International AIDS funding vs. Domestic AIDS funding; POTUS must act NOW!

When the President's Emergency Plan for AIDS Relief, or PEPFAR, was enacted in 2003 under President George W. Bush, there was an international AIDS crisis facing the world. However, people living with HIV/AIDS (PLWHAs) in the United States were not immune from it because they were facing potential funding cuts to HIV/AIDS programs, as well as growing waiting lists under the AIDS Drug Assistance Program (ADAP). Today the story is unchanged; in fact, the AIDS crisis in America hasn’t been as dire since the epidemic began 30 years ago. How is it that America can spend BILLIONS in U.S. taxpayer dollars on overseas initiatives under PEPFAR, but cannot find approximately $100 million to alleviate the current ADAP crisis in the United States? Have American PLWHAs have fallen by the wayside under the Obama Administration’s handling of our domestic AIDS crisis, most notably with ADAP waiting lists reaching record high levels?

The outcries from numerous organizations, PLWHAs, their friends, family and loved ones have grown into one voice...one movement...with one goal. Their purpose is to bring awareness to the AIDS crisis in America with the achievable goal of ENDING the ADAP crisis now! When will POTUS and other leaders in Washington recognize the problem and finally ACT on it in a substantial and meaningful way?!? The crisis is not going away, and neither are HIV/AIDS advocates!

So, what is PEPFAR?

Launched in 2003 by President George W. Bush with strong bipartisan support, PEPFAR is America’s commitment to fighting the global HIV/AIDS pandemic. Through shared responsibility and smart investments, PEPFAR is saving lives, building more secure families and helping to stabilize fragile nations.

No one is questioning the need for PEPFAR!

How is PEPFAR funded?

With the generous support of the American people (through taxpayer dollars), the U.S. Government has committed nearly $46 billion to bilateral HIV/AIDS programs, the Global Fund to Fight HIV/AIDS, Tuberculosis and Malaria, and bilateral TB programs through fiscal year (FY) 2012.

PEPFAR’s success is measured in lives improved and saved.

➢ In fiscal year 2010, PEPFAR directly supported life-saving antiretroviral treatment for more than 3.2 million men, women and children worldwide, up from less than 2.5 million in 2009.
➢ PEPFAR directly supported antiretroviral prophylaxis to prevent mother-to-child HIV transmission for more than 600,000 HIV-positive pregnant women in fiscal year 2010, allowing more than 114,000 infants to be born HIV-free.
➢ Through its partnerships with more than 30 countries, PEPFAR directly supported 11 million people with care and support, including nearly 3.8 million orphans and vulnerable children, in fiscal year 2010 alone.

PEPFAR is making smart investments to improve lives, build more secure families and help stabilize fragile nations. With continued support from the U.S. Congress, PEPFAR will be able continuing working towards the goals of treating more than 4 million people, preventing more than 12 million new HIV infections, and caring for more than 12 million people, including 5 million orphans and vulnerable children.

➢ For FY 2011, President Obama has requested nearly $7.0 billion, including nearly $5.74 billion for bilateral HIV/AIDS programs, $1 billion for the Global Fund, and $251 million for bilateral TB programs.
➢ For FY 2012, the President is requesting nearly $7.2 billion, including nearly $5.6 billion for bilateral HIV/AIDS programs, $1.3 billion for the Global Fund, and $254 million for bilateral TB programs.

While international efforts are laudable, and the ROI is huge, domestic funding for HIV/AIDS services and supports are severely underfunded. If POTUS does not act, then many PLWHAs fear a flashback to the 80’s...people dying. This time not because there are no medicines to treat the disease, but because we have insufficient funding to put these medicines in the hands of the people who need them. This is unconscionable, and begs the question...is this American?

And no one is questioning the need for America to fund PEPFAR!

CLICK HERE to read "THE INTERNATIONAL vs. NATIONAL DEBATE: Is the President’s Emergency Plan for AIDS Relief (PEPFAR) international commitment to combating HIV/AIDS succeeding at the expense of those people living with the disease in the United States?"

Is PEPFAR is an unfit parent who feeds her neighbors as her own family goes hungry?

