Thursday, June 30, 2011

Comments left by those who signed the petition sent to President Obama and Secretary Sebelius

Comments from Individuals who signed the petition:
Mr. President,
I am big supporter of yours and for the first time in my lifetime I am proud of my country and my President. Sir, I was there in San Francisco during the early 80s as this epidemic hit. I buried dozens upon dozens of friends and people because the President at the time would not even say the word “AIDS" let alone act on a devastating epidemic. I know you are better than that.
You, Sir, are a man of dignity and of character. Please make sure that funding is sustained for HIV/AIDS. If it is not, I fear another outbreak and rise in deaths. I certainly know that without education and prevention, the disease will spread like wildfire, again. I have endured the past twenty years with this disease and am now confined to a wheelchair and can only walk with severe uncontrollable pain. Please don't allow another American to go through this without help, medicine and insurance.
Thank you for your time and consideration,
Your fellow American with AIDS.
I've been without HIV medications for over six months after losing my job and health care benefits. I've qualified for ADAP funding. Please don't end my life before I have the chance to get back on my feet.
I'm signing this petition because it is one of the right things I can do toward helping save lives. Please do whatever is in your power to do the same.
But for the grace of God, go I. Please do SOMETHING SOON!! For the sake of all the others. We spend billions overseas for "Humane Reasons", so why not at home?
America is not a third-world country. Americans are actually dying as a direct result of a lack of medical treatment and medications. I beg you to please end the tyranny - yes, tyranny - of the medical insurance companies and pharmaceutical companies. Every other country in the civilized world has a government-subsidized healthcare system that is available to ALL citizens, equally. Americans are indeed dying because of our government's lack of action. Please fund drug assistance and healthcare assistance organizations fully and generously.
Americans only think of Aids as an Africa problem because that is the way that it has been approached by our media. Please make it your priority that you will be the president who will illuminate what is happening to our people in America. Please do not condemn people to death by allowing the ADAP crisis to continue.
I am 72 years old and have been living with HIV/AIDS for over 20 years. Without ADAP's help I would not in great be alive today. Please sign the bill to help others live long too. Thank you.
It's unfortunate that we will fund treatments on other continents but not within our own country! Please act now to ensure patients in Florida who can't afford these medications receive them. Thanks!
A member of my immediate family was just diagnosed with AIDS!! You have no idea what a life changing event this is until someone close to you is given this devastating news. He isn’t gay, hasn’t had blood transfusions, hasn’t been careless with multiple sex partners, in fact he has had the same girlfriend for 8 years....he is just a normal guy who doesn’t have medical insurance and is unable to work at this point. These people need help......the meds are so expensive. It is impossible for the average person to spend over 3000.00 dollars a month on medication. Treat everyone equally!!
I urge you to keep this ADAP intact as it is. Without this program, I would not be alive today.
Dear President Obama and Members of Congress,
When diagnosed with HIV/AIDS, we were self-employed in the Arts. ADAP was there to fund our medications, no doubt saved our lives slowed and the spread of this expensive horrid disease. Now as Seniors, having exhausted our savings and capital ask you to please keep ADAP and the Ryan White Care Act fully funded. Our lives depend on you.
Thank you for your attention.
This program keeps me alive on this planet and helps many people who cannot afford such medications in such a hard time and economy. Please keep this running for those like me who are struggling with work and health insurance denials!
How many unnecessary deaths have to occur before we, as a nation, begin to realize real lives being lived by real human beings are at stake here? In my humble opinion, one unnecessary death is one too many.
Want to thank you for recognizing the needs and that you do realize the severity of this disease. So much better than our last president and if Reagan would have done his job and recognized it when it was first recognized, maybe it wouldn't have gotten as bad as it has. Please do not cut any more from the ADAP program.
This is America?
Laid Off, In Foreclosure, AIDS Meds are $2000
a month; Unemployment is $240 a week. I should not have to choose between paying
my bills, or getting my Medication!
I have been poz 23 yrs now. I'm one of the lucky ones. However, I don't always have the meds I need and I know that I am not the only one that is in the same boat. Don't give up on us.
26 year survivor, let there be more like me, don't cut ADAP. Please do the right thing.
ADAP is a must needed program for individuals diagnosed with HIV and can't afford it. I live in Florida, it is a scary place to be right now, as an HIV diagnosed person. I am lucky enough i have insurance, but my boyfriend does not, and is on the waiting list. How can the US makes cuts in the program, yet we can fund and send money for the wars an floods all over the world and send medicine for HIV people in Africa, but not here in our own country? I have no doubt people are dying in this country, the USA because they are on the waiting list. How can we be "the super power" country and we are letting our own people die. I could be one of them one day, should i lose my job. This is supposedly the best country to live in, in the world, please don't let us down, Mr. President. I became infected 2.5 years ago; i am now a counselor and tester. There are so many people who have HIV in this country and don't know it. 4 out of 10 people, who have it, don't know they have it. We also need to go to teaching safe sex in schools, abstinence is not the answer. I live in Lee County and 30 14 year olds had babies last year and 2 nine year olds. HIV is targeting the black population mostly, although i am white, HIV does not discriminate. Please, please help these people.
The ADAP program is THE only reason I am still alive
People need these medications. People will die without them. Either force the pharmaceutical companies to cut costs or help fund ADAP programs. More transparency is needed by the pharmaceutical companies. The costs are too much for people with insurance, let alone without.
When our political leaders in Washington ask themselves what sorts of cuts to make ... I hope they all know that when they cut ADAP it will undoubtedly cost much more than money ... it will cost lives. For years the government and everyone else has been speaking about the importance of being "in treatment" if HIV positive. That's all well and good ... but being able to afford that treatment is another thing entirely. If the federal government does not see its way to continue full ADAP funding, people will not be able to get the medicine they need, and they will die. Let there be no doubt about that. I would suggest that any politician who wishes to cut ADAP funding be required to stand face to face with those with HIV who will not be able to get, or will lose, their access to these life-saving drugs. Only then ... if they are willing to stand there and tell them in-person that the federal government is willing to let them die ... should they vote in favor of more cuts to ADAP.
If a person with AIDS doesn't have insurance, there is no way they can afford to pay for these medications. These medications should be available to the 8,111 and growing (unfortunately) population that needs them.
This program is the only reason I am still alive. Kill it and you kill me.
Mr. President please do not let Congress cut anything for HIV or Medicare or Medicaid we are Human Being's and want to live.
We know that HIV medications save lives; not only the lives of the HIV+ people who are on HAART, but it also helps prevent further transmission by keeping viral loads low.
As someone with a loved one whose life literally depends on free medications, I cannot begin to say how much government funding for HIV/AIDS drugs has meant to my family. We literally owe his life to it! I can't imagine the agony of being on a wait-list for medications that can save your life--knowing that the treatment is there but that you cannot afford it. Please act compassionately and ensure that all who need this life-saving treatment will be able to receive it.
Without ADAP funding I cannot afford the incredibly expensive cost of Atripla.....please, I don't want to die! I have 30 days of pills left and don't know what will happen when gone.....HIV will come roaring back and if I get sick and can't work how will I pay rent, food......I'll be destitute and dying on the streets I’m just hanging on by a thread as it is.
I am an HIV Counselor who supports ADAP and other HIV/AIDS programs. In the long run, Drug Assistance and Prevention programs SAVE money by keeping people educated, and if they should contract the disease, healthier and less able to infect others as recent studies released last week suggest. We are a way off for a vaccine though trials are promising. I urge you to support ADAP and the individuals whose lives are at stake.
I am Deaf and living with HIV. Please do not take our HIV medications away. I wish to live!!!
This program keeps my partner and best friend alive...Please consider someone just deciding your loved ones were deemed ineligible for life due to preventable circumstance. Thank you!

