, and therefore must, end AIDS. With your help, we will get sooner to a World AIDS Day on which we can celebrate an AIDS-free generation and, ultimately, the end of AIDS.

I always reflect on this day how important the mission of ending AIDS is to me. I also allow myself to acknowledge how emotionally hard and tiring it can sometimes be. But two things keep me going. One is a notion that was shared with me two years ago, when I was paralyzed with nerves thinking of having to speak in front of 35,000 people in Vienna at the Life Ball. As I stood shaking backstage, my dear friend Avram Finkelstein said to me: "Do it for the dead." Somehow, concentrating on the fact that I am still lucky enough to be here helped me galvanize enough courage to walk out on that stage. 

The other thing that fuels my fight is the thought that the only way we can ever counterbalance the pain of past losses is to get things right going forward. And to die trying.

Thank you to all of you for all you do for people with HIV. And thanks to so many of you for your personal support over the years. I just realized that this year, I want to add a third driver to my impetus: doing it for the living. Because that captures the essence of where we are today. Refusing to give up now means we have the chance to spare tens of millions of lives. And who among us wouldn't seize that chance?

Regan Hofmann is a global health consultant and an activist. Her website is reganhofmann.com. On Twitter: @reganhofmann. On Facebook: ReganHofmann9. She was formerly the Editor-in-Chief of POZ Magazine and poz.com.

She is the author of "I Have Something To Tell You," published by Simon and Schuster.

An Exciting New Chapter!

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Today's date--10.11.12--is a perfect one for the news I'm about to share. As I sat with my tea this morning watching the sunrise, my last one as editor-in-chief of POZ and poz.com, I felt a touch of sadness, combined with a mounting sense of excitement, the kind I feel whenever I count upward in numbers...ten, eleven, twelve, and onward we go. 


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Today, I share with you that after nearly seven years at the editorial helm of Smart + Strong, I've decided to step down as S+S's editorial director and editor-in-chief of POZ magazine and poz.com. 

While I have loved my time at POZ, I have determined it's time for me to work closer to the front lines of the pandemic. I am eager to be involved more directly in the development and implementation of the solutions needed to stop the spread of HIV around the world. Which is why I have decided to work as a consultant focused on strategy, communications and change in the field of global health. 

I remain deeply committed to doing what I can to help usher in what science tells us is possible: an AIDS-free generation and, perhaps, even the end of the pandemic itself. 

My good friend and longtime colleague Oriol Gutierrez will be POZ's new editor-in-chief effective immediately. He is well qualified for this role and I know POZ will continue to thrive under his leadership. I look forward to remaining an avid reader! 

I will continue to blog here on poz.com and you can follow my future work and adventures on reganhofmann.com (the site will be fully functional soon and I will blog to let you know when it's up and running). My Twitter handle is @reganhofmann and on Facebook, I'm: "reganhofmann9." 

So many of you have been such wonderful partners to me in my years at POZ. I am deeply grateful for the support, wisdom and friendship you offered me. For those of you engaged formally in the fight, your commitment to protecting the rights, health and dignity of people with HIV has profoundly inspired me. And all of you who fight as individuals against the virus have had an equally inspirational impact on my life. 

Though this change concludes our chapter together at POZ, I look forward to staying in close touch and working with many of you in other iterations. 

So, this is not so much a goodbye as a hello from another perspective. I will go forward armed with the strength and knowledge I gathered first as a reader of POZ and eventually, as its editor. 

My years at POZ have been some of the richest in my life and all of the people associated with the brand have helped me journey to a much brighter, healthier place. Once, I was a terrified, newly diagnosed woman living in isolation reading POZ by flashlight in my bedroom at night because I didn't want anyone to know I had HIV. Today, I can stand in front of Congress, leaders of this nation at the White House, a national television audience or tens of thousands of people in a public square in the middle of Vienna (as I did at the Life Ball) and say, without fear or shame that I am living with HIV. 

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When I first publicly outed myself on the cover of POZ in April 2006, my picture ran above the words "I am no longer afraid to say I have HIV." At the time, that statement was only partially true. Today, thanks to the fortifying effect of the POZ family that now extends around the globe, I am truly no longer afraid to say I have HIV. 

