Major Opinion on Major HIV/AIDS Crisis

Originally published on TheBody.com ~ Spread Hope: A Therapist’s Guide to Living & Laughing with HIV/AIDS 

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.

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+ 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+ 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+ 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 for 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 patients from the program all together.

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.

To read the piece on TheBody.com, click here.  

USAID Continues Funding HIV-Criminalization in Africa

Post originally published on Change.org

Funding by the United States for HIV-Criminalization continues in Africa.

In Africa, HIV criminalization is rampant and supported by many country officials. Ugandan parliamentarians submitted a bill last year that would make HIV criminalization a law. It has been revealed that U.S. efforts are providing funding to similar HIV criminalization efforts across Africa.

The U.S. Agency for International Development (USAID) has been financing the Action for West Africa Region HIV-AIDS program (AWARE), which has been instrumental in creating and enforcing more aggressive HIV/AIDS policies across Africa. This has translated into developing a “model” HIV-specific criminal law. USAID has been funding these efforts since 2004. Prior to this effort, there were no HIV criminalization laws in any country in Africa. Now, there are at least 27 African countries with active laws.

Housing Works reports that at the time of the release of this news, Robert Clay, the director of USAID’s Office of HIV/AIDS, told them “the U.S. government opposes laws that criminalize HIV non-disclosure.”

As a strong and powerful HIV/AIDS advocate, Housing Works was “curious about this contradiction” and they “asked Clay to provide more information on the federal government’s stance on the criminalization of HIV.”

Robert Clay was up to the challenge and subsequently wrote a piece published on USAID’s Impact Blog. In his response, Clay uses the words “stigma” and “discrimination” ad naseum, yet he seems to be talking around these issues as opposed to addressing them head on. He does not make any connection between stigma and the HIV-Criminalization laws. In fact, he does not directly address HIV-Criminalization at any point in the piece.

Instead, he makes several general, sweeping statements about combating stigma, like this one: “All of us who work on global AIDS issues are aware of the negative impacts of stigma and discrimination, and are committed to creating equal access to quality care and services for those living with HIV worldwide.”

This is certainly a positive stance shared by most of us advocating for HIV/AIDS awareness. Yet it is more of a political statement that doesn’t provide any specific strategies or address any specific concerns beyond affirming a broad philosophy.

To this reader, Robert Clay and USAID seem to be raising more questions rather than providing any answers.

This is Housing Works’ response to the blog: “Unfortunately, his response fails to clarify USAID’s position on laws that prosecute HIV non-disclosure. In fact, the words ‘criminal’ and ‘law’ never even appear in the response. Nor does his post provide any concrete examples of programs that combat HIV criminalization.”

Sean Strub, senior advisor to the Center for HIV Law and Policy’s Positive Justice Project, also provided Housing Works with a strong reaction. “The statement provided sounds like cowardly bureaucratese for ‘We’re not touching that with a ten foot pole.’ Where’s the [USAID] funding for a conference on how dangerous these statutes are, how profoundly they drive stigma, [a conference] providing resources for combating and overturning them? When will that conference be held, funded by USAID?”

The politics, HIV-Criminalization laws, and US funding continues. Please join us in telling USAID that this has to stop now. Sign our petition and share it with your network.

To read the post on Change.org, click here.

Progress! Pharma Decreases Cost of HIV Medication

Post originally published on Change.org

This cause has been reporting on the ADAP Crisis for months now and most of the news we have shared has been bleak. Today we have some encouraging news.

AIDS Drug Assistance Programs (ADAP) provide vital assistance to HIV-positive individuals who cannot afford the the incredibly expensive medications needed to treat and manage this devastating disease. Without these essential medications, a person’s HIV disease is more likely to progress to AIDS. HIV/AIDS can be life-threatening without these medications.

As of April 21, the waiting list for ADAP is at 7,674 people in 11 states. (The number was 5,100 in 10 states when we first began reporting about the ADAP Crisis in January.) These individuals are being denied coverage for their life-saving medications due to budget cuts on the federal and state levels. They are now at an even greater risk of seeing a drastic decline in their health while they wait for their medications.

Now for the encouraging news: one top pharmaceutical company, Abbott Laboratories, has made the decision to lower the cost of their popular HIV/AIDS medication, Kaletra. More specifically, Abbott indicated that the price reduction would be for those patients on ADAP.

The Chicago Tribune reports that Abbott Chair Miles White indicated that they have “not raised the price of Kaletra since 2007, while some companies have increased prices on their AIDS drugs 5 to 6 percent annually.” We recently reported that one such company, Gilead Sciences, made the decision to raise the prices of their top HIV medications. The cost of Atripla went up by 5.1 percent. Truvada and Emtirva went up by 7.9 percent. All of these medications also experienced increases within the last two years.

This is a move in the right direction by a major pharmaceutical company. Recently, AIDS Healthcare Foundation (AHF) called for top pharma to decrease the prices of their medications to assist with the ADAP crisis. Several major Pharma companies have not acted on this recommendation. It is refreshing for some positive news regarding this crisis from a top company.

Hopefully more Pharma companies will follow the lead of Abbott. We have two petitions urging Pharma to reduce the cost of their HIV/AIDS medications. Please take a moment to voice your demands to Merck  and Gilead. There is still a ton of work to be done to fight the ADAP Crisis. This is one step in the right direction.

To read the post on Change.org, click here.

Progress in Gainesville Meal-Limit

Post originally published on Change.org

Success! Gainesville Meal Limit on the Way to Change

It has taken some time, but after close to 8,000 of you signed the petition, Gainesville officials are finally listening!

As we have written, Gainesville officials have enforced a meal limit ordinance to area soup kitchens. The rule states that soup kitchens can provide meals to only 130 people each day. If you are number 131, you do not eat that day. No exceptions.

We also wrote that Kent Vann, Executive Director of the St. Francis House soup kitchen at the heart of this debate, recently made an appeal to officials. His goal was to change the wording of the ordinance to reflect a limit on the time the soup kitchen can serve food, not a limit on number of people.

It looks like Mr. Vann’s creative activism has proven successful!

The Gainesville City Plan Board recently voted unanimously to change the limit to reflect Mr. Vann’s suggestion of a 3-hour time limit. This recommendation will then go to the City Commission in the coming weeks. They will then decide if the changes are to be made. This is certainly a large step toward victory. It shows that some city officials are listening and responding to the pressure of activists.

In addition, many activists involved in this battle feel any ordinance or meal limit is outright inhumane and unnecessary. They are continuing the fight to remove any and all limits. They continue to put pressure on other influential city residents who have supported the meal limit.

The fight will continue. This move forward is big news. Yet, as many activists know quite well, the fighting does not stop until all changes are made. The Gainesville City Commission has shown little empathy for the most vulnerable city residents. There is the possibility that they will not agree to this change.

Please continue to support this important fight by signing the petition. And if you have already signed, please continue to share with your network! Thank you to all who have provided support in this fight!

To read the article on Change.org, click here.

The AIDS Drug Assistance Program Crisis in Florida Worsens

Post originally published on Change.org

Florida has been at the center of the ADAP Crisis since the beginning. Now it seems that the crisis could get even worse.

The AIDS Drug Assistance Program (ADAP), is a vital program that assists HIV-positive individuals with paying for the incredibly expensive medications needed to treat and manage this devastating disease. Without these essential medications, a person’s HIV disease is more likely to progress to AIDS. HIV/AIDS can become life-threatening.

For a variety of reasons, ADAP funding is being slashed in many states across the country. Thousands of HIV-positive people have been terminated from the program and thousands more are being placed on waiting lists. This means that a person living with HIV/AIDS may need to wait to receive the medications they need to save their life.

As of April 14, there are 7,885 people in 11 states on ADAP waiting lists. Florida currently has 3,807people on their waiting list.  Florida has always had the most number of people on these waiting lists. This is a complete travesty.

Recently, Florida officials announced that they are looking to enforce stricter guidelines for their ADAP eligibility requirements. The Florida Department of Health’s Bureau of HIV/AIDS is proposing to require that a person’s income be 200% the national poverty level to be eligible; not 400% as is the current requirement. This move would completely terminate hundreds of HIV-positive people from ADAP due to their “too high” income level. No waiting list, just total loss. This could be beyond disastrous for all HIV-positive individuals living in Florida.

Florida officials have tried this tactic already, and were unsuccessful. A few months ago, officials decided to cancel a public hearing to discuss the same changes they are proposing now. Clearly this is not a universally popular move on the part of these officials.

Advocates are uniting to continue to fight this proposal. They have been successful in the past, they hope to be successful again. Cutting ADAP funding and making any changes that put more HIV-positive individuals at risk is completely inhumane. Those living with HIV/AIDS need assistance and compassion. They are able to live a full life — only with the very medications these officials are attempting to restrict further access to. Advocates will continue the fight to ensure the ADAP Crisis in Florida does not get any worse than it already is.

You can join the fight as well. Please take some time to sign the petition demanding Florida officials to fully fund ADAP for all HIV+ Florida residents. Already, close to 1,000 of you have signed the petition! Thank you for your support. Please continue to share this important action with your network. Together, we can end any further negative changes to ADAP assistance in Florida. Together, we can end this crisis!

To read the post on Change.org, click here.

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