AIDS Drug Assistance Program

Friday, August 26, 2011

ADAP Waiting Lists, Public Opinion Perspectives & Competing Ribbons

In 1996, HIV/AIDS was ranked by the American people as the number one public health concern facing the nation. While anti-retroviral treatments were entering the world stage with a bang at the time, it was hard to overcome more than a decade characterized by AIDS ignorance, stigma and fear. Fast forward to 2010, Americans ranked Swine Flu as the most important public health concern...yet not a single person died of the illness last year in the United States. Despite thousands of AIDS-related deaths in 2010, HIV/AIDS ranked in the mid-20s among the public health concerns of the American people.

Could the changing attitudes help explain why as of August 18th (2011), there were 9,201 people living with HIV/AIDS on waiting lists under the AIDS Drug Assistance Programs (ADAPs) in twelve states? Could the lack of public concern be fueling insufficient federal funding, statewide cost containment strategies or rising drug prices and even the historic number of people being denied access to care and treatment?

The Kaiser Family Foundation (KFF) just might have the answer!

In June 2011, KFF released its "HIV/AIDS At 30: A Public Opinion Perspective" summarizing its eighth large-scale national survey of Americans on HIV/AIDS. The results should not come as any surprise.

Key findings include:1

Black Americans, and particularly young blacks, express much higher levels of concern about HIV infection than whites.
Reported HIV testing rates are flat since 1997, including among some key groups at higher risk.
Thirty years into the epidemic, there is a declining sense of national urgency and visibility of HIV/AIDS.
At the same time, after nearly a decade of decline, the share of Americans who say they are personally "very concerned" about becoming infected ticked up for the first time in this year's survey.
Many Americans still hold attitudes that may stigmatize people with HIV/AIDS, but such reported attitudes have declined in recent years.
Despite continuing economic problems, more than half of Americans support increased funding for HIV/AIDS, and fewer than one in ten say the federal government spends too much in this area.
Media, which includes radio, television, newspapers and online sources, is the top information source on HIV across racial/ethnic groups and for younger and older adults alike.
Three-quarters of Americans could not name an individual who stands out as a national leader in the fight against HIV/AIDS, and no person who was mentioned makes it into double digits.

For additional information about the excellent resources being made available by KFF, please visit their website: http://www.kff.org/kaiserpolls/8186.cfm.

Obviously, Americans no longer view HIV/AIDS as a priority in the United States. Is there any other reason to explain why the number of people living with HIV/AIDS on ADAP waiting lists in this country has exploded from 99 in May 2009 to 9,201 to August 2011? That's a 9,193% increase!!!

Since the late 1990s, HIV/AIDS funding has been hit with a double-whammy...

The federal commitment to domestic HIV/AIDS funding for Ryan White programs, including ADAP, has struggled to keep pace with demand and the proven science and cost-effectiveness of prevention, care and treatment over the past decade. Yet, since 2003 domestic HIV/AIDS programs have taken a back seat to the President's Emergency Plan for AIDS Relief (PEPFAR), a five-year $15 billion plan to fund AIDS care and prevention in the developing world. According to the Center for Global Development, the United States has disbursed $18.8 billion via PEPFAR since its inception,2 and an additional $5.5 billion is appropriated for FY2009, representing 1/6 of the total State and Foreign operations appropriations.3 In comparison, Ryan White funding (including ADAPs) was appropriated at $2.02 billion in FY2004, $2.04 billion in FY2005, $2.04 billion in FY2006, $2.11 billion in 2007, and $2.14 billion in FY2008.4 The most recent Omnibus spending package approved by Congress included $2.24 billion for FY2009, which means that the United States has spent one-third (1/3) less on services and supports funded under Ryan White than was sent to combat AIDS abroad! Unfortunately, funding in FY2010 continued that trend. That's whammy #1!