It has been a privilege and an honor to be your editor for all these years. And I go onward and, hopefully upward, fueled by the incredible spirit of the collective POZ family. 

HIV is a terrible disease but it has afforded me the good fortune of meeting some of the finest people I have ever known. I have been inspired, humbled and amazed every day at POZ. I will always cherish the memories we have created together. And I look forward to creating new ones with many of you in new ways in days to come. 

With gratitude, warm regards and love, 
Regan

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Enlist In the End of AIDS

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Recent scientific advances have proved that the end of AIDS is possible, perhaps even in our lifetimes if we do enough of the right stuff, at the right levels, right now. 

But to secure the political and financial capital necessary to make the possibility of the end of AIDS a reality, there must be a massive, visible, loud, strategic and unified response to the pandemic.

It's high time for a surge of new troops, a revised battle plan and a fresh era of fighting in the global war on AIDS. And it's a perfect time for you to engage today, as people are packing bags all over the world, about to join a throng of 25,000 people convening in Washington, DC at the XIX International AIDS Conference where the discussion will focus on--as the theme of the conference suggests--how we "turn the tide" on AIDS together.

Many of you were there in the beginning of the pandemic. Many of you are too young to have been there. When AIDS first started ravaging bodies--wasting pounds of flesh off frames in weeks, covering people with huge cancerous purple spots known as Kaposi's sarcoma, blinding people, leaving them deaf in a cave of silence, wracking their lungs with pneumonia and wrenching young, healthy people from the prime of their lives--people were understandably terrified, and very, very, angry. 

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Because of misperception, fear and stigma, people living with the virus were barred from receiving health care in some hospitals. If they were admitted, their food was often left outside their rooms and got cold. Their doors were covered with biohazard symbols. People wore masks to visit them. When they died their bodies were wrapped in black garbage bags and many morgues refused to take them. Some of those who were still alive, and their friends, lovers, partners, neighbors and families, refused to accept the state of affairs and started activist groups to agitate for change. 

The famous ACT UP (it stands for AIDS Coalition to Unleash Power) was founded in New York City in the 1980s and it became the platinum example for how a small group of ordinary people from a diverse set of backgrounds with a wide array of ideologies and very different skills could coalesce organically to channel fear into anger, anger into action and action into change that has saved the lives of millions. 

All of us alive today with HIV have those early activists to thank for our survival. They ensured improved health care and greater human rights for people with HIV/AIDS. They helped lobby for legislation that protected people living with HIV/AIDS from discrimination. They pressured state and federal governments to talk openly about the topic of HIV/AIDS. They persuaded Congress to allocate more money to the care of people with HIV and to the research needed to help develop treatments for HIV/AIDS. They helped fast-track the development of certain drugs, they altered the way the Federal Drug Administration approved medicines (enabling them to do so faster so more people could get life saving drugs quicker). They influenced the way the National Institutes of Health (NIH) and other organizations conduct AIDS research. And they ensured that people living with HIV were sitting in the room and at the decision making tables when decisions affecting our lives were being made. In short, they made sure the collective needs of a growing and increasingly diverse community were heard--and answered. 

The early AIDS activists were effective for three main reasons: They were fueled by fury, they supported their arguments with irrefutable scientific evidence and they showed up--in the offices of pharmaceutical executives, at presidential election rallies, on Capitol Hill in the offices of Congress, in houses of state legislations--and sometimes, as they did when they covered Senator Jess Helms' house in an enormous condom to protest his reluctance to help people with HIV, in political leaders' personal domains. 

The early activists were experts in AIDS policy, law, science and research. They knew as much as the people they asked for change and their arguments were hard to dismiss or refute because they were based on facts, because they presented logical and viable solutions (many of which saved healthcare dollars) and because they presented those arguments and requests with profound emotion, in person, in unison and en masse. They were a group of people who would not--and therefore could not--be ignored. 

When ACT UP first released their collective power, there were about 2,000 people living with HIV hurtling toward disease and death. We've come a long way in some ways since then. As a result of early AIDS activism there are now 30 medications that help people with HIV stay healthy and that help slow the spread of the virus. But the war on AIDS is far from over. Though 6 million people with the virus are accessing life-sustaining care and treatment, tragically, for the other 28 million people living with HIV worldwide (750,000 of whom are in the United States), HIV remains a death sentence. 

