The ADAP Crisis, and the Proverbial Water-Well

This morning I watched as six of 12 defenseless ducklings fell into a well, as the mother duck stood her ground and protected the other chicks from making the same mistake. The mother duck's quack became increasingly louder until residents of the apartment complex figured out what had happened, and rescued the baby chicks.

Had the mother's quack not been so loud, and had others who could come to the rescue not been around; she would have lost six of her offspring. The chicks' quacks were faint being about five feet underground, and would have eventually been silenced by their eventual death, without anyone ever knowing. That mother duck knew that inaction AND silence could equal death.

That mother duck and her chicks and the people who came to the rescue are an epitome of the ever-growing ADAP crisis occurring in our country right now. 8,310 humans are defenseless as they go untreated for their HIV/AIDS infection; defenseless because our government is not coming to the rescue to provide lifesaving medications.

Later in the day I saw the same man who came to the rescue pour green slimy water down that drain. This would have surely killed the ducklings. It's kind of representative of what states are doing to its people, by lowering the FPL, and changing other eligibility criteria; overall making it harder for people to obtain medicine and other necessary resources for survival. As we are being told in numerous state and nationally sponsored campaigns; get tested, know your status; we are also being told (if testing positive) that we cannot help you. This ADAP crisis sends the opposite message; a message of hopelessness; why get tested if I can't be treated?

Recent Research indicates that those on ARV (antiretroviral medication) are 96 percent less likely to pass the virus onto their partner). Research also indicates that starting ARV earlier in the progression of the disease helps prevent the virus from replicating to a point that significantly destroys the immune system. History tells us what untreated HIV infections can lead to; opportunistic infections, other illnesses, and DEATH. History has shown that silence = death. History has also shown that the power of voice, of action, of compassion, understanding, and care are the cornerstones of human existence.

With regard to the ADAP: voices are being displayed in public forums, through online initiatives, through teleconferences, through letter writing, and signing of petitions. Within the HIV/AIDS community we are showing compassion, care, and understanding to our friends living with HIV/AIDS. However, the "everyday" American has not caught on to the ADAP crisis, and most politicians and legislators are ill-informed, uneducated, and simply have become complacent to this issue.

What will it take? 8,000 people dying before this crisis makes the front page of The New York Times, The Washington Post, The LA Times, the San Francisco Chronicle, The Chicago Tribune, the Sun-Sentinel and other newspapers from across the country. When will it hit the national news such as CNN, MSNBC, FOX and other local news channels? When will our government step in to fix the problem? Before it's too late?

Just as the quack of the duck became increasingly louder to save her baby chicks, OUR voices must be heard and cannot be silenced; as we have seen with regard to the Arab spring; great things can be accomplished when people band together to create desired change.

We have the medicine, we have the research to show us it works, and we have the history as a reminder to all of us what can happen when this disease is silenced. History also show's us the great accomplishments that have been made by our voices, AND our actions.

We can take this moment and seize it by rising up, standing out, and speaking up about HIV/AIDS and this ADAP crisis or we can take this moment; place it in the proverbial water well; only for our actions and words to be silenced. The latter CANNOT be an option.

Until there is a cure our government MUST not re-main complacent and must make sure that EVERY American living with HIV/AIDS has access to lifesaving and life sustaining medication which keep people alive and healthy.

Will you please sign this petition and leave a comment to tell Washington and States to STOP cuts to ADAP and other HIV/AIDS services; and to instead FULLY fund these programs!

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

Sir Elton John gives Florida Governor Rick Scott the "Crocodile Rock"

"Well Crocodile Rocking is something shocking when your feet just can't keep still I never knew me a better time and I guess I never will...Oh Lawdy mama those Friday nights when Suzie wore her dresses tight and the Crocodile Rocking was out of sight"

-- Sir Elton John

Embattled Florida Governor Rick Scott (R) was put on noticed by Sir Elton John that his State's proposed eligibility changes to the AIDS Drug Assistance Program ("ADAP") - which would essentially kick up to 1,800-plus Floridians living with HIV/AIDS off the program and leave them with few treatment options - was unacceptable. John, who is the Founder of the Elton John AIDS Foundation - wrote to the governor earlier this month, pleading with him to protect the program's integrity by preserving existing eligibility guidelines.

"Given that life-saving HIV/AIDS medications can cost between $10,000 and $30,000 per year, this proposal would put these low-income individuals with HIV/AIDS in the untenable position of being completely unable to afford treatment for an incurable, communicable disease," read, in part, John's letter.

