Profiles in ADAP Leadership

The ADAP Advocacy Association hosted its 3rd Annual ADAP Leadership Awards Dinner on Monday, July 8th in Washington, DC. The event marked an opportunity for stakeholders invested in the AIDS Drug Assistance Program (ADAP) -- most notably people living with HIV-infection -- to celebrate the accomplishments achieved and leadership demonstrated by individual, community, government, media and corporate leaders who are working to improve access to care and treatment. It was headlined by the Honorable Tommy G. Thompson, former Governor of Wisconsin and former Secretary of the U.S. Department of Health & Human Services.

Thompson's keynote provided a reflective glimpse into all that the HIV/AIDS community has achieved over the last several decades, both domestically and abroad. It also showed that HIV/AIDS transcends partisan politics.

His understanding of the unique challenges facing people living with HIV-infection dated back to his tenure as Wisconsin's 42nd Governor, and it continued into his service at the federal level. While serving as the Secretary at HHS, ADAP federal appropriations increased from $571 million in 2001 to $787 million in 2005. He also oversaw the $20 million in emergency ADAP funding that was released during the first ADAP waiting list crisis nearly a decade ago. Working alongside Secretary of State Colin Powell, Thompson was instrumental in developing President George W. Bush's PEPFAR initiative and chaired the Global Fund to Fight AIDS, Tuberculosis, and Malaria, a worldwide effort that focused on the problem around the world, with annual trips to Africa. 

Thompson was presented with the ADAP Advocacy Association's first-ever "ADAP Lifetime Achievement Award" as a 'thank you' for his decades of public service commitment to people living with HIV-infection.

Following the keynote, Brandon M. Macsata, CEO of the ADAP Advocacy Association, presented the ADAP Leadership Awards.  The 2012-2013 award recipients included:

• ADAP Champion of the Year (individual): 
• President Barack Obama
• ADAP Emerging Leader of the Year (individual): 
• Julio Fonseca, HealthHIV (Wash-DC)
• ADAP Corporate Partner of the Year: 
• HarborPath
• ADAP Community Organization of the Year: 
• AIDS Foundation of Chicago
• ADAP Lawmaker of the Year: 
• The Honorable Tom Coburn, M.D., U.S. Senate (OK), The Honorable Donna Christensen, M.D., M.C. (Virgin Islands)
• ADAP Social Media Campaign of the Year: 
• My HIV Journey by Aaron Laxton
• ADAP Grassroots Campaign of the Year: 
• Syringe Decriminalization Campaign by the North Carolina Harm Reduction Coalition
• ADAP Media Story of the Year: 
• Why Some with HIV Still Can’t Access Treatment by Sarah Childress, PBS Frontline

Upon announcing the 2012-2013 awardees earlier this year, Macsata stated, “The ADAP Advocacy Association is pleased to present this year’s recipients of its annual leadership awards, as we recognize a truly distinguishable group of awardees who have demonstrated a keen interest in preserving access to care under the AIDS Drug Assistance Program...thousands of underserved people living with HIV/AIDS have gained access to care and treatment, thanks to this year’s awardees."

The significance of the combined commitment to excellence displayed by the 2012-2013 awardees cannot be understated. According to the National Alliance of State & Territorial AIDS Directors (NASTAD), there were 4,717 people in 12 states on ADAP waiting lists, as of January 12, 2012. As a result of FY2011 ADAP emergency funding, Alabama, Florida, Georgia, Idaho, Louisiana, Montana, North Carolina, Ohio, South Carolina, Utah, and Virginia were able to reduce the overall number of people on their waiting lists.  As of April 19, 2012, that number had decreased 3,079 people on ADAP waiting lists in 10 states.  By mid-year, there are 2,170 people on ADAP waiting lists in 9 states. The total number of people on waiting lists had decreased 77 percent since a high of 9,298 individuals on September 1, 2011.  The most dramatic decrease occurred in the latter part of the year when NASTAD reported only 58 people on ADAP waiting lists in four (4) states, as of December 13, 2012.

The bar this year was set very high starting with President Obama's budget including additional federal appropriations for the cash-strapped ADAPs, as well as his numerous unilateral attempts to funnel more funding into the program via intra-department transfers. The latter action, first announced on Worlds AIDS Day in late 2011, led to the dramatic decrease in the number of people living with HIV-infection languishing on ADAP waiting lists.