This is where you come in. All of us whose lives were spared by the bravery, unrelenting efforts and heroism of those who came before us must help finish what they started. And we need many new friends and supporters to join our ranks.

The end game of today's war on AIDS is ensuring that we help all who are living with HIV know their status, that we connect as many people as we can to life-sustaining treatment to keep them alive and to prevent future cases of HIV while we hunt aggressively and quickly for a cure and/or preventive and therapeutic vaccines. 

This is why POZ has launched the POZ Army, a global, grassroots collective of people fighting for the cure/vaccine for AIDS--and prevention, treatment and human rights for all people at risk for or living with HIV/AIDS until a cure is found. Many of you are already recruits. We hope many more of you will join us today. We have revised and re-launched the POZ Army and it now directs you to many specific, critical actions that need the power of your voice and your promotion via social media.

It seems absurd, almost criminal, that we have the medical solutions to a disease like HIV/AIDS and are not administering them better, to more people in need. But the tide is turning. There is new leadership, attention and commitment to the issue on Capitol Hill. There are brand new bills to help people with HIV/AIDS making the rounds of Congress as I write and petitions and declarations all focused on ending AIDS are flying around cyberspace. And the world is listening. You can see all the action on POZarmy.com--a base camp of sorts for a new era of AIDS activism.

By joining the POZ Army, you will be personally engaged in the action and have a direct impact on decisions that impact the lives of tens of millions of people living with the virus. 

President FDR is famous for responding to a group of activists asking for his support thus: "I agree with you, I want to do it, now make me do it." It is again time to make our global political leaders do what we know can be done: herald in the end of AIDS. By joining the POZ Army, you will help our generation be the one that finishes what the brave souls who came before us started. Enlist today at POZarmy.com. And lace up your boots. We're going back to the front lines.

Let's Kick Some Viral Ass!

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I remember almost everything about the day I saw my only sister for the first time after I was diagnosed with HIV.

It was sixteen years ago in a train station in New Jersey. She'd come home from DC for the weekend. Tracy is two and a half years younger but most people who meet us assume she's older. Not, as you will see below, because she looks it but rather because her comportment is stately, her thoughts and the expression of them, focused and measured. She always shows grace under pressure and, since the days of our youth when I tried to beat up some little boy in our neighborhood who had a fascination for ripping the shells off snails, has always intervened diplomatically when my Irish blood surged in the face of some injustice I felt needed righting with passionate response. 

That day at the station was no exception.

cdc_regan_tracy.jpgI'd already broken the news to my mother. I planned to tell my sister face-to-face. It's just what you do when you need to let your best friend know that something terrible has happened.

But from the minute she stepped off the train and strode stoically down the long platform, I could tell she already knew. My mother had told her. I pretended to myself I was upset but I was relieved. Sitting beside my mother and watching her absorb the news I have HIV felt like being there when she discovered my dead body. It was like that, in a way. Because then, in 1996, no one was sure you could survive the virus. The shock and awe that moves through people who hear you have HIV for the first time is never fun to watch. But today, thanks to scientific advances and my own journey towards peace and comfort with the news, I can quickly reassure those who I tell that I'm going to be okay, that they're not going to get it, and that the fundamentals of my life aren't altered simply because I have to take daily treatment to keep a retrovirus at bay.


If Tracy was (or is) upset that I have HIV, she has never shown me. And the fact that she treats me exactly as she did before I had HIV has helped me enormously. It says, without her verbalizing it, that having HIV does not change who I am, who I am to her or who I am in the world. That is a powerful sentiment when much of society would like you to believe you are other, different, dirty, derelict, a deviant not deserving the support and compassion we offer people with every other type of disease (with maybe the exception of other sexually transmitted infections, addiction and mental health issues).

When we were close enough in the train station to speak, I opened my mouth, but no words emerged. I was like a fish, too near the surface of the water, my mouth gaping open and closed. She rescued me by saying, simply, "We're going to kick this thing's ass."

And that was that. She asked if I was hungry and without waiting for me to answer headed for Burger King.

Since we were little girls, we always shared our ketchup. We'd remove a wrapper from a burger and empty 10 or so of those mini packets on the paper to make a small condiment lake. And we double-dipped our fries. That's just what you do with someone who's your best friend.

