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HIV/AIDS Blog Central

Major Opinion on Major HIV/AIDS Crisis

By Elizabeth Lombino

May 16, 2011

In a breath of fresh air, The New York Times Op/Ed writer Charles M. Blow provides a well-rounded, well-researched, and thought-provoking commentary on the need for our government to pay more attention to the ADAP Crisis.

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AIDS Drug Assistance Programs (ADAP) provide financial assistance to low-income people living with HIV/AIDS in paying for their critical and life-saving medications. As HIV meds continue to be incredibly expensive, more and more people are seeking financial assistance. Unfortunately, states across the country continue to cut funding to this valuable program, thereby denying these crucial medications to thousands of people living with HIV/AIDS.

HIV medications are necessary to treat and manage HIV/AIDS and to prevent disease progression. These medications are necessary to keep a person living with HIV/AIDS alive. Indeed, they are the very reason HIV is now a chronic disease, and not acutely life-threatening. Yet with cuts in funding, and other limitations to access to the medications, many HIV-positive people will no doubt experience a sharp decline in their health. HIV/AIDS will become a seriously life-threatening disease.

This is all unnecessary and preventable. As The New York Times article makes clear from the start, "treatment as prevention." The piece highlights recent research that found that HIV-positive individuals who were on antiretroviral medications from the time of their diagnosis (early treatment) were 96 percent less likely to pass on the disease than those who were not on early treatment. This is huge news in the world of HIV/AIDS for two reasons:

  1. Early treatment is essential in effectively preserving the health of an HIV-positive person, and
  2. Early treatment can also help prevent further spread of HIV.

As ADAPs across the country cut their funding and change their criteria for eligibility, this research shows that to continue to cut funding to ADAPs is doing a huge disservice to those living with HIV/AIDS and to HIV prevention efforts.

This is an issue close to my heart. I've been writing and advocating around the ADAP Crisis for months now. States continue to underfund their programs and enact longer waiting lists. Some states are revamping the criteria for eligibility for the program (including indicating that a person's immune system needs to be further compromised before financial assistance can be provided, shifting the income level that would indicate a person's need for assistance, and other program cost-containment strategies) thereby cutting more and more people from the program altogether.

In addition, pharmaceutical companies almost universally ignore the pleas to lower the cost of these insanely expensive medications. Here's a striking example of the cost disparity for HIV/AIDS medications: one newer medication by Merck, called Isentress, can cost over $13,000 a year. By comparison, the popular cholesterol-lowering drug Lipitor costs around $2 per day, or $730 a year. Seriously?

For The New York Times to publish an Op/Ed on this issue is huge. Blow clearly did his research and highlights many of the bleak statistics and outcomes of underfunding ADAPs. He is firm and persuasive in his writing. Exactly the type of commentary needed to raise awareness. In the 30-year history of HIV/AIDS, there have been incredible advancements in treatments. Now, HIV is a chronic disease. People can live long, healthy lives with HIV... when they are on a consistent, specific and life-long medication regimen. People can still die from complications related to HIV disease progression if they are not on a medication regimen.

Blow's point that many of those who need assistance are those who are some of our most disenfranchised members of society cannot be glossed over. Many of the HIV-positive patients who are cut from ADAPs are those with little to no political power or financial resources. Our nation's financial climate is not improving and as such, many of the most vulnerable residents are the ones who will suffer the consequences. In addition, many of these people are stigmatized and disenfranchised for multiple reasons: for being HIV positive, for living in poverty, for being a person of color, for being gay. Historically, these are the populations most often ignored and marginalized by our nation. The ADAP Crisis encompasses this and as such, it too has been ignored.

Blow writes: "Not only is it morally reprehensible to restrict or deny life-saving drugs to those who need them (talk about death panels), it is a colossal miscalculation of public health policy, not to mention fiscally irresponsible."

If our nation continues to treat people living with HIV/AIDS in this way, we will no doubt repeat the mistakes of the epidemic early on. We will see a resurgence in the spread of HIV. People will not seek testing as they will fear the implications of a positive result. There is already intense fear and stigma attached to an HIV-positive diagnosis. When we add lack of support, financial burden, lack of treatment, further stigma and discrimination, HIV/AIDS will become silent once again. As we all learned from the early years of the epidemic: silence = death.

We all need to do our part to ensure HIV/AIDS does not go silent again. Let's hope Congress is listening.

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See Also
Treating HIV-Infected People With Antiretrovirals Reduces Transmission to Partners by 96%, Study Finds
HPTN 052 Results -- Another Win for Early HIV Therapy
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More Viewpoints on U.S. ADAP Funding

Reader Comments:

Comment by: Robert (Miami) Sat., May. 21, 2011 at 10:41 am EDT
MEDICATION SAVES LIVES! An HIV positive person today can expect to live a normal life span IF they can get access to the medication. Right now Florida caps income levels at around $32K. That's nothing. Add to that the fact that, unless you get group insurance from a big employer, your going to find it near impossible to get insurance. That's a whopping $20,000 in medicine.
I wish there was a way to convince the drug manufacturers to not be so greedy. People's lives are at stake here. Just lowering the cost in half would still give them ample profits and yet allow more people to afford it.
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Replies to this comment:
Comment by: Elizabeth Lombino Wed., May. 25, 2011 at 10:13 am EDT
Thank you for your heart-felt comments, Robert. You bring up some very valid points. And Florida is at the heart of this battle with the longest ADAP waiting list in the nation and more restrictions (those you mention, and others). We'll keep speaking out and fighting until the necessary changes are made.