As of June 10th, there were 8,230 people living with HIV/AIDS on ADAP waiting lists in 13 states. Florida has the largest ADAP waiting list, with 3,529 Floridians living with HIV/AIDS being denied care. Health care rationing is not only fiscally short-sighted, especially with a disease such as HIV/AIDS, but it also goes against the very fabric of the American experience. Yet, it happens all too often and something needs to change!

The letter represents the first high-profile gesture of support for the cash-strapped ADAPs...something that many within the HIV/AIDS community will propel the issue to higher level of media and public scrutiny. Long ago were the days when the disease garnered national attention in the morning newspapers and evening television news broadcast. Despite a few national news stories sprinkled here and there, including a recent Op-Ed by Charles Blow in the New York Times, most of the media attention has been focused at the local level.

Now, John has taken his case directly to the public by starting an online petition, which he hopes to send to Gov. Scott. The Florida Independent first reported that the online petition was started because the governor still had not responded to his June 1st appeal.

Some might say that Sir Elton John decided to give Gov. Scott the "Crocodile Rock." As of today (June 17th), there were already 1,053 signatures on the online petition (including this author)!

The petition reads, in part:

"Dear Governor Scott:

We, the undersigned, co-sign and endorse the attached letter from Sir Elton John and David Furnish calling on you to not cut vital HIV medication access to Floridians in need."

The full text of the letter can be found here: http://goo.gl/30MXO

CLICK HERE to sign the online petition today!

Dear God, How’ve you been?

****Reprinted with permission from Christopher Myron****
The following blog is also available online at Christopher vs. HIV

Dear God,
How’ve you been? I must iterate my apologies for not writing to you sooner. However, due to the constant upheavals in my life (of which I hold you largely responsible) you must understand my reasons for not getting back to you sooner. But, don’t worry, all is forgiven, darling. It would be in terrible Christian manners for me not to forgive, don’t you agree?

Well, I’m sure you’ve been keeping up with everything that’s been happening from my end. I must say it wouldn’t have killed you to check in with me from time to time. As the universe creator and the all knowing ambassador of life, your advice on matters that sought a second look would’ve been encouraged. For instance, where were you when I was eight years old and my grandmother passed away? While you were transitioning her into new accommodations (which by the way better be first class considering she deserves it) my entire family tree fell apart. In the while, the adults of the world thought it was okay to pick on me, the quiet kid, by saying how bad I was at everything. Perhaps it was the quiet side of me that made me inept to sports and scholastics, allotting my free time to do, ya know, nothing. It’s not like I asked for anything, yet I was still labeled a spoiled brat. Is it because the one thing I ever asked for was a swing and never got it? Should I have made a fuss do you think? I must say your absence taught me to live alone in a bubble from an early age. I was comforted by shutting everyone out and changing my excessive smiles to pursed lips. Can you believe that is still the same attitude I have with most people these days? That point made me chuckle for a moment and I almost spilled my Perfect Manhattan that I’m drinking as I write this. But, like I said, all is forgiven.

Anyways, where was I? Oh yes, your abandonment. Sorry to sound like your mother, I’m sure. I thought my childhood and adolescent years would be the worst of it all. Well, was I wrong! Maybe I’ll let you be the judge.

Darling, did you hear I became a homosexual? Or, as the less educated population calls it, “a faggot?” Boy, what an experience it’s been! Thank goodness you approve and love homosexuals because people here sure don’t, especially the people who think they know how to interpret the Bible. Can you believe they won’t let us marry? What terrible manners. I bet you didn’t see that coming when you created HIV. Did you think when the first reported cases that were directed towards gay men that the world as we know it would sympathize? Which reminds me, give my best to the millions of men and women who are no longer here because of HIV, including my Uncle George.

I shouldn’t be so dramatic about everything because I did let HIV in my bubble. No doubt you heard that we’re involved? I bet you heard the news through the grapevine that I’m with HIV? Don’t worry; nothing to get bent out of shape over. HIV and I grew a lasting relationship over the past year and a half: I know where to find him if I need him and he leaves me alone, for now. We check in with each other about every three or so months, which is more than I can say of you, but I digress. Meanwhile, most of the homosexual community won’t talk to me because I’m with HIV. Whodathunkit?

Thank goodness you couldn’t be here in the days I hated being gay in a world that hates me for being gay. I had a fabulous time with the gentleman (which one it was strikes my memory at the moment) that inserted his tainted sperm in me. If not for him I would have never met HIV. It’s dashing, really. He opened up my circle of friends. In fact, I see my best friends, Atripla and Isentress at least twice a day, now. They have quite expensive tastes and eat me out of house and home, but I don't have the heart to say no to them. They send their love and gratitude for introducing us.