Additionally, Julio Fonseca's efforts at HealthHIV with its Workforce Capacity Building have led to greater awareness within the medical community and elsewhere by matching physicians, nurse practitioners, and physician assistants to HIV clinical experts who provide one-on-one coaching, education, and training. Sarah Childress' reporting at PBS Frontline showed that some in the news media not only haven't turned a blind eye to HIV/AIDS in America, but truly understand the negative consequences of restricting access to care. Her story, "Why Some with HIV Still Can’t Access Treatment," represented one of the most comprehensive analysis of the problem facing thousands of people living with HIV-infection in the United States, especially those on ADAP waiting lists.

Senator Tom Coburn (R-OK) and Rep. Donna Christensen (D-Virgin Islands) reassured ADAP stakeholders that bi-partisan, bi-cameral support for Ryan White CARE Act programs still exists in the U.S. Congress. Rep. Christensen was in attendance to accept the Lawmaker of the Year Award, sharing her past experiences as a physician in the Virgin Islands trying to treat patients with virtually no medical treatment options available on the island.

The awards also reminded ADAP stakeholders that traditional grassroots advocacy is alive and well today, and so is the emerging advocacy platform of social media. The North Carolina Harm Reduction Coalition was represented by its Executive Director, Robert Childs, who accepted the Grassroots Campaign of the Year Award for their Syringe Exchange Decriminalization Campaign. Whereas Aaron Laxton could not attend the event in person, he posted a video on his YouTube page accepting the Social Media Campaign of the Year Award for his My HIV Journey vlog.

Finally, nonprofit community organizations and corporations also proved that their contributions remain invaluable. The AIDS Foundation of Chicago's efforts in Illinois prevented a potentially devastating cut to that state's ADAP, thus keeping hundreds of patients actively in care and treatment. HarborPath's new patient assistance portal links patients, who would otherwise not be receiving care and treatment, with life-saving medications donated by pharmaceutical companies. Their combined efforts earned them the Community Organization and Corporate Partner awards, respectively.

For three years running, even if just for a few hours, ADAP stakeholders came together in celebration...and appreciation. The evening ended with countless hugs, congratulatory salutes and a renewed sense of purpose. Much work remains to be done!

[Event Photos]

Brandon M. Macsata presents Tommy G. Thompson with the ADAP Lifetime Achievement Award

Brandon M. Macsata (left), Rep. Donna Christensen (center), Bill Arnold (right)

Brandon M. Macsata (left) presents Dr. Grant Colfax with the ADAP Champion of the Year Award, which was awarded to President Barack Obama

 

Personal Perspective: Impact of HIV Criminalization

By Robert Suttle

The talk about curing AIDS is rhetoric, unless one also includes curing injustice in our criminal justice system and curing stigmatization of people with HIV and others society sets apart, making them "the other,” like positive women, sex workers, men who have sex with men, drug users, transgendered persons, migrants, and our LGBTQ youth. We can’t cure HIV/AIDS until we address the whole host of public health issues that exacerbate the epidemic.

I am not a criminal. I am not a sex offender, but the state of Louisiana says that I am.  A former partner, with whom I had a contentious relationship, filed charges against me for not having initially disclosed my HIV-positive status when we first met. This was not about transmitting HIV - I wasn't accused of that - just about whether or not I shared my HIV status. I spent my savings to hire a lawyer and ultimately accepted a plea bargain, rather than risk a 10-year sentence. I served six months in prison for a conviction under Louisiana's so called "Intentional Exposure to the AIDS Virus" statute. Now I am obligated to register as a sex offender for 15 years. On my Louisiana driver's license, underneath my photograph, it says in large red capital letters "SEX OFFENDER". 

When I was released from prison, in January 2011, I knew that I needed a new life plan. I was now not only a gay black man with HIV, but also a convicted felon and registered sex offender. My career had been in the state appellate court system, but they could not hire a convicted felon. My employment options were limited. I also knew that I had suffered a terrible injustice, although I did not know it had a name: "HIV Criminalization"

So, as I contemplated rebuilding my life, I remembered this saying: "your misery is your ministry" meaning that which pains you, that which causes you discomfort, that which has been burdened upon you is exactly that which can be your salvation, that which can be your calling, that which can be the way you become of service to your fellow man…. and woman.  This lesson has given me the courage to become an advocate to combat stigma, discrimination and criminalization. 

What is HIV Criminalization?