my father passed away of AIDS august 20th 2010 and there was nothing that could have been done because of his age and the fact that his cancer came back i just know it’s not right that there are people out there that are healthy enough to live out their lives if they were able to get the right meds.
This is so important. 1.1 million people across the USA are living with HIV/AIDS, far too many are poor and un-insured. Please do everything within your power to preserve funding for HIV/AIDS patients, services, treatment, prevention and education!
ADAP monies save lives AND prevent new infections. It is the best way to prevent HIV we have. If you vote to do anything but INCREASE funding for this program (as there are serious shortfalls already), I will actively work to see to it you are not re-elected. Your party affiliation is unimportant to me. This issue goes beyond party affiliation.
Without ADAP, we go back to rampant infection and rampant deaths from HIV/AIDS. Your son or daughter will be next. It is not like it was in the 1980's when it was confined to drug abusers and homosexuals. Now it is heterosexuals leading the path of infection. There is no stopping this trend without governmental intrusion.
And for God's sake, you spend nearly a BILLION dollars a year on this program. Demand that the pharmaceutical companies to accept a 25% discount. They can afford it.
This is an outrage!!! If this is happening in Utah then other states will stop HIV/AIDS funding as well. We can't sit back and allow people to just die. It's our duty and the governments to help. We are not living in a 3rd World Country. More funding please! For GODS sake.
If we cannot yet find a cure, we need to find ways to prolong life and well-being for victims of this disease as we work toward the future where a cure will eventually is discovered and readily available. Every action helps!
I am one of the 1% at poverty level, living with mother who spends her money on me. I have depleted my accounts to try to stay alive. I have been looking for work, but to no avail. ADAP should not have any cuts to the program from either the State or Federal means!
Balancing budgets on the backs of the poor and disabled is not the way to fix the deficit. People before things! Do not eliminate ADAP waiting lists by simply making them disappear. Our community needs these lifesaving drugs to live. Where is the compassion? It's the 1980's all over again, with government letting human beings die from AIDS.
This is helps someone I love, how can you put a price or a time limit on a life that is not yours? Please help me save the ones I love so I can love a little more!
I think that the fight for those are barely able to stand up and fight for themselves is one that must not be averted. HIV/AIDS is hitting us more and more everyday. HIV doesn't sleep, why should we? We can beat this Virus and help those with it live a more natural and healthy life
Please restore full funding those living with HIV/AIDS. Our lives depend on you and your actions. Stand up and be counted as men and women of character.
Please do NOT allow the shameful way the government has treated the HIV/AIDS impacted community to continue. Not since the Regan administration completely failed to acknowledge the epidemic, has government so callously treated those living with HIV/AIDS.
Entitlement? HA! What a laugh! When your mind & body are so ravaged by the side effects of the HIV meds that you can't work, what little money we get from SSDI is gone in about 2 weeks for groceries, housing, utilities, medical co-pays & coverage (because some of us actually PAY extra to get great care from an actual Infectious Medicine Doctor). I understand conservative ideology that this is a 'gay' disease. What about the 'innocents'? Children, women of rape/abuse, poorly educated youth (thanks to GOP) & women like me whom have been living for over 25 years w/this because NO ONE educated US in High School?!!! 1st sexual contact, 1st Boyfriend. Does that mean that I should pay for my government’s ignorance towards AIDS in the 80's & now?
I know these are trying times and our economy is in bad shape but please I beg of you as a victim of HIV/HEP C co-infection to not cut the entitlement programs. I understand that many sacrifices must be made by the citizens of the U.S. but cutting our entitlement programs is the difference between life and death to so many of our people. It's a shame that we send billions of dollars to help foreign countries and cut programs here at home that mean the difference between life and death to so many people in our own country!! I think it's very honorable and good hearted to help those in need in other countries but at the same time I think that taking care of our own people should be our first priority!
Please once again I beg you not to cut these entitlement benefits and help those of us that struggle daily for own lives here at home because as I have stated in my message previously many lives of our own people will be sacrificed.
I am HIV positive and am Full Blown AIDS and my life depends on the programs funded by state and feds but seeing all the cuts being made puts my life at risk. I depend on the extra help provided by the programs!
The availability of HIV meds to the affected populations has made thousands of individuals not only live but lead more normal lives. I urge you not to cut funding that affects their ability to access these essential medications.
Although I'm not HIV+, I stand by my friends who are and who need these medications and other assistance programs. Thank you.
Please, stop cutting off our lifelines. Save our lives!