Comment by: John-Manuel Andriote (Norwich, CT) Thu., May. 19, 2011 at 1:19 pm EDT
"Charity begins at home." It's an old saying because its truth has been handed down for generations. It is wrong on so many levels that more than 7,000 Americans languish on ADAP waiting lists for medication that will (1) save their lives and (2) prevent them from transmitting HIV to others--while the U.S. put more than 72,000 additional Ugandans on antiretrovirals. Preventing the spread of HIV in the U.S. by offering treatment (paying for it out of public funds, as needed) to everyone who needs it--as Brazil does--would be the best investment of federal prevention AND treatment funding in stemming the epidemic.
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Replies to this comment:
Comment by: Elizabeth Lombino Thu., May. 19, 2011 at 5:21 pm EDT
Thanks for your commentary, John-Manuel. You add many thought-provoking points to the conversation.


Comment by: Mike (Atlanta) Thu., May. 19, 2011 at 12:49 pm EDT
I was lucky enough to get ADAP for a short period of time while I was out of work. it was a lifesaver because my medication (Atripla) is something like $1,700 a month. I guess what bothers me the most is the aid that goes to foreign countries (very glad that we do it) and their very low cost of medication as compared to the thousands who are on waiting lists here. If we cut the costs of the meds, even in half, there would be plenty of money to get people off the lists and and at least get them the basic care. It is just crazy. Glad the gov helps the 3rd world countries, but there are many people domestically who need help also
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Comment by: Elizabeth Lombino Thu., May. 19, 2011 at 3:13 pm EDT
Thank you so much for sharing your story, Mike. Your words are echoed by countless people around the country. Working together, we can and will make necessary changes.


Comment by: Brad Thu., May. 19, 2011 at 12:46 pm EDT
Thanks Elizabeth. I've been sitting in on ADAP steering comittee meetings for awhile now. I'd finally had enough and asked why if the Pharmacies are getting lower payment and Dr's are getting lower payment, why can't the drug companies kick in some money to keep ADAP solvent. Silence, then nervous laughter, then next point of order. I won't even go in to how much less it costs to treat in other countries than here with the same drugs. I get tired but articles like this give me a little hope.
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Comment by: Elizabeth Lombino Thu., May. 19, 2011 at 3:12 pm EDT
Thanks for sharing your insight, Brad. It's so true that the medications can be provided in this country at a lower cost like they are internationally. We could write a ton of posts on that! And yes, we must hold onto hope.


Comment by: Trish S. (Kansas City, MO) Tue., May. 17, 2011 at 6:21 pm EDT
Excellent reporting. What I'm having a hard time understanding is how the government plans to implement the National AIDS Strategy by expecting to test more people, get them into care should they test HIV-positive & then urging them to start ARVs at the same time that the State ADAPs are tossing people aside on a daily basis? Just doesn't make sense. I do hope Congress is paying close attention, and it is up to the HIV-positive community to become even louder & stronger to make sure our lives are not sacrificed. A sad state of affairs we are finding ourselves in, and history sure to repeat itself in terms of people dying. :-(
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Replies to this comment:
Comment by: Elizabeth Lombino Thu., May. 19, 2011 at 9:07 am EDT
Thanks for your insightful comments, Trish. Yes, you are correct that there is a push for testing, yet then cuts in funding to assist those who test positive. It is a complete contradiction. With continued discussions and commentary, hopefully the necessary changes will be made!


Comment by: Kevin Maloney (New York ) Mon., May. 16, 2011 at 5:14 pm EDT
Great Article Elizabeth! The news last week from the UNC at Chapel Hill coupled with Blow's Oped could not have highlighted the cause to fully fund ADAP any better. And, give's activists like you and I, and orgranizations clout as we push forward with initiatives to raise awareness around this crisis and the need for FULLY funding ADAP and other HIV/AIDS programs across the country! If you want to voice your opinion you can sign the below petition which to date has 1025 signatures of support. Thanks for a great article!

Petition:
http://www.change.org/petitions/tell-washington-to-fully-fund-adap-and-other-hivaids-programs-to-prevent-needless-and-costly-deaths

Kevin Maloney
Founder: RiseUpToHIV
"Voices in unity strengthening community"
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Replies to this comment:
Comment by: Elizabeth Lombino Mon., May. 16, 2011 at 8:22 pm EDT
Kevin ~ Thanks so much for your kind words and thoughtful comments! Yes, working together we can raise awareness and get the assistance needed. Congrats on the progress of your petition.


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Elizabeth Lombino

Elizabeth Lombino

As a Social Worker, I have been providing mental health treatment to HIV-positive adults for over 10 years. I received my master's in Social Work from Columbia University. Also, I write about HIV/AIDS advocacy and present at national conferences on the issues related to HIV/AIDS to professionals and students. Through writing and presenting, I can better advocate for the issues that I see with my clients every day. Living with HIV/AIDS can be a daily struggle with many unique challenges. My goal with this blog is to provide a sort of cyber therapy space for you to learn some skills and tools to better cope with these challenges. Hopefully you will gain confidence and look at life in new ways. Through humor, hope, sarcasm, education, and other therapeutic tools, let me help you live a happier life! So sit back, relax, and let's start relieving some stress!

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