Thursday, June 30, 2011

Petition letter to President Obama and Secretary Sebelius regarding the ADAP crisis

P.O. Box 1398
Clifton Park, NY 12065

For Immediate Release....

June 30th, 2011

President Barack Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Honorable Kathleen Sebelius
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

RE: Emergency Funding for AIDS Drug Assistance Programs is urgently needed to prevent needless deaths

Dear Mr. President and Secretary Sebelius,  
I write to you today as a fellow American, and on behalf of 1.2 million Americans living with HIV/AIDS.  On the 30th year of the AIDS epidemic our country is facing a perilous time in the fight against HIV/AIDS, and a growing public health crisis, unseen since the epidemic began.  The weak economy is crippling state and federal budgets that pay into ADAP; the government program that provides life-sustaining antiretroviral drugs to people with HIV/AIDS who cannot afford them.  Without reliable access to the medications, which cost patients in the AIDS Drug Assistance Program an average of $12,000-$15,000 a year, people with HIV are more likely to develop full-blown AIDS, transmit the virus and require expensive hospitalizations.  Mr. President, your intervention along with Congress is needed to avert countless and needless American deaths. 
Right now 8,506 individuals in 13 states have people waiting to receive these lifesaving medications (in June 2009, 99 people were on a waitlist).  Further many states have employed cost containment strategies, such as reduced formularies, lowered eligibility levels, client cost sharing, or program enrollment caps.  These strategies have dis-enrolled individuals who would have previously qualified (ref:  In many states, there is a sense of reverting to the 1980s and early 1990s, before the development of protease inhibitors that reversed the rise in AIDS deaths. 
Earlier in the year CDC guidelines were changed suggesting those newly infected begin treatment earlier, rather than later. Further, On May 12th, 2011 the University of North Carolina at Chapel Hill led an international study that shows early treatment with antiretroviral therapy prevents HIV transmission. The result of the study was that those taking ARV were 96 percent less likely to pass on the disease than those who didn’t take ARV.  This critical new finding convincingly demonstrates that early treatment of infected individuals can have a major impact on the spread of the epidemic.
As we are being told in national, state, and local campaigns to get tested and to know our status; in the same breath, those testing positive are being told they cannot be helped. People are sent away with their name on a wait-list to receive antiretroviral medicine, and HOPING they will be called. These are Americans with no insurance or inadequate insurance that cannot afford the highly expensive drugs.
This crisis is creating an uncomfortable climate for people living with HIV/AIDS, and particularly for those newly diagnosed. Can you imagine being told to wait, all the while knowing your immune system is weakening?  Unfortunately, as this crisis continues to grow more people will be waiting.  If full funding for ADAP and other vital HIV/AIDS services is not restored then I fear a flashback to the 80’s; people dying.   This time, not because we have no medicine to treat the disease, but because we don’t have the funding to do so. 
We must not forget the history of HIV/AIDS and how in the 80’s our government did nothing to recognize the problem.  It wasn’t until individuals, while watching dozens upon dozens of friends and loved ones die, and they themselves on the brink of death that a movement began to recognize AIDS and to demand treatment and services for those infected. 
Many activists and particularly Ryan White paved the way for those of us LIVING with HIV/AIDS and today the Ryan White legacy is being threatened.  Mr. President, I watched as you re-authorized the Ryan White care act on October 30th, 2009. I then watched on July 14th, 2010 when you talked about the National HIV/AIDS strategy (a speech that spoke to me profoundly).  I listened encouraged, hopeful, and with enthusiasm.  The strategy set goals of reducing new infections by 25 percent over the next five years; getting treatment for 85 percent of patients within three months of their diagnosis; and increasing education about the virus, even in communities with low rates of infection.  You said you were committed to focusing the public's attention on ending the domestic HIV epidemic.  
Mr. President, without urgent action on behalf of your administration and congress we will not meet the above goals. Action is needed now in order to avert deaths, and a public health calamity with widening health disparities in communities across the country who are most impacted by the HIV/AIDS epidemic.  I and the nearly 2,000 others who have signed this petition ask that your administration work together with congress to re-double efforts in order to live up to your commitments set forth in the re-authorizing of the Ryan White Care act and speaking on the implementation of the National HIV/AIDS strategy.
Personally, I am one of 1.2 million American’s LIVING with HIV.  In March 2010 I was dual diagnosed with HIV and the least curable strain of Hepatitis C (non IDU).  Because of my early detection of both illnesses I was able to successfully complete Hepatitis C treatment, and have cured my Hepatitis C.  I went on meds for my HIV early, and have been undetectable 2 months into starting my medication, still am and feel very healthy. After taking some time to process my diagnoses I created a blog and vlog to share my experience, strength and hope LIVING with HIV. 
As I write you this letter I am in the midst of looking for work within the field of HIV/AIDS.  I am also looking to build on my bachelor’s degree in Health Services management with a Master’s degree in Social Work.  All the while, helping my Mother who is in the end stage of COPD and awaiting a lung transplant at New York Presbyterian Hospital in NYC.   I am fortunate that my states ADAP program is solvent. I depend on my states ADAP (AIDS drug Assistance Program) which picks up the tab for my HIV medications, until I find another job with benefits.  If it were not for the ADAP program I probably would be too sick to look for another job and to help care for my ill mother, and probably too ill to want to further my education, and pursue my dreams.  The medicine keeps me alive and healthy. 
Until we have a cure I will continue to further educate myself and others about HIV/AIDS and Hepatitis C, bring awareness to these diseases, encourage people to get tested, and continually show my face, and share my story to help reduce stigma. Even more I will continue to be an advocate in the fight against HIV/AIDS. 
Four generations have been touched by HIV/AIDS, and I know we share the same hope. The hope that one day soon we will find a cure for HIV/AIDS and that our fifth generation will grow up in a world free of HIV/AIDS, and that these acronyms will be written into history. Until there is a cure we must make sure every American living with HIV/AIDS has access to life saving medications!
I want to thank you for taking the time to read my letter, to review the nearly 2,000 signatures, and to take a look at the personal comments that people have left on the petition.  I and those who have signed look forward to seeing an urgent and positive response to the growing ADAP crisis.

Respectfully yours,

Kevin Maloney
twitter @RiseUpToHIV

“Voices of unity strengthening community”

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