I had spent countless, sleepless nights imagining the wide swath of her potential responses and my counter responses. But no iteration came close to the idea she'd acknowledge the fact that I have HIV, and act totally normal. Let alone eat out of the same pool of tomato paste.

She was sympathetic and wanted to understand what having this virus in my body meant for my health and my future. But, a lawyer, she had already researched the subject and the few questions she posed were ones to which she already knew the answers. She asked them, I suspect, more to show me that she cared, she understood and to indicate that she was willing to be an active partner in my health and longevity.

In the 16 years I have lived in spite of HIV, she has never changed her tune. She doesn't avoid the subject; she asks regularly how I feel, if I'm adherent, how my personal life is unfolding in the face of the complexity of being openly HIV-positive--and she jokes about the virus. Our code name for it is "high-five." (Get it? "Hi" and "V" - the Roman numeral for "five.")

But it's a small part of our daily conversations. A normal part. Not a hidden bogeyman, not a pink elephant, not a dark secret, not a topic that makes us squirm.

We went to the Vagina Monologues when we were both in our twenties. Until that night, neither of us had said the word "vagina" out loud, let alone to each other. Despite the fact that the vagina is a central part of womanhood, its existence had not been acknowledged until we sat side by side in a dark Off-Broadway theater screaming in unison with the audience, "vagina, vagina, VAGINA!" at the top of our lungs. And just like that, it became just a word, just a body part, just a normal part of a normal life.

It is the things we don't discuss, the things we hide, lie about, deny and wrap in silence and shame that have the power to hurt us. When we find the courage to address whatever it is life throws our way, whether it be that we have contracted a sexually-transmitted disease, or any of the other things that happen, we can come to terms with, embrace and overcome things that if left hidden, suppressed or ignored, will eventually hurt us. 

Saying a word that conjures something taboo over and over and over again renders the word, and the thing, just a word, and a thing. 

I've said HIV and AIDS so many times now, I say them with the same inflection I say "butterfly" or "seesaw." While obviously recognizing the dire pandemic they reference, I think the key to ending AIDS lies in being able to discuss it--calmly, openly, even-handedly, without hysteria or prejudice. If more people had talked calmly, openly, even-handedly, without hysteria and prejudice about vaginas when I was younger, I doubt I'd be living with HIV. Again, it is when we don't discuss things that we pave the way for them to hurt us.

The normalcy with with my sister treats the news I have HIV takes all the bluster out of the stigma surrounding the disease. On her watch, a mere retrovirus will not be allowed disproportionate power to screw up my mental and physical health. We are, simply, going to kick its ass. No hang-wringing. No squeamishness. No fear. No question. 

Her attitude about the virus allowed me to study it with an intellectual curiosity. And to accept and, as weird as this may sound, appreciate it. I respect all nature. HIV is an incredible natural creation. Some people have speculated whether HIV was invented in biological warfare labs. But I doubt humans could create something this beautifully resilient. It is almost a perfect virus. Capable of tricking some of the smartest cells in the body to believe erroneously that it isn't there. Capable of lying in latency in reservoirs, waiting until it's safe to re-emerge. A virus that causes illness and fatality, but not until years after initial infection which means the host has ample chance to inadvertently spread it to other hosts. It is a virus capable of creating a global pandemic that currently comprises 34 million people, including 1.2 million Americans. It is a virus that can enter the body of every type of person on any continent. The virus has no natural path for die off. The rate at which it kills is slower than the rate at which it spreads so its presence is assured, unless all who know they are living with it discover that fact and can access life-sustaining treatment. 

And therein lies the reason Tracy and I decided to appear in the CDC's new "Let's Stop HIV Together" campaign. Humans may not have been clever enough to create HIV but we have been clever enough to understand how to control and prevent it. There are now 30 medications that not only sustain the health of people with HIV but also simultaneously prevent viral spread as the risk of transmission can be lowered by 96% in all who access treatment and take the medication as prescribed. Treatment doubles as prevention. We have also made great leaps forward in understanding how we may one day soon develop a functional or sterilizing cure and headway is being made on vaccines and other biomedical tools of prevention. 