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”

Wednesday, June 22, 2011

Share your story; create a domino effect towards a world free of stigma!

Many people who are diagnosed with HIV or Hepatitis C, or ANY illness will have many questions. Today, people turn to the internet to find answers to their questions, and support. In many instances the information you find will contradict your doctor’s advice.
I have found that just some of the information I find online was something I could relate to. You will not find a one answer fits all when searching the internet for such things as "Could I HIV if..." "How will Hepatitis C treatment be?" "What are the signs and symptoms of HIV or Hepatitis C"? The list as to what you could ask and search for in Google’s search box is limitless and your search results could be in the millions!
The one site that I have found useful and that I mainly rely on is, and firsthand accounts from individual blogs and vlogs, and online support groups such as those found at,, and on Facebook; a group called "International place for people with HIV/AIDS, and the people who love us.”  Even with firsthand accounts not everyone will have the same experience as anyone else.
However, having these informational and supportive resources is invaluable, and while you may not be able to relate to everyone or find the answer you were looking for; you'll take something from each person you interact with, each article you read, each vlog  your watch,  and each response from a question you may ask in an online open forum.  More importantly you’ll form connections and emotional bonds with people from all over the World. People with one similarity; people infected or affected by HIV/AIDS or Hepatitis C.  
Your journey living with HIV/AIDS and Hepatitis C will undoubtedly be exclusive. Don’t be shy about it, tell it, share your story, rise up, stand out, and speak up about it. Telling ones story can be very powerful, liberating, and empowering to others.  Further you could create a domino effect from the beneficiaries of your story.  As more people begin to rise up and tell their story living with HIV/AIDS and Hepatitis we can work towards breaking down barriers and get closer to a World that is free of stigma about the disease.
If you would like to share your story; I would love to hear it, those who I have befriended would love to hear it, and more importantly; that person who just found out they are HIV +, or long into their diagnosis and just having a difficult time will undoubtedly love to hear it; and will be comforted in relatable aspects of your story and inspired by it.
If you’d like, e mail me your story, and I will post it on my blog.  If you would like to do a vlog entry I can feature it on my you tube channel.  I can help you tell your story, and share it with the World! I was inspired to tell my story; and hope I can inspire you.

Kevin Maloney
Twitter @RiseUpToHIV

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