Through FY2012 under PEPFAR, U.S. taxpayers will have spent 46 billion to support this initiative. Is it wrong to think that the U.S. could have funneled some of that money over the past 9 years into domestic HIV/AIDS initiatives, such as treatment, prevention, research, and other services for PLWHA under the Ryan White Program? Increasingly, many PLWHAs are asking this very question!

Federal appropriations for the Ryan White Program FY2012 equate to $1.3 billion, and AIDS advocates are asking for an increase of $106 million just to maintain ADAP; though this would not be enough to end the ADAP wait-lists. An increase of $360 million is needed to maintain ADAP programs and fill the structural deficits that have built up over the last several years. Is 7.2 billion in taxpayer money appropriated under PEPFAR and $1.3 billion under the Ryan White program fair? Why would U.S. taxpayers, and especially American PLWHA not be outraged?

Further egregious, last week in an effort led by New York's junior Senator Kirsten Gillibrand, 18 U.S. Senators sought to immunize the Global AIDS funding from cuts threatened by the impending showdown over the national budget and deficit committee. The letter is signed by Kirsten Gillibrand, Richard Durbin (D-NY), Barbara Milkulski (D-MD), Daniel Akaka (D-HI), Dianne Feinstein (D-CA), Barbara Boxer (D-CA), Ron Wyden D-OR), Mary Landrieu (D-LA), Charles Schumer (D-NY), Frank Lautenberg (D-NJ), Bernard Sanders (I-VT), Sheldon Whitehouse (D-RI), Tom Udall (D-NM), Ben Cardin (D-MD), Jeff Bingaman (D-NM) and Christopher Coons (D-DE).

Do they know that this is the 30th year of the AIDS epidemic in America? Are they aware of the domestic AIDS crisis? Are they aware that the impending funding cuts could put the lives of PLWHAs in America at risk? Are they aware of the rich history of AIDS in America and the advocates who marched...who protested...who fought for future generations; all the while watching dozens upon dozens of friends die, and they themselves on the brink of death?

So again, is it wrong for Americans living with HIV/AIDS to look in their own ‘backyards’ before looking overseas?

Inaction and silence WILL = death of countless PLWHA in America. Mr. President, 1.2 million Americans living with HIV/AIDS, their friends, family, and countless advocates; with one resounding voice they ask you to intervene in this crisis, the time to ACT is NOW!

Please sign the petition on change.org requesting that the POTUS and Congress work together to divert 15-20 percent of PEPFAR funds to domestic HIV/AIDS programs: http://www.change.org/petitions/divert-15-of-international-aids-relief-money-to-help-american-plwha.

Blog by Kevin Maloney, ADAP Advocacy Association member from Clifton Park, NY

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Sources:

http://www.pepfar.gov/documents/organization/80161.pdf
http://www.adapadvocacyassociation.org/pdf/2009_Domestic_AIDS__04.06.pdf
http://www.nastad.org/Docs/100316_FY2012%20Ryan%20White%20Funding%20Needs%20B.pdf
http://www.dailykos.com/story/2011/09/22/1018932/-Senator-Gillibrand-Leads-18-Senators-To-Protect-Global-AIDS-Funding

As goes ADAP, so goes Ryan White programs

In politics there is a saying, "As goes Maine, so goes the Nation" that dates back to 1888, stemming from an age-old saying used to describe the state's reputation as a bellwether state in presidential politics. That year, Maine voted for the Republican nominee Benjamin Harrison who won the presidency despite losing the popular vote. In more recent years, Maine's political status has changed, giving way to Missouri and Ohio. Using that analogy as a backdrop, witnessing the AIDS Drug Assistance Program (ADAP) crumble as 8,785 people living with HIV/AIDS are denied access to their life-saving medications should cause alarm to anyone advocating for Ryan White programs.

Why?

During the 1990s when the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed, it was done so with strong bipartisan support. In fact, the late Sen. Edward Kennedy - the liberal lion of the Senate - was joined by one of the most conservative Republicans to introduce the legislation, Sen. Orrin Hatch. Every reauthorization since has also enjoyed the same level of bipartisanship. But while certain aspects of the Ryan White law have struggled to garner consensus, often falling victim to the ideological divide, ADAP and its funding always served as the model of how the two political parties could work together. In many respects, ADAP served as the bellwether program of the Ryan White law.