The Red Ribbon was once a widely-recognized symbol of awareness and hope for people effected, and affected by HIV/AIDS. Wearing the Red Ribbon was likened to a first place ribbon in the fight against the disease...but now, that ribbon has fallen behind to competing colors. Whether it is the Pink Ribbon for breast cancer, Blue Ribbon for prostate cancer or the Jigsaw Ribbon for autism, numerous other colors have relegated the AIDS Ribbon to the back of the pack. For example, cancer research received $1.3 billion in American Recovery and Reinvestment Act funds for spending by the National Cancer Institute in FY 2009 and FY 2010.5 Ironically, despite repeated pleas by some Members of Congress and the broader HIV/AIDS community, no such stimulus funding was devoted to alleviate the ongoing ADAP crisis. That's whammy #2!

The paradigm that led to this one-two punch needs to change. Otherwise, ADAP waiting lists will continue to grow...leaving a growing number of people living with HIV/AIDS in the United States without the timely and appropriate access to care and treatment. It starts with public perception...

1st Place

2nd Place

3rd Place

Last Place

Isn't it time for HIV/AIDS to compete again?

________

1 Kaiser Family Foundation, "HIV/AIDS At 30: A Public Opinion Perspective," June 2011.

2 http://www.cgdev.org/section/initiatives/_active/hivmonitor/pepfardata
3 http://appropriations.house.gov/pdf/SFOFY0902-23-09.pdf
4 National Association of State & Territorial AIDS Directors, “FY2004 – FY2008 Appropriations for the Ryan White Program”, February 2008
5 National Cancer Institute, "Cancer Research Funding - Key Points," June 2011

Friday, August 19, 2011

Why the Congressional HIV/AIDS Caucus Needs to Rise Above Partisanship

The U.S. House of Representatives recently filed paperwork to form the bipartisan Congressional HIV/AIDS Caucus ((formerly the Congressional Task Force on International HIV/AIDS) ). The Caucus is being spearheaded by Rep. Barbara Lee (D-CA), Rep. Jim McDermott (D-WA) and Rep. Trent Franks (R-AZ) "to examine methods by which the United States can maintain global leadership in the response to the epidemic." During the August recess, Members of Congress need to hear from their constituents (YOU) about why it is important that they join the Caucus...especially Republican lawmakers.

Not simply because the Republicans control the majority in the U.S. House of Representatives, but more importantly because HIV/AIDS is NOT a partisan issue. Since the Human Immunodeficiency Virus (HIV) doesn't ask people it is about to infect about their political party affiliation, it is incumbent upon our elected officials to combat HIV using the very same standard. Partisanship needs to be left out of the equation altogether.

At this very moment, Representatives Lee, McDermott and Franks are soliciting their House colleagues to join the Caucus, but they need to hear from people living with HIV/AIDS! Without a strong and consistent outcry from the community, many lawmakers might be left with the false impression that HIV/AIDS isn't a priority for the 112th Congress. Unfortunately, thus far only Democrats have joined the Caucus (although numerous GOP offices have been targeted and most likely will be joining).

Unless more House Republicans join the Caucus and together with their Democratic colleagues identify and support viable solutions, it [the Caucus] will be doomed to failure. It is especially critical that long-time GOP lawmakers with established records on HIV/AIDS join the Caucus. They include, just to name a few, Rep. Ileana Ros-Lehtinen (FL), Rep. Mary Bono Mack (CA), Rep. Frank Wolf (VA) or Rep. Kay Granger (TX).

With so many issues facing the country, unfortunately HIV/AIDS has been relegated to the back burner in many respects. The Caucus represents an excellent opportunity to change this paradigm. In the 112th Congress, the Congressional HIV/AIDS Caucus will explore five thematic areas:

• Implementation of the US National HIV/AIDS Strategy;

• Financing for Bilateral and Multilateral HIV/AIDS programs;

• The state of HIV/AIDS research;

• The role of Faith-Based Organizations; and

• The 2012 International AIDS Conference to be held in Washington, D.C.