Sometimes I wonder if you hate me, but I’m just talking crazy. Right? I’d say “LOL” to you, but it would appear you’ve been missing from the world for so long that you’d have no idea what that means? Oh, you old fogy! Or should I assume that you possibly have kept up with the times after all and just abandoned me?

But, let me be serious for a moment and confess something to you, darling. I do have regrets and abandonment issues of my own. Since I’ve met HIV I’ve recently abandoned all the selfless men and women fighting to stop the spread of HIV. Yes, HIV is cheating on me with millions of people out there, but I let it happen. I, too, have been so focused on me that I forgot how important each and every one of them is to me. I just hope they know. Any advice for me considering you’re well versed in abandoning those in need?

Well I should wrap this rampant letter up, darling. I could only imagine all the other depressed and lonely people you need to attend to (or ignore) these days. I’d end with saying, “looking forward to your reply letter,” but I know how terribly busy you are being God and all. So until next time we coerce I’ll be holding down the fort on this cruel and unforgiving world you tossed me on.

Hugs and kisses,

Christopher

Only Self-Advocates Can End the ADAP Waiting List Crisis

Ask anyone who currently works or who has worked on Capitol Hill and their answer will be the same. Constituents matter! In the 1978 groundbreaking analysis, Home Style: House Members in their Districts, political scientist Richard Fenno demonstrated the importance of various constituencies within a congressional district and how they impact Members of Congress. That is where former Speaker of the U.S. House of Representatives, Tip O'Neil got it right: All politics is local.

High-powered lobbyists are important. Clearly, advocates representing national organizations are important. But no single group is more important than the constituents residing in a Member of Congress' district, or state. In 2006, 2008 and 2010, there were three consecutive "change" elections, and many political pundits are predicting that 2012 just might be another. And that's why people effected by and affected by HIV/AIDS need to reserve their respective seats at the table. It’s about building relationships, solidifying constituencies, and influencing key decision-makers in Washington, D.C.

The ADAP Advocacy Association's 4th Annual Conference - being held in Washington, DC on July 5-7th - represents one, among many, opportunities for people living with HIV/AIDS to become more involved in the process. Members of Congress and their professional staffs would much rather speak directly to their constituents than "playing nice" with DC-based professionals. The conference theme, When will Washington come to the rescue?, was intentionally named as such because it highlights one of the biggest drivers behind the ongoing crisis facing the AIDS Drug Assistance Programs: lack of federal funding. Keep in mind, federal funding as a percentage for ADAP decreased from 72% in 2005 to 49% in 2010.

In essence, aaa+ understands that the ADAP crisis isn't about politicians, or pharmaceutical companies, or community AIDS Service Organizations - in fact, it isn't even about the funding itself. Rather, it is about the very people living with HIV/AIDS living in the United States who rely on the program to remain healthy, productive residents in their communities back home. What aaa+ hopes to accomplish with its 4th Annual Conference - and other programs - is to create an army of self-advocates who can end the ADAP waiting lists. After all, it is back home where they can most influence the decisions that adversely impact their daily lives.

Used in this context, self advocates can be defined as people living with HIV/AIDS, acting or speaking on issues that affect them or other people living with HIV/AIDS. Said another way, self advocates are people that communicate on behalf of themselves and others like themselves. Self advocacy has four integrated parts:

Strong self advocates are speaking up and speaking out

Community integration by participating in the community

Being part of a group to find support

Everyday opportunities and the expectation to be self advocates

In preparation for conference, all ADAP stakeholders - but especially people living with HIV/AIDS - are invited to learn more and hopefully participate. The agenda is available online, as well as the registration form (if you're a pharmaceutical company representative, click here). For those ADAP stakeholders seeking a detail explanation of why the conference is focused on the federal appropriations, please review the conference summary.

AIDS Drugs Take Backseat to Shrimp & Jell-O

As of today, there were 8,310 people living with HIV/AIDS in the United States on waiting list under the AIDS Drug Assistance Program, according to the National Alliance of State & Territorial AIDS Directors. Additionally, there are thousands more who have been adversely impacted by other "cost containment" measures at the state level restricting eligibility (aka, kicked off ADAP). One of the biggest reasons why the ADAP crisis has unfolded over the last two years has been insufficient federal funding, whereby the federal commitment has dropped from 74% of programmatic expenditures in 2005 to 49% in 2010. Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous "pet projects" - including "such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation" (Washington Times, 05/26/11).

According to a new Senate report requested by Sen. Tom Coburn (R-OK), over $3 billion was mismanaged by the NSF. That's billion with a "B". Meanwhile, HIV/AIDS advocates were requesting a paltry $126 million from the federal government last year to help alleviate the growing ADAP waiting lists. While Sen. Coburn has not always earned favor from the HIV/AIDS community, there have been other times when, as one of the Senate's only two licensed medical physicians, he has provided unquestionable leadership (including being an original co-sponsor of S.3401, which would have used unobligated stimulus funding to eliminate the ADAP waiting lists).

It has already been documented how the President's stimulus law funded countless of non-essential programs (Read: Mr. President, please “stimulate” the AIDS Drug Assistance Programs), yet the administration opposed using those same dollars to help the ADAP crisis. The Democratic-controlled Congress did little to nothing from 2009-2010 to help ADAP waiting list patients. And now, despite a small increase for ADAPs in the Fiscal Year 2010 federal appropriations law, Republicans in the House of Representatives are proposing to dismantle many of the safety-net programs designed to help people living with HIV/AIDS.

It begs the question, where is the leadership?

It is absurd to think that in the wealthiest nation on Earth, people living with HIV/AIDS are being forced to go without their life-saving medications, but $3 billion can be wasted on shrimp exercising and Jell-O wrestling, among other things. Make no mistake about it, BOTH political parties are to blame for funding these projects. Until the HIV/AIDS community in general, and specifically ADAP stakeholders rise up and demand accountability and funding for proven programs such as ADAP, we will continue to see more and more people living with HIV/AIDS pushed aside onto waiting lists.

2011 Annual ADAP Leadership Awards

There comes a time when reflection is necessary, especially during the most challenging times. To characterize the last two years as "challenging" for people living with HIV/AIDS - including those patients who rely on accessing treatment under the AIDS Drug Assistance Programs ("ADAPs") - would be an understatement, to say the least. Funding cuts...waiting lists...eligibility changes...and even death have reminded the HIV/AIDS community of the serious challenges they faced during the 1980s and early 1990s. Yet, they persevere and continue to fight and "act up" to protect their lives.

The ADAP Advocacy Association (aaa+) contends that ADAP has long embodied what successful HIV/AIDS programs should look like, not only because ADAP keeps people living with HIV/AIDS healthy, productive members of their communities, but also because ADAP represents a strong public health 'Return on Investment' to the taxpayers.” In light of the escalating ADAP crisis, aaa+ feels that it is important to step back and reflect on the good work being done on ADAP by so many leaders - especially since during times like these it is often easy to focus on the crisis itself.

With that in mind, on May 11th a call for nominations was issued for the aaa+ 2011 Annual ADAP Leadership Awards, which will recognize individual, community, government and corporate leaders who are working to improve access to care and treatment under the AIDS Drug Assistance Programs.

A Call for Nominations has been issued for the following awards:

• ADAP Champion of the Year (individual)

• ADAP Emerging Leader of the Year (individual)

• ADAP Corporate Partner of the Year

• ADAP Community Organization of the Year

• ADAP Lawmaker of the Year

• ADAP Social Media Campaign of the Year

• ADAP Grassroots Campaign of the Year

• ADAP Media Story of the Year


The awards will be presented during the 1st Annual ADAP Leadership Awards Dinner, being hosted by aaa+ on Wednesday, July 6th at 7:00 pm in Washington, DC. The dinner will be held in conjunction with its 4th Annual Conference, being held at the Westin Washington DC City Center on July 5-7th. Jeffrey Lewis, President & CEO of the Heinz Family Philanthropies will be the keynote speaker.

Clearly these awards won't eliminate the ADAP waiting lists, or restore much-needed fundings. But, what they will demonstrate is that the advocacy and activism does make a meaningful difference in the lives of people living with HIV/AIDS, further reminding all of us why we're in this fight TOGETHER!

Losing Access to ADAP: What It Means to be HIV-Positive

Checklists. Every individual and organization has one in some sort of fashion, including the U.S. government. Whether they are logged into memory or jotted on paper it lists tasks to be completed usually in a specific priority. At some point or another everyone has endured that feeling of accomplishment when one of these “To Do’s” has been fulfilled and crossed off the list. This week in America the government proved to its people that they could cross off a task in their own agenda by killing Osama bin Laden. The next task that the government should surge their efforts towards in the interest of its citizens here at home: addressing the ongoing AIDS Drug Assistance Program (“ADAP”) crisis and how the number of patients losing access to this much needed program is not only rising, but getting fiscally worse. It must be illustrated to those [with the power to solve this problem] on what it means to be HIV positive today and the consequences of ignoring this issue will result in a financial burden on all Americans.