• HIV criminalization is the inappropriate use of one’s HIV status in a criminal proceeding
• “HIV-specific” statutes that punish the failure to disclose one’s HIV+ status prior to sex
• “HIV-specific” statutes that enhances sentencing for HIV+ people charged with certain crimes
• About 2/3 of U.S. States and Territories have such “HIV-specific” statutes

Today

• More than 1,000 instances when HIV-specific charges have been filed
• HIV transmission rarely a factor (<10%)
• 25% of recent cases are for spitting, scratching and biting
• Condom or low viral load not a defense
• Every person with HIV one disgruntled ex-partner away from a courtroom

What We Now Know

• Discourages testing and cooperation with public health, does not reduce risky behavior (O’Bryne)
• Undercuts personal responsibility message, tells HIV negative people that HIV prevention isn’t their job
• Creates an illusion of safety for those negative or untested and encourages blame
• Reinforces stigma and misconceptions about real routes, risks and consequences of HIV transmission

Public health and the criminal justice system aren't coordinated. If our goal is to improve public health, then we need the law to reflect good public health practice and not contribute to the stigmatization of people with HIV as viral vectors, potential infectors and inherently dangerous.

www.seroproject.com

Today, I am assistant director of the Sero Project, a national organization founded by people with HIV combating stigma, discrimination and criminalization while supporting efforts to empower people with HIV to become meaningfully engaged in policy making and service delivery and leaders in the fight against HIV/AIDS.  We work with a large national network of activists and advocates, particularly others with HIV, as well as public health, criminal justice, medical and scientific professionals, political and public policy leaders, the media and other not-for-profit and grassroots organizations. Our work to date has included documentation of the HIV criminalization phenomenon, outreach to engage and empower those who have been prosecuted or are at greatest risk of prosecution and community education and advocacy mobilization.

In the past year we have spoken at or participated in more than 60 public events, ranging from professional conferences to community forums, worked with scores of journalists, created a support and advocacy network of people who have been prosecuted for HIV crimes, undertaken original research and supported local and statewide advocacy efforts. We see HIV criminalization as a public health concern, as well as an injustice to people with HIV, and to counteract or prevent the characterization of the issue as one defined by a liberal/conservative or partisan divide. 

We have made significant progress in educating communities on how HIV criminalization, as a most extreme manifestation of stigma, is creating, not preventing, new HIV infections.  We also have helped create tools and provide inspiration and guidance for the mobilization necessary to modernize statutes, combat stigma and discrimination and create an environment where it is safer for people with HIV to disclose their status.

This message, however, isn't about what happened to me. It is about how easily it could happen to any of you. It is about what is happening right now to increasing number of men and women with HIV all over this country and all over the world. The only people who will stop this epidemic of injustice are those of us who understand how insidious and destructive HIV stigma can be. If we do not make this issue a priority, if we do not lead, and if we do not demand change, it will never happen.

Support the REPEAL HIV Discrimination Act (H.R. 1843)

For more information, email us at info@seroproject.com or visit seroproject.com, LIKE us on Facebook and Follow us on Twitter @TheSeroProject

ADAPs Under the Gun with Federal Funding Cuts

The AIDS Drug Assistance Programs (ADAPs) have had a rocky start in 2013. Initially, sequestration -- which are the budgets cuts to particular categories of federal spending that began on March 1, 2013 as an austerity fiscal policy that were enacted by the Budget Control Act of 2011 [1] -- is reportedly going to result in up to 15,700 people living with HIV/AIDS losing their access to treatment. As if the sequestration wasn't bad enough, ADAPs took another blow later that month when President Obama signed into law the Consolidated and Further Continuing Appropriates Act of 2013 on March 26, 2013. [2]  The CR failed to include the $50 million that was announced on World AIDS Day last year by the president ($35 million for ADAPs; $15 million for Part C clinical care).

It remains unclear how sequestration will impact ADAPs, but reports indicate that the funding could be cut by as much as 5.2%. The combined impact of the federal funding cuts under sequestration and the CR will likely result in ADAP waiting lists.

As of April 11th, three states still had waiting lists left over from the "Perfect Storm" that ravaged ADAPs for several years, resulting in nearly 10,000 people living with HIV/AIDS being denied access to treatment. According to the National Alliance of State & Territorial AIDS Directors (NASTAD), Idaho has 14 people on its waiting list, South Dakota has 17 people on its waiting list and Florida currently has a waiting list, although no one is on it. [3]

NASTAD also reports the following cost containment measures: [4]

• Florida: Formulary reduction 
• Idaho: Enrollment cap 
• Illinois: Formulary reduction, expenditure cap (monthly) 
• Indiana: Enrollment cap 
• Kentucky: Expenditure cap (annual) 
• Montana: Elimination of all support services 
• New Mexico: Expenditure cap (monthly) 
• Puerto Rico: Formulary reduction 
• South Dakota: Expenditure cap (annual) 
• Tennessee: Formulary reduction 
• Utah: Formulary reduction, enrollment cap 
• Virgin Island (U.S.): Formulary reduction 
• Washington: Pay insurance premiums only if client is prescribed and taking ARVs
• Wyoming: Enrollment cap

Whereas there is an advocacy effort underway to convince The White House to re-program the funding that was lost under the CR back into ADAPs, there is no certainty that it will occur. And it most certainly will not occur unless the HIV/AIDS community is vocal about it.