While efforts to initiate the bipartisan Congressional HIV/AIDS Caucus should undoubtably be commended, it shouldn't be overlooked that this is being done at the very same time a record number of people living with HIV/AIDS are languishing on waiting lists under the AIDS Drug Assistance Programs (ADAPs). So...any Congressional effort to address HIV/AIDS-related issues should first focus on the domestic crisis facing 9,217 ADAP-eligible patients who are being forced to go without their life-saving medications, as well as the hundreds more who have been kicked off their State's ADAP by eligibility restrictions.

Is it rational to discuss research when thousands of people living with HIV/AIDS are being denied access to care and treatment? Does it make any sense for lawmakers elected to the U.S. House of Representatives by people living in the United States to address issues with an international focus without first taking immediate steps to alleviate the ongoing ADAP crisis? Doing so would only lessen credibility surrounding the Caucus' activities. There are people right here, right now who desperately need their elected officials to provide leadership, regardless of political party.

That is why the bipartisan Congressional HIV/AIDS Caucus needs to be just that...bipartisan!

Editor's Note: When contacting your Member of Congress about the bipartisan Congressional HIV/AIDS Caucus, tell them that to join the Caucus or for more information, please contact Jirair Ratevosian (Lee), Andrew Adair (McDermott) or Stephanie Hammond (Franks).

Friday, August 12, 2011

Housing Works: Super Committee Republicans Could Jeopardize AIDS Programs

The following blog is being shared compliments of Housing Works. CLICK HERE to view the original post.

From top left: Republicans Kyl, Portman, Toomey, Upton, Hensarling and Camp

Congress has just finalized the roster for the super committee—the group of lawmakers charged with charting much of the country’s fiscal future—meaning it’s time to examine how the committee’s decisions could shape AIDS programs in the U.S.

So far, we know this: The committee includes two of the most fiscally conservative Republicans in Congress, Sen. Pat Toomey and Rep. Jeb Hensarling. It also includes Sen. Jon Kyl, one of just three senators to vote against the Ryan White CAREReauthorization Act in 1995, legislation that extended funds for people with HIV/AIDS and their families.

“[The committee’s] decisions could have a profound impact on our programming for years to come,” said Ronald Johnson, vice president for policy and advocacy at AIDS United. “If deficit reduction is completely made up of spending cuts, that increases the possibility that there will be less money available for HIV-related programs, health care, and the safety net as a whole.”

The 12-person committee is charged with trimming the country’s deficit by $1.5 million during the next decade. The group will have few limits as to what it can do to reduce the deficit, meaning changes and cuts to programs critical to people living with HIV/AIDS will be on the table.

It’s unlikely that the committee will demand a reduction to a specific program like the AIDS Drug Assistance Program. Instead, larger decisions—like a cap on non-discretionary funding—would shrink the pool of money available to all programs, including money for ADAP, the Housing Opportunities for Persons with AIDS program, and the Ryan White program.

The committee can also make alterations to structure and funding for Medicaid and Medicare, and any changes will affect the growing number of people living with HIV/AIDS who depend them.

“The Democrats that have been named are defenders of our programs,” said Carl Schmid, deputy executive director at theAIDS Institute in Washington, D.C. “[Sen. Max] Baucus, [Sen. John] Kerry, and [Sen. Patty] Murray have all stood up for low-income people. But the Republicans that have been selected are all fiscal conservatives.”

Several Republican committee members, including Toomey and Henserlang, have already said they will focus on reducing the deficit by making deep cuts—instead of exploring new revenue options.

“I want to see people who are going to defend the safety net, who realize that balancing the budget on the backs of poor people is not going to be a successful strategy,” said Christine Campbell, Housing Works’ vice president of national advocacy and organizing. “And when these 12 look at Medicaid and Medicare, it’s got to be from the perspective of reform and not just cuts.”

The super committee:

Republicans
Rep. Dave Camp of Michigan
Rep. Fred Upton of Michigan
Rep. Jeb Hensarling of Texas
Sen. Jon Kyl of Arizona
Sen. Pat Toomey of Pennsylvania
Sen. Rob Portman of Ohio

Democrats
Rep. Chris Van Hollen of Maryland
Rep. Xavier Becerra of California
Rep. James Clyburn of South Carolina
Sen. Patty Murray of Washington
Sen. Max Baucus of Montana
Sen. John Kerry of Massachusetts
Follow the Update blog on Twitter @housingworks.
Posted by Julie Turkewitz , August 11, 2011 at 12:20pm

Friday, July 29, 2011

Is Hepatitis C treatment covered by your states ADAP program; and some facts on Acute Hep C

The AIDS Drug Assistance Program (ADAP) provides HIV/AIDS related prescription drugs to uninsured and underinsured individuals living with HIV/AIDS and in a handful of states provides Hepatitis C treatment which consists of interferon-based treatment and Ribavirin.

ADAP funds are used to provide medications to treat HIV disease, or to prevent the serious deterioration of health, including measures for the prevention and treatment of opportunistic infections. As a payer of last resort, ADAP only serves individuals who have neither public nor private insurance or cannot get all of their medication needs met through their insurance payer. In order to qualify you must prove an HIV/AIDS diagnosis and be below your states income cap to receive this insurance.

AIDS Drug Assistance Programs (ADAPs) are authorized under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (reauthorized in 2009). ADAPs are not entitlement programs but are dependent on federal and state discretionary funding, which determines how many clients ADAPs can serve and what levels of service states can provide.

When learning of my co-infection of HIV/HCV I did a lot of research online. How was I going to pay for this treatment, and if I could not afford the medicine, how was I going to get the medicine I needed to stay alive and to stave off a chronic Hepatitis C infection.

During my Hepatitis C treatment I was fortunate to have private insurance which paid for my treatment, but what if I did not have private insurance, or private insurance that did not cover Hepatitis C treatment. Hepatitis C is emerging as a pandemic in cities across the country for those infected with HIV/AIDS, and though most commonly found in people who share needles.. An estimated one-third of people with HIV are also infected with hepatitis C virus (HCV), which is now regarded as a sexually transmitted infection among HIV positive gay and bisexual men. (CROI 2011)

Coinfected individuals tend to experience more rapid liver disease progression than those with HCV alone, and they do not respond as well to interferon-based treatment for chronic hepatitis C. But starting hepatitis C therapy early, during acute infection, can lead to better outcomes. Acute HCV infection is often asymptomatic, but HIV positive men have a better chance of detecting HCV early because they undergo regular liver function monitoring that can reveal HCV-related abnormalities.

These liver function tests can be shown on your lab work as AST and ALT. A spike in these numbers, or an abnormal reading should prompt your doctor to look into a possible Hepatitis C diagnosis.

About 65% of confected patients with HCV genotypes 1 or 4, and 81% with genotypes 2 or 3, achieved sustained response to interferon-based therapy started during acute infection, researchers reported at CROI 2011.

If you have HIV AND Hepatitis C and wondering if your states ADAP covers Hep C treatment I have done the research for you.

Below you will find a list of states that do and do not provide Hepatitis C treatment.

All states ADAP funding including the US Virgin Islands and Puerto Rico cover HIV medications. ****

The follow states do cover Hepatitis C treatment

Alabama

Alaska

Arizona

California

Connecticut

Delaware

District of Columbia

Hawaii

Iowa

Maryland

Michigan

Mississippi

New Jersey

New York

Oregon

Pennsylvania

Puerto Rico

Utah

Virginia

Washington

The following states do not cover Hepatitis C medication

Arkansas

Colorado

Florida

Georgia

Idaho

Indiana

Kansas

Kentucky

Louisiana

Minnesota

Missouri

Montana

Nebraska

Nevada

New Hampshire

New Mexico

North Carolina

North Dakota

Oklahoma

Ohio

South Carolina

South Dakota

Tennessee

Texas

Vermont

Virgin Islands (US)

West Virginia

The following states cover only interferon but not Ribavirin

Illinois

Maine

The following states cover Ribavirin and NOT interferon

Rhode Island

****disclaimer**** (updated as of 7/27)

With the current crisis in funding of ADAP programs Nationally; I would advise that you google your states ADAP program and contact information for that program. States are placing people on waitlists to obtain these medications, and are also reducing formularies.

Friday, July 22, 2011

MyGov365...Self-Advocacy in Motion!

Earlier this month a groundbreaking partnership was forged between the ADAP Advocacy Association (aaa+) and MyGov365 designed to better engage people living with HIV/AIDS in the legislative process at the federal, state and local levels. Constituents (a.k.a., voters) often make things happen because lawmakers benefit from their support; so imagine what constituents can do if they were better informed about legislation, as well as connected to their peers who share likeminded goals...in this case, securing appropriate and timing access to care and treatment for people living with HIV/AIDS. MyGov365 provides the necessary tools to make it happen!

aaa+ is the first national HIV/AIDS organization to harness the networking and educational power of the MyGov365 platform. The nonpartisan platform empowers people living with HIV/AIDS with a free suite of tools to enhance communication and collaboration with the general public, peers and elected officials.

MyGov365 is comprised of a diverse mix of everyday citizens with one common passion: to use innovative technology to bridge the communications gaps between citizens, government, organizations and political professionals. MyGov365’s platform intelligently matches users to their districts and elected officials, making it extremely easy for officials to share information and gather feedback. As updates occur such as introduced legislation, bill summaries, or discussions, constituents receive notifications about activity in their district and/or by their specific elected officials. This increases awareness and engagement, and can help lay the groundwork to build community support for various issues, which in turn makes it easier to get legislation considered. Individuals can create their own profile for free at http://www.mygov365.com!

MyGov365’s platform is currently comprised (and growing) of legislation from the United States Congress, District of Columbia (DC) and 32 states – Alaska, Arizona, Arkansas, California, Connecticut, Florida, Hawaii, Indiana, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Nevada, New Hampshire, New Jersey, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, South Dakota, Texas, Utah, Vermont, Virginia, Washington and Wisconsin.

In the Spring 2011, Americans witnessed the "Arab Spring" sweep across the Middle East, ushering in a new era of democracy and freedom for millions of people. Their success was fueled by years of discontent, coupled with a newfound ability to communicate, organize and protest called social media. Never before had people been armed with the tools to instantly communicate with each other on such a large scale to influence political change.

In the United States that same model needs to be employed by HIV/AIDS activists -- and in no other case is the need more pressing than by ADAP constituencies and stakeholders. Weekly, we witness approximately 200 of our fellow HIVers get relegated to a demeaning, stressful and unhealthy place called an ADAP waiting list. In fact, as of July 14th, there were 8,689 individuals in 13 states on ADAP waiting lists, including Alabama with 88 individuals; Arkansas with 37 individuals; Florida with 3,558 individuals; Georgia with 1,669 individuals; Idaho with 23 individuals; Louisiana with 886 individuals; Montana with 29 individuals; North Carolina with 302 individuals; Ohio with 373 individuals; South Carolina with 858 individuals; Utah with 29 individuals; Virginia with 837 individuals; and Wyoming with 0 individuals.

The aaa+/MyGov365 partnership has the ability to re-engage longtime leaders, while also attracting fresh new voices to this fight. What better way to teach the next generation of HIV/AIDS activists than by political networking the very same way social networking is done on Facebook, or professional networking is done on LinkedIn? Often times, too, some constituents complain that understanding the political and legislative process is difficult because the process isn't spelled out in layman's terms, or the information isn't easily and readily accessible. MyGov365 changes that paradigm.

According to Jay Resio, President of MyGov365, using the civic engagement platform, aaa+ will empower its new and existing members to stay informed and engaged about important issues, legislation and civic activities related to the organization's mission. Members can track legislation and receive updates, cast votes on legislative initiatives, collaborate in the ADAP Advocacy Association’s network, and more. ADAP constituencies and stakeholders will benefit from MyGov365's ability to provide member feedback and insight to elected officials, civic leaders and other organizations to help expedite the legislative and civic decision-making process.

Sign up today at www.mygov365.com. It's free and easy to use!

