I'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.
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.)
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.
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."
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:
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!
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.
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.
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.
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.
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!
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.