President Bill Clinton worked with House Speaker Newt Gingrich to ensure ADAPs were adequately funded because both leaders understood the Return on Investment (ROI) from a public health perspective. From 1995 to 1999, federal funding for ADAPs fared relatively well, as ADAP funding increased from $51.9 million to $460.6 million. But the last major influx of funds occurred in 2003, when Congress approved an increase of nearly $100 million. Since then, however, ADAPs have been perpetually underfunded at the federal level.

In August 2003, ADAPs were facing a similar funding crisis, albeit not equal to the scale faced today. The ADAP Working Group published its White Paper, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," in response to the crisis at the time when there were 509 people living with HIV/AIDS on ADAP waiting lists in 10 states. (1) It summarized ADAP's bellwether status very accurately:

"ADAP was generally well funded from FY ’96 through FY ’00 with active and open bi-partisan Congressional support. ADAP related crises did occur but tended to be a function of new programs, rapid scale up, State level resource needs, or local health care delivery issues. Underfunding on a serious nationwide federal level started in FY ’01 and continues." (2)

Fast forward to 2011, when ADAP waiting lists and other cost containment strategies are at record high levels. In fact, historically nothing compares to the crisis facing the nearly 10,000 people living with HIV/AIDS being adversely impacted by the ongoing ADAP crisis. During the last "major" ADAP crisis, ADAP waiting lists only pushed the upward levels of 1,400+ on waiting lists. Now, there are just shy of 9,000 on waiting lists, approximately another 1,000 kicked off the program (via eligibility changes) and states like Ohio are toying with medical criteria, which was once taboo.


ADAP wasn't immune from internal bickering over how to solve the crisis, as some national HIV/AIDS organizations were hesitant to publicly challenge longtime leaders, despite their failure to solve the problem. "The Politics of ADAPs" (3) provides an excellent historical analysis on why the current ADAP crisis should cause alarm for HIV/AIDS advocates fighting for other important programs, such as prevention.

Think back to the struggles...and failures...over needle exchange programs, or abstinence only sex education. When HIV/AIDS advocates were desperately trying to fend off attacks on proven prevention strategies from the religious right, ADAP was receiving millions of dollars in new federal funding. So, ADAP's ongoing fight to secure as little as $101 million dollars despite the overwhelming evidence and history of bipartisan support is troublesome because if a "popular" HIV/AIDS program like ADAP is facing increasingly tough times, how can other "less popular" programs expect to make needed gains?

The ongoing debate over federal appropriations is evidence enough. For Fiscal Year 2012, ADAP funding increases could be as little as $15 million despite the escalating crisis. Meanwhile, most other HIV/AIDS programs could look at level funding, or even damaging spending cuts. (4)

Carl Schmid, Deputy Executive Director of The AIDS Institute, best summarized the ongoing plight facing domestic HIV/AIDS programs:

"While we appreciate Subcommittee Chair Tom Harkin's effort to preserve existing programs, our Nation is not going to reduce new HIV infections or provide adequate care and treatment to low-income people living with HIV/AIDS without new resources. This is extremely disappointing since we have the drugs to keep people alive, the knowledge that treatment is prevention, along with a number of other tools that help prevent HIV, and the leadership by the Obama Administration as detailed in the National HIV/AIDS Strategy. Without the necessary resources, the goals of the Strategy will not be achieved, and thousands of more people in the United States will needlessly become infected with HIV." (5)

Until the HIV/AIDS community can find consensus on how to solve the ADAP crisis, it is hard to imagine how other important programs can receive the resources that they desperately need, too. As goes ADAP, so goes Ryan White programs.

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(1) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 1.
(2) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 3.
(3) ACHIEVE, "The Politics of ADAP," Fall 2008, p. 11.
(4) U.S. Senate Committee on Appropriations, "Summary: FY12 Labor, HHS, and Education Appropriations Bill," September 21, 2011.
(5) The AIDS Institute, "Senate Flat Funds Most Domestic HIV/AIDS Programs," September 22, 2011.