Thursday, July 14, 2011

Where you at ? - The ADAP Crisis in America

Some of you may be familiar with and may of read my previous posts -here- here and here about the ever growing AIDS Drug Assistance Program (ADAP) waiting list in the United States. Well it is that time of year again when the ADAP Advocacy Association ( aaa+) holds it annual ADAP Conference. aaa+ strives to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS. aaa+ works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to assure that access to services recognize and afford persons living with HIV/AIDS to enjoy a healthy life. As always I have to applaud and say THANK YOU to Brandon Macsata for organizing this whole thing and Amanda,Christopher,Joey and Regine and all the volunteers for making the conference a success.

Currently there are 8,615 Americans (as of 6/30/11) who are not getting their life saving medication. They are just simply sitting on a waiting list. Since 6/29/10 over 6,000 Americans have been added to the ADAP waiting list. That is in just one year. This is what made this year's conference extremely important. Can you imagine finding out you are HIV+ today and not being able to get medications because you can't afford them. AIDS medications can cost $1200 a month or more. Would you take the time to apply for ADAP if it meant you were going on a waiting list ? For many Americans this is a reality. So on top of the 8,615 currently on the list can you imagine the hundreds or thousands of people living with HIV/AIDS who don't apply since they can't get care and treatment they need.

It is very frustrating to me. I feel that every human being should be given the treatment they need to live a happy life, regardless of what disease they have or how big their bank accounts are. How can someone not be able to look inside themselves and find the compassion to want to help another human being. It leaves me dumbfounded. We can sit here and point fingers but as a nation we need to stand up to all responsible and create a movement.We literally need to take the streets and fight for our lives.

Lets get back to the conference. The conference opened up with guest speaker Bishop Joyce Turner Keller. The Bishop has lofted the term “southern hospitality” to an entirely new level. She is not only the founder and CEO of Aspirations, a non-profit faith-based community service organization, but someone who is living with HIV/AIDS herself, and has dedicated herself to educating, supporting and inspiring others living with HIV/AIDS throughout the nation.

She was AMAZING. She not only walked in like a rock star with bright red hair, she brought the house down with her opening speech. We all felt her passion and it re-energized the passion inside all of us. She kept asking us one question thought out her speech. "Where you at ?" It clicked in so many ways. At one point during here speech she was calling out names of states. "Florida..Where you at ? Georgia..Where you at ?" Then attendees from each state would make noise and raise their hands. It was very empowering. By the end of the conference she had us all screaming "Where you at ?" It made it me realize how important it is for us living with HIV/AIDS to STAND UP and get our family and friends involved. I hope to have her come on POZIAM Radio sometime soon.

POZIAMers Meet
Tuesday evening I had an awesome experience. I have always wanted to get a group of POZIAMers together for a dinner or event. FYI - POZIAMers are members of my social network. I knew a bunch of them would be in DC for the conference and I would be meeting them for the first time. So I organized a dinner at Level One and about 20 people responded yes. Most of all met out front of the Westin Hotel.

With the help of our tour guide Christopher Myron, our clan arrived at Level One in one piece. There we met up with other POZIAMers who lived in DC but were not attending the ADAP Conference. It was such an amazing feeling to meet the people you see online in person. People who you talk to everyday or read their blogs. We had a great time and obviously took plenty of pictures. I can't wait for the next POZIAMers dinner. Some of us were outside the hotel sharing stories until 3am. We didn't care what time it was. These little conversations with fellow advocates can be life changing. Having Dab Garner as my roommate was one of the other highlights of my trip. Spending time and having conversations with a man you who has been fighting this for over 30 years was priceless. I admire and respect his wisdom and strength. This was the icing on the cake for me.

1st Annual ADAP Leadership Awards Dinner
Wednesday evening we all attended the 2011 Annual ADAP Leadership Award Dinner. As a Board member of aaa+ I have to say we recognized an amazing slate of leaders, who for the last year have taken it upon themselves to raise awareness about the AIDS Drug Assistance Programs. All doing their part in the fight in their own way. It was an honor to be among them all. Over all the conference was a great experience and brought people from across the United States together to discuss a every important issue.