We can now end AIDS--science has proved it's possible. To do it, we need to assure all people that knowing your HIV status is key, we need to make it safe for people to come forward to get tested and linked to care (as no one is going to do either if we criminalize those living with the virus), we need to find innovative solutions to pay for access to treatment so that those who are living with HIV can get the treatment that slows viral spread. And, we need to cure HIV because the world can't pay for a lifetime of pills for tens of millions of people and because no one should have to spend their life taking pills if another solution is available. 

Fast-tracking cure research is integral to dissolving HIV-related stigma and for inspiring people to come forward for testing, treatment and hopefully, one day the cure itself. I am much more committed to taking better care of myself if there's a good shot I can live to see the cure. 

I never thought I'd survive long after my diagnosis. As I drive down to DC for the XIX International AIDS Conference later this week (AIDS2012.org; it runs July 22-27 but I'm going early to cover pre-conference stuff and the Quilt, more on that soon--for a preview, Quilt2012.org) I will be thinking about that day so many years ago when my sister's concerned, empathetic but ultimately matter-of-fact response set the tone for how I would live in the face of HIV.

Her compassion, acceptance of the facts, courage, lack of judgement and support have been as effective medicine as the countless antiretrovirals I have taken. As we head into the conference and hopefully a new phase of HIV awareness and advocacy around the world, I ask all parents and friends, co-workers and lovers and acquaintances of people with HIV to do a simple, but profoundly helpful, thing: see those of us living with the virus exactly as we were before the virus entered our bodies and our lives.

I am the same woman I was before HIV set up shop in my immune system. Well, that's not entirely true. I am more evolved for having to face the unwanted guest. A life with HIV has taught me greater tolerance, patience, determination and courage. It has reset the bar of my pain threshold and rejiggered my priorities. A life lived with acute awareness of its impermanence is a rich life indeed.

I offer my most profound thanks to my sister Tracy, the woman standing beside me in this campaign; a woman who has stood firmly beside me from day one. I send my love and gratitude to all the other friends and family members, lovers, partners, spouses, co-workers, etc. who also appear in this campaign beside the people living with HIV they love and support. I applaud all who come forward and plaster their face and story in the public eye in the name of ending AIDS. It isn't always easy I know.

And, finally, I give enormous kudos to the CDC for evolving from stick-figure depictions of people living with HIV to this warm, real, human campaign that shows that HIV can and does happen to every type of person. And that those people are good, normal people who are not different than the rest of society--or from who they were before the virus entered their  bodies and lives.

Please share this campaign with your friends and family. Get tested yourself and ask your children and friends and parents and neighbors and grandparents and others to get tested. It's free, it's safe and you can get a result quickly. And if you need help and treatment, it is available. And visit the campaign website and tell the CDC what you think. It's actagainstAIDS.org.

Here's the PSA:

Sixteen years after I met my sister on a train platform I will see her on another train platform--the one in Union Station in Washington, DC. (They have put up a billboard of us there.) I know it will move me to tears to look up and see her beautiful, unflinchingly strong self up there beside me because it was her decision to stand by me in the face of HIV that has enabled my survival. She is a huge part of how I got from terror on one train platform, to triumph over HIV on another a decade and a half later.

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She may not realize it this but that day when Tracy vowed to do away with HIV, so did I. And I will die trying. We are so much closer to kicking this thing's ass than we have ever been. We end AIDS in three necessary steps. Get everyone tested. Get everyone who needs it access to treatment. And cure it as fast as humanly possible.

Please stand with us. When those of us who have the virus are supported by those of you who don't, our collective power is enough to stop the pandemic. Together, we end AIDS.


Here we go again. A nation in financial trouble erupts in debate over whether those who can afford to help stabilize the economy will pitch in or whether we will instead gut budgets designed to protect people in need.

Yesterday, ACT UP held their 25th anniversary demonstration on Wall Street in NYC. They partnered with Occupy Wall Street and AIDS advocacy groups like Health Gap, Housing Works, VOCAL-NY and many others to march from City Hall to Wall Street. Their ask? A small tax (0.05%) on Wall Street transactions and speculative trades to help raise the money needed to end the AIDS pandemic and provide universal healthcare in the U.S. (The advocacy kicked off earlier in the day when 10 activists were arrested in a smaller, related demonstration on Wall Street.)