A Day With HIV In America

POSITIVELY AWARE is once again spearheading its snapshot of HIV/AIDS called "A Day With HIV In America." Whether you’re negative or positive, live with HIV or live for someone with HIV, POSITIVELY AWARE's campaign is through the lens of a camera. It is the 2nd annual event, so get ready to show your smile!

On September 21st, grab your digital camera or smartphone and take a snapshot. Capture a moment of your everyday life. Each photo tells a story. Get in the picture, and tell your story.

The ADAP Advocacy Association (aaa+) encourages people living with HIV/AIDS currently receiving their life-saving medications under the AIDS Drug Assistance Program (ADAP) to submit photos. Let's put a face on the ADAP program, especially since as of September 8th there were 9,066 people living with HIV/AIDS on ADAP waiting lists in 11 states.

Photo submissions will be posted on their site. Select pictures will be published in the November-December issue of POSITIVELY AWARE. Send your photo by September 26th to artdirector@tpan.com.

To learn more, go to http://www.adaywithhivinamerica.com/.

It's Time We Tweeted to President Obama

On Thursday, September 15th starting at 7:00am, President Obama will be put on notice that the ongoing crisis facing the AIDS Drug Assistance Programs (ADAPs) is totally unacceptable. But this notice won't be sent via email, fax, snail mail or demonstration in front of the White House. So how will this message be sent, you ask?

The ADAP Advocacy Association (aaa+) is taking a page out of the playbook from the "Arab Spring" protesters in order to launch its "ADAP Fall" social media campaign starting with a “Obama-ADAP Twitter Day.” The purpose of the campaign is to raise awareness about the growing ADAP waiting lists by leveraging one of the leading social media outlets. Twitter users are asked to direct their hashtag #ObamaADAP Tweets at President Obama using handle @whitehouse.


Ultimately, aaa+ and many other national, state and local HIV/AIDS organizations want the Obama Administration to reprogram funding from the U.S. Department of Health & Human Services toward the Ryan White CARE Act and ADAP, specifically. President Obama did something similar last year, but the $25 million transfer wasn't nearly enough funding to make a noticeable dent in the escalating ADAP waiting lists.

Twitter users are asked to do the following on Thursday, September 15th starting anytime after 7:00am:

Send Tweets hourly;

Use Twitter hashtag #ObamaADAP in the same Tweet;

Direct Tweets at President Obama with handle @whitehouse; and

Encourage friends and colleagues to Tweet, too!

To view the aaa+ profile on Twitter, go to https://twitter.com/#!/adapadvocacy.

The goal on September 15th is to make hashtag #ObamaADAP trending on Twitter with ADAP-related tweets directed at President Obama by using handle @whitehouse. Some example tweets might include:

@whitehouse ADAP waiting lists continue to grow! We need your leadership President Obama to end #ObamaADAP crisis!

President Obama, please end the ADAP waiting lists! @whitehouse How long will you let this #ObamaADAP crisis last in the United States?

@whitehouse End ADAP Waiting Lists Now #ObamaADAP

As of September 1st, there were 9,298 individuals in 11 states on ADAP waiting lists, including Alabama with 211 individuals; Florida with 4,022 individuals; Georgia with 1,715 individuals; Idaho with 31 individuals; Louisiana with 1,056 individuals; Montana with 28 individuals; North Carolina with 340 individuals; Ohio with 59 individuals; South Carolina with 836 individuals; Utah with 50 individuals; and Virginia with 950 individuals.

“Out to Lunch – Be Back When Funding’s Gone!”

“OUR FUNDING IS GETTING CUT!!! THE SKY IS FALLING!!!”

For those of us living in the HIV/AIDS community, this is the annual refrain we’ve heard since the Ryan White Care Act was first authorized in 1990, and it is a refrain which we will likely continue to hear ad nauseum until most of us are long-since dead of old age. What is wonderful about the Ryan White Care Act is that it enabled an entire generation of first-round AIDS survivors access to treatments, medications, and medical services that were, up to that point, a high-priced pipe dream that led to a pine box surrounded by the tens of our friends who were left to arrange the funeral.