Doctors, therapists and social workers endlessly explain to the HIV patient that exercise, a well-balanced diet, and a stress-free environment are not only beneficial, but also vital for keeping the virus from developing internally and taking over. Of course, none of these variables are possible unless the patient adheres to the life-saving medications that allow them to be productive in their lives and keeps them from a hospital bed. And up until the recent years even with new infections the fatality rate from AIDS-related complications has significantly decreased. Applause for this breakthrough goes not only towards the medications that have been discovered to keep HIV-positive individuals healthy, but most importantly to the Federal and State government-funded program, ADAP through Part B of the Ryan White Care Act. Without this program, some speculate that HIV/AIDS would triumph as the leading cause of death in the country. For thousands upon thousands of HIV-positive individuals nationwide this “payer of last resort” is the only access they have to receiving the medications and medical care needed for ongoing sustainment as well as preventing the spread of the virus to non-infected people.

With that said, there is a shared anxiety in the HIV/AIDS community at the fact that this program is in jeopardy beyond extreme measures. Although the community is grateful that the President has ordered an additional emergency $25M in funds to Ryan White in FY2010 and its been further ordered for the continuation of some funds in the FY2011 budget (when so many programs have been cut in other committees) it must be pleaded that it isn’t enough to keep ADAPs afloat for another year. The continuation of insufficient funding for this program will not only definitively throw more HIV-positive individuals on waiting lists in the most obvious manner (7,674 in 11 states as of 4/22/11) but more individuals will be rejected altogether. Sadly, it doesn’t stop there: Eleven states with waiting lists will soon turn to 20, or 30, and soon all states and U.S. Territories will fall into this trap. Will this problem be addressed then?

With an unstable economy still at large many Americans, especially HIV-positive individuals, find themselves working two jobs in an attempt to pay the bills and get ahead. One job has no insurance and the other job has an insurance plan that doesn’t cover the HIV medical necessities. An individual that fits this example will most likely not qualify for ADAP even if they make only $500 over the eligibility limits in their state. Consequently, two-thirds of their salaries go towards monthly prescriptions and medical costs. The remaining few extra dollars at the end of the week doesn’t always cover the rent, food and bills. Sooner or later a definite choice will have to be made as to what’s more of a priority to pay for- the roof over their head or for groceries or for another month’s supply of medications and overdue blood work. In other words, ending up on the streets, starving or allowing the virus to strengthen, spread within and onto others and ultimately take over both physically and financially for all? Let’s not forget the rising stress levels from working two jobs under the influence of a compromised immune system. In this lose-lose scenario the individual’s health deteriorates because of no exercise, poor diet and high stress. The only hope for this individual is to be accepted to the ADAP program - with a price to pay by giving up one job and slashing their income by more than half. At least in this case this person’s HIV medicine, blood work, and doctor visits (all covered by Ryan White programs) will be covered. But, what happens when they are thrown off the program because the State had run out of funds? Out comes the virus from its hideout ready to take on more victims and dollars from the taxpayers.

Finally, if all the recent talk about lowering the Federal Poverty Level (“FPL”) for the ADAP program in some states gets approved then the result sets HIV-positive individuals in danger of still making too much money- even on one salary. There is no question these people, who so desperately need the help, will get kicked off the ADAP program for sure. To utter it once more- poor diet, lack of exercise, increase in stress level, and hardly clinging on to what pills are left in the pill box- will the virus take over? The answer is YES, without question or argument. Thousands of Americans are victims to this and thousands more are already in danger of falling into this category under the same foreshadowing issue. Scarily, these “thousands” will turn to millions in the coming years if this topic is not addressed. Is that what it will take for the government to understand that HIV/ AIDS and the ADAP Program under Ryan White are once again situations that cannot continue to be overlooked?

This is a true story of what it’s like to be HIV-positive in this day in age. One can only pray that all the wonderful testimonies about how healthy individuals have become thanks to the progress in medications and treatment will not become a story of the past. When diagnosed with HIV its assured by so many that a full life expectancy is imminent. That may no longer be the case.

Access to ADAP is the treatment livelihood for countless Americans living with HIV/AIDS, and it needs to be a top public health priority in the government. “Fighting to survive” should never be on any HIV-positive person’s checklist in this day in age.

Blog by Christopher Myron, ADAP Advocacy Association member from New York City