To see POZ's photos of the events:  

While AIDS activists locked up the streets of lower Manhattan, another Occupy rally took place in Union Square. Though it seemed to be about a different subject--namely making it more affordable for young people to go to school in America by preventing interest rates on student loans from doubling--the two demonstrations were linked by HIV/AIDS.

This is because one of the bills headed to the floor of Congress today intended to solve the student loan interest rate crisis would be funded using dollars currently slated to help states and communities fight diseases like HIV/AIDS, heart disease, cancer, stroke, and diabetes--a move that ultimately reduces health care costs.

On Wednesday, U.S. student debt reached $1 trillion dollars. (According to the Federal Reserve, the number is $870 billion.) The problem's about to get worse. Unless Congress passes legislation to prevent it by extending the Bush-era 2007 College Cost Reduction and Access Act, interest rates on subsidized Stafford student loans will double from 3.4 to 6.8 percent in July of this year.

No one argues that interest rates for poor and middle class student should be maintained for another year. The question is how we'll pay for it.

Guess who's sponsoring the bill that helps students at the expense of public health dollars? Yep. The GOP. Speaker John Boehner's proposal would finance the $5.9 billion cost of maintaining the 3.4 percent interest rate for one year by repealing the Affordable Care Act's Prevention & Public Health Fund

It's really critical to note that this bill was slammed together last minute and seemed to appear out of nowhere. Perhaps that's because just last week, the GOP voted FOR the Ryan budget which...doubles the interest rates for student loans (among other atrociously bad things). 

Under pressure from the president and Congress, the GOP scrambled to find a way to protect students (good idea!) but decided to do it at the expense of desperately needed preventive health care (bad idea!). Oh yes, and they called the dollars they're tapping a "slush fund." Hmmm. In a nation with 56,000 new HIV infections a year, a preventable disease mind you, how is it that that money is not needed for more and better prevention? A few other things those dollars might cover: screenings for breast and cervical cancer, childhood immunizations, initiatives to reduce birth defects. Ladies, do you smell what I'm cooking? Are we just going to stand by while some of the boys in DC threaten the safety of our bodies and children? Methinks not.

Meanwhile, the Democrats have a different and to anyone who cares about the health of Americans and capping future health care dollars, arguably a better idea. Democrats want to fund the freeze on the student interest rate (in part) by increasing corporate tax rates, say, for example on the oil companies.

According to The Hill's report of the action yesterday:

"On Tuesday, Senate Majority Leader Harry Reid (D-Nev.) introduced an offset that would require shareholders in S-corporations -- typically small-sized businesses -- to pay payroll taxes from which they're now exempt. 

Rep. George Miller (Calif.), the senior Democrat on the House Education Committee, introduced legislation Wednesday that would cover the $5.9 billion cost by eliminating tax breaks for the oil-and-gas industries.

Reid's proposal has been rejected by GOP leadership."

If you ask me, it sounds a little like...the ACT UP ask? Asking the largest and richest companies in the nation to forgo a fraction of their profits to help keep disinfranchised Americans healthy and alive, all while protecting the public public health, future generations and reducing future health care costs.

Of the 34 million people estimated to be living with HIV globally, there are 28 million not accessing treatment that both sustains their lives while slowing the spread of the virus. In the United States, there are an estimated 750,000 people living with HIV not accessing treatment. HIV infections occur daily around the world. Since treatment, when taken consistently, can lower the risk that the virus will spread by up to 96%, treatment can double as a form of prevention.

This means money spent on HIV treatment is prevention. And we need to simultaneously support scientifically proven methods of biomedical and non-biomedical methods of HIV prevention.

When will some of the leaders of this nation realize that gutting the safety nets for our nation's most vulnerable people or burdening young people with larger loans in a challenging job market is just bad business for the future of America?

How is it that we must choose between the ability to educate future generations affordably and keep them safe from preventable diseases? The GOP-sponsored bill to keep student interest rates from doubling comes at a huge price to preventive health dollars.

I don't want to see student loans double. But I also don't think the only solution is to pay to protect America's students at the expense of America's health. Because for a truly prosperous and healthy nation, we need widespread access to health care and education. And not just for the minority.  

The revolution's coming. I stood with a lot of angry, frightened, disinfranchised people fighting for their lives yesterday. There comes a time, when you've done enough bad things to people you think have no power to fight back that they do.

And few people fight harder than those fighting for their lives. I know. I'm one of 'em.

Join us to support students and people living with HIV right now by sending tweets using #dontdoublymyrate, #taxwallst #endaids. To show solidarity with POZ and ACT UP, use @pozmagazine and @actupny in your tweet. Thanks for joining the fight!

One of our young friends from the Student Global AIDS Campaign says it plainly:

Life and Death

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This is my editor's letter from the current (March 2012) issue of POZ.

Would love to hear your comments! Please post them below...Also, links to the full March issue of POZ are at the end. Enjoy!

If my doctor had told me I'd live to see the 30th anniversary of AIDS, when I was diagnosed 15 years ago, I wouldn't have believed him. At that time, doctor's waiting rooms were filled with people on the brink of death. All I could think about was how long it would be until I joined them.

When death sideswipes you and takes out the person next to you instead you're left with a sense of survivor's guilt. For years I wondered why I got to survive when others did not. Partly, it was luck. It was also because I was diagnosed when certain medicines were available. I had a job and health insurance so I could afford care. And I was diagnosed early, before I was too weak to recover.

Up to the mid '90s, it was understandable that survival was a dicey proposition for people living with HIV; scientists were struggling to get the upper hand on the virus. But a decade and a half later, we have more than 26 antiretroviral drugs (ARVs) capable of stopping HIV progression--drugs that also lower viral load so that the risk of transmission is reduced by 96 percent (if treatment is effective).

And yet, of the 1.2 million Americans estimated to be living with HIV/AIDS, only 262,000*, or 22 percent, are on ARVs. Some people aren't on treatment because they may not yet need it or because they don't know their HIV status (one in five Americans living with HIV are unaware they are positive), but many who want and need ARVs can't get the drugs because they can't afford health care.

But because HIV/AIDS remains something many would rather not think or talk about, because people erroneously believe it is under control, and because there is still too much stigma and silence around HIV--the mainstream media barely register the fact so many people with HIV can't access treatment. The world needs to be reminded that people are still dying of AIDS in America.

Which is why we decided to feature the incredible work of Joseph's House, an AIDS hospice in Washington, DC. A reflection of the disproportionately high HIV rates in the District of Columbia, Joseph's House punctuates the fact that we still have a big problem. Having effective medications is of no consequence if we can't ensure they reach those in need.

This month's issue also examines the outdated law that bans HIV-positive people from donating their organs to other HIV-positive people. In "The Right to Give Life," we show how removing the ban offers the double benefit of saving lives of people with HIV in need of organs while freeing up more room on the organ waiting list.

It's time that HIV-related laws and health care policies got in sync with the reality of the AIDS epidemic in America. Even though we live in economically strained times, we must ensure people don't die when we have the means to save them.

For me, survival guilt is worse when you know you could do something and do not. Early AIDS activists fought to develop the drugs that have saved our lives. It's now our job to fight to get those drugs (and organs) to all in need.

I invite you to join me in this fight. Check out our new initiative at poz.com/roadtowashington to learn how we can end AIDS together.

To read the March 2011 issue, click here. To read it on Issuu, a cool new digital platform that allows you to read the magazine as it looks in print online, click here.

* Since I wrote this letter, the Centers for Disease Control and Prevention released new data showing that approximately 400,000 people with HIV in America are on treatment. This means roughly 28 percent of the estimated 1.2 million Americans with HIV are taking antiretroviral drugs for HIV. But that still leaves about 800,000 people not on treatment that both saves their lives and can lower the chances the disease will spread. If you have HIV but are not on treatment because you think you can't pay for it, know that there are many ways to get your drugs covered. Read this amazing AIDSmeds lesson on patient drugs assistance programs and learn more. Need a doctor or a health worker to help connect you to care? Check out POZ's health services directory here to find the support you need to connect to care. And let us know if you're having trouble finding the help you need!

Will Borrowing From PEPFAR Kill Paul?

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On World AIDS Day, December 1, 2011, President Barack Obama publicly pledged to make an "AIDS-free generation" part of his administration's legacy.

This past Monday, the president released his proposed Fiscal Year (FY) 2013 federal budget. In light of his recent promise, I hoped his proposed spending levels for both domestic and global HIV/AIDS would be sufficient to begin to end the pandemic.

They are not.

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This photo and all others in this blog were taken by me on my last trip to Kenya. The HIV status of those in the photos is unknown. They were taken at a variety of health clinics that serve a variety of health conditions.

In fact, the president's proposed spending levels and the reallocation of funds for the President's Emergency Plan for AIDS Relief (PEPFAR) endanger the lives of people living with HIV--both at home and abroad.

At first brush, the president's budget suggested good news for people living with the virus stateside. Obama requested an additional $75 million in funding for Ryan White programs, including $67 million for the AIDS Drug Assistance Program (ADAP); $30 million in HIV/AIDS prevention funding for the Centers for Disease Control and Prevention (CDC) and $20 million to support care provided by HIV clinics across the country.

The president included a provision in the budget that if enacted into law would allow local communities the power to use federal funds for syringe exchange, a smart move that will help stop the spread of HIV and hepatitis among injection drug users. And, the budget rejects discretionary funding of failed abstinence-only-until-marriage sex education programs.
 
The president also proposed a $1.65 billion funding level for the Global Fund to Fight AIDS, Tuberculosis and Malaria; the increase of 26.9% would allow the U.S. to make good on its Global Fund pledge of $4 billion over 3 years. 

All these things are wonderful and speak to the president's desire to stop the illness and death caused unnecessarily by HIV.

But my job is to look the gift horse in the mouth. And when I did, things started to look less rosy.

The Shit People Say About AIDS…

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I confess. I am totally addicted to the "Shit People Say" YouTube phenomenon. It started with "Shit Girls Say" and went wildly viral from there.

In the video above, "AIDS" is part of the "Shit Nobody Says." (Read to the bottom and see POZ's own video..."Shit People Say About AIDS.")

That AIDS is something nobody talks about is a large reason why we can't stop the spread of HIV/AIDS. It's not on the tips of our tongues nearly as much as it should be. Poking fun of it is one way to get the conversation started.

It happened the other night when, at a dinner party, my newly-divorced friend said she'd recently started dating. As she described her encounters with several different men another friend joked to her, "You better be careful or you'll end up on Regan's medications."

At first, I was stunned. Did someone just crack an AIDS joke? At my expense?

The whole table of 10 went silent. Everyone stared at me.

Why AIDS Can't Lose in the Super Bowl

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Normally, I don't encourage inter-AIDS-agency brawls and bets but this one is awesome because either way, people living with HIV win.

Check out the wager between AIDS Action Committee's president and CEO Rebecca Haag and Gay Men's Health Crisis' CEO Marjorie Hill.

Haag's rooting for the Patriots. Hill's pulling for the Giants.

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Photo: courtesy AIDS Action Committee

This Jersey girl has gotta go Giants...

But if I had to put my money on Hill vs. Haag, I wouldn't know where to place my bets. Both are tough, both are scrappy, both like to win, both often do...

Thanks girls for wagering $1,000 each to help people with HIV and to use the Super Bowl to raise AIDS awareness...

Now, if we can only get Madonna to sing "Like A Virgin" at halftime and ad-lib a line about AIDS!

Remembering AIDS in Manhattan

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I distinctly remember when Kenneth Cole's "We All Have AIDS" awareness campaign first appeared in 2005. It featured prominent people in the fields of entertainment, politics, culture and science and was designed to illuminate the devastating stigma connected to people living with HIV/AIDS. The tagline was "We All Have AIDS...If One of Us Does." The message was clear: HIV does not discriminate. Therefore, people should not discriminate against people living with HIV.

I remember thinking how desperately I wished I'd understood that better before I contracted HIV. Because it was the thought that HIV couldn't happen to me that let me make a decision that left me vulnerable to the virus.

None of us think terrible things will happen to us, until they do. And when they do, when we get hurt, or sick, or are somehow touched by life's darkness, people (except those who love us unconditionally) often instinctively turn away.

This phenomenon is especially true with HIV/AIDS. The myths, misperception and stigma surrounding the disease cast it in a negative light unlike any other.


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