I know that introduction sounds considerably morose – one might suggest that it is cynical; however, it is the constant repetition of the Funding Refrain that has lulled many of our national HIV/AIDS lobbying organizations into a persistent vegetative state. Pursuing additional funding on the national level (as opposed to the international level) has become a process of celebrating minor victories and scrambling to scoop up whatever scraps are thrown our way – and yet, despite these considerably minor victories in increased funding, still our local-level clinics, providers, and non-profits struggle to provide the services for which the national organizations claim they’re fighting.

Enough.

For twenty-one years we have watched these organizations squander our limited resources in exchange for highly paid executives, increasingly limited access to people who can actually help our cause, and depressingly minor victories. These groups have siphoned the money from our pockets for over two decades, always claiming that they are in dire straits, all the while playing the roll of Showershot Socialites, throwing lavish parties, a seemingly endless number of self-congratulatory awards ceremonies, and falling all over themselves to let us know that our dollars are going to good use; that we’re getting “unprecedented” access to officials sympathetic to our cause.

To quote David Sedaris, “If you’re looking for sympathy, you can find it between “shit” and “syphilis” in the dictionary.

It is time to face a stark reality – the funds are, indeed, drying up. More accurately, the funding was increased after remaining stagnant for nearly a decade, but that increase was transparently insufficient to keep up with a growing epidemic of new infections, longer life spans due to better treatments, and the inconvenient blessing that HIV/AIDS is no longer a death sentence. This time, however, we are faced with a legislature who insists that whatever funds are added must be offset by cuts elsewhere, meaning that someone’s pet project is going to get its funding cut, and someone, somewhere is going to throw a hissy fit over the proposal.

Unfortunately, the people throwing the hissy fit are those in the HIV/AIDS establishment. Despite the mounting evidence that the accepted and traditional methods of HIV lobbying are failing to net the results needed to sustain vital programs like Ryan White, ADAP, and HOPWA, these organizations continue to rely upon the brand names they acquired twenty and thirty years ago when they actually exhibited effective leadership and lobbying skills.

What is more unfortunate is that the results of a decade of basically fruitless lobbying efforts (i.e. – inadequate funding) fall upon the local organizations struggling just to keep their doors open during a recession unlikely to end anytime soon for those making fewer than six figures. In Long Beach, CA, preliminary numbers for incoming donations to help provide vital services for clients have shown nearly a 50% drop over the past two years. The HOPWA program in Los Angeles County, designed to provide living assistance for those on a fixed income living with AIDS, has all but ground to a halt because Section 8 housing has not opened up for new applications in over two years. Rural clinics across the country are seeing their funding slashed as the limited resources are redirected to more densely populated (and often more ethnically diverse) areas of the state, leaving those with the least access to competent and quality health services with nowhere to turn.

We live in unprecedented times…and that requires unprecedented measures. The time has come to reevaluate our collective approach to lobbying for our cause, and to recognize that we cannot rely on our traditional allies to help us if they are unwilling or unable to do so. It is time to come up with a new strategy, and to do so, we must face the new realities of 21st Century HIV/AIDS Funding:

1.) The gay and minority communities are tapped out.

There is only so much money we can continue to expect from a small percentage of affected communities, and their coffers are running on fumes. We need to branch out to incorporate others into our fight; we need to model ourselves off of the Breast Cancer campaign. They managed to take a silent killer that no one spoke about for most of the 20th century and turn it into the most profitable, best-funded example of great marketing, organization, and leadership in the healthcare community. Would Breast Cancer lay back and watch its funding get slashed? I think not.

Breast Cancer has massive corporate sponsors like Major League Baseball – an entirely male organization that sports several prominent members who are survivors of Prostate Cancer (which saw nearly 10,000 more new cases in 2010 with a higher male mortality rate). Yet, still – Breast Cancer wins the day while Prostate Cancer stays in the shadows.

Where are OUR corporate sponsors? For the most part, we have relied upon the pharmaceutical companies to provide us the sponsorship and ad space we need to get our messages out. That has to end.

2.) We can no longer rely on the Democratic Party to be our staunch allies.

Regardless of how many promises they make, initiatives they support, or awards we throw at them, the Democratic Party can no longer be counted upon to help us accomplish the goals necessary to maintain viable programs for low-income individuals over the long run. The 90s are over, and it’s high time that we stop pretending that they’re going to return.

[Photo: AIDS Healthcare Foundation protesting then-House Speaker Nancy Pelosi as ADAP waiting lists exploded from 99 people living with HIV/AIDS to several thousand]

Time and again, we’ve been duped into believing that the Democrats were going to fight in our name and help to better our circumstances, and due to either a lack of spines or the new political realities of the 21st Century, they lack both the will and the ability to get the job done. This means we must turn to other resources, and those cannot be obtained at an all-Dem fundraiser, cocktail party, or awards ceremony. They must be brought over to our side by showing them the realities of HIV/AIDS funding in their own districts; in their own hometowns.

Republicans are responsible for the largest increase in U.S. international aid in the last thirty years. By comparison, the increase on the national level brought to us by the majority Democratic legislature paled so much that I am forced to admit (much to my chagrin) that the GOP has done better for HIV/AIDS in the last decade.

3.) We need to create new allies out of old enemies.

While the 80s and 90s engrained in our community the belief that the Democratic party would forever be our allies, there was and equal and opposite reaction for the Republican party. It is impossible for many of us to forget when many prominent GOP legislators stood before the houses of Congress to suggest that we be rounded up, sent to an island, and exterminated; that we be visibly tattooed to display to others that we had AIDS. The specter of shared history in Germany during World War II seemed to be coming back to haunt us.

[Photo: Former California Republican Congressman Bob Dornan symbolized the anti-AIDS rhetoric coming from many within the Republican ranks during the 1980s and 1990s]

Unfortunately, the GOP has for nearly forty years been held hostage by the Religious Reich – the Talibangelicals who refered to us as Sodomites, insisted that allowing us to live will exact God’s revenge on the world through AIDS, and stated that our disease is God’s punishment for our war against nature. It is disheartening that this movement still holds such a stranglehold over the most extreme elements of the GOP that even the most moderate candidate must skew his views drastically to the right simply to get nominated and elected.

There is light at the end of that tunnel, however – an increasing number of studies and polls have shown that grip to be weakening, particularly with people under the age of 45. The younger generation of GOP activists, though we may not agree with their approach to fiscal governance, are more than understanding of our plight, and can become if not powerful, then at least new allies in our fight to maintain relevance.

It is incumbent upon our community to welcome these new comrades into our fold – we must set aside our feuds and grudges, and stop holding the young responsible for the faults of the old. We must ensure that we make solid allies of them while we wait for their gerontocracy to die and for their influence to die with them.

4.) Our message no longer resonates with the general public.

Once again, the Breast Cancer lobby is a great example of how to make a disease that saw new cases in only .08% of the U.S. population in 2010 the largest money making health lobby in the world. They bring the message home to the American public by de-stigmatizing the disease and making it accessible. They’ve made it the “sexy cancer,” to use the words of a colleague of mine.

We have done something similar. We’ve taken a chronic illness that once meant certain death and turned it into a manageable disease represented by muscular, beautiful models whose struggles with HIV led them down the path to Gold’s Gym. Gone are the wasted, lesion-ridden faces of the 80s and 90s; gone are the people who are less successful at fighting their disease, or whose strains are multi-drug resistant.

We need a new marketing strategy – one that doesn’t hide the reality of the disease. The current strategy, while successful at making HIV acceptable, has lowered the national belief that funding for research, treatment, and social services is an imperative. Success stories work well when you’re trying to get people to get tested; tragedy brings in the dollars and cents.

Ultimately, the choices are never going to be easy. How can we, the HIV/AIDS community, say to those running the national agenda that their service has been appreciated, but we’re just not that into them? There will be those who will be disenfranchised, and feelings will be hurt, but we cannot forget our core purpose: providing adequate, competent, and consistent care for those who are most in need.

Blog by Marcus J. Hopkins, ADAP Advocacy Association member from Los Angeles, CA