To that end, 169 organizations endorsed a national sign-on letter that was spearheaded by the ADAP Coalition and sent to President Obama on April 8th. The letter, in part, reads: "We greatly appreciate your leadership on the domestic HIV epidemic. Your prioritization of addressing the ADAP crisis by providing $70 million in emergency funding over the course of 2010 – 2012 and an additional $15 million for Part C programs during FY2012 demonstrates your deep commitment to individuals living with HIV/AIDS. On behalf of these individuals, we hope that you continue your steadfast leadership by authorizing again this transfer of $45 million as soon as possible in FY2013."

Numerous organizations are also coordinating various advocacy efforts. The ADAP Advocacy Association will be dedicating a significant portion of its 2013 Annual Conference to this issue when it convenes in Washington, DC this summer.

In the meantime, ADAP stakeholders should be aware that The ADAP Coalition has published its ADAP Need Number for fiscal years 2013 and 2014:

"FY2013 and FY2014 – Based on the model, in order to maintain the program and allow for new enrollment, there is a need for an additional $54 million in revenues for ADAPs in FY2013, and $134 million in revenues in FY2014. These amounts have been divided into a federal and state share based upon historical data and the current fiscal situation in states. Historically, the federal share was 80 percent and the state share was 20 percent. Due to the current fiscal crisis among states the split has been adjusted to an 85 percent federal share and a 15 percent state share. The state share of the increase is based upon the current portion (13 percent) of total ADAP revenues that derive from state appropriations and a recognition of the severe fiscal constraints facing states at this time. The 85/15 percent split is applied to the overall ADAP revenue. The final projected additional remaining federal need for FY2013 is $46 million and the increased need for FY2014 is $114 million for a total of $160 million."[5]

---------

[1] Wikipedia, "Budget sequestration in 2013," 2013.
[2] Public Law, 113-6.
[3] National Alliance of State & Territorial AIDS Directors, "The ADAP Watch," April 11, 2013.
[4] National Alliance of State & Territorial AIDS Directors, "The ADAP Watch," April 11, 2013.
[5] The ADAP Coalition, "ADAP Budget Projection - Fiscal Years 2013 and 2014," January 2013.

HealthHIV State of HIV Primary Care Survey

HealthHIV is assessing the impact of the rapidly changing healthcare environment on HIV primary care providers.  They once again partnered with Medscape to conduct the 3rd annual "HealthHIV State of HIV Primary Care Survey" of healthcare providers.  This survey explores the latest issues in HIV service delivery including linkage and retention, reimbursement and readiness for health reform.  These data will help to identify how service delivery approaches can be conceptualized and implemented in this rapidly changing landscape, while addressing the rising demand for quality HIV primary care nationwide. 

If you are a prescribing provider, your perspective on the current HIV landscape is extremely valuable and your input would be greatly appreciated.  To take the 10-15 minute survey, please click the link below. Please share the link with providers that you know as well.

Click the following link to complete the survey:

https://www.surveymonkey.com/s/LTWGBY7

A Two-Front Battle Facing ADAP: HIV/HCV Co-Infection

Despite very little news coverage, there is a storm brewing that will have a serious impact on the nation's already-strained public health system.

People living with HIV infection are disproportionately affected by viral hepatitis; about one-third of HIV-infected people are co-infected with Hepatitis C, which can cause long-term (chronic) illness and death. Hepatitis C progresses faster among people living with HIV infection and people who are infected with both viruses experience greater liver-related health problems than those who do not have HIV infection. Although antiretroviral therapy has extended the life expectancy of people living with HIV infection, liver disease—much of which is related to Hepatitis C has become the leading cause of non-AIDS-related deaths among this population.

ADAP Coverage of Hepatitis C Treatment, June 2011

Here are some sobering important facts about HIV/HCV co-infection:

• About 25% of people infected with HIV in the U.S. are also infected with HCV.
• About 80% of injection drug users (IDUs) with HIV infection also have HCV.
• HIV/HCV co-infection more than triples the risk for liver disease, liver failure, and liver-related death from HCV.
• Compared with other age groups, a greater proportion (about 1 in 33) of people aged 46–64 years are infected with HCV.
• Chronic HCV is often "silent," and many people can have the infection for 20 to 30 years without having symptoms or feeling sick.
• In the U.S., HCV is twice as prevalent among blacks as among whites.
• New data suggest that sexual transmission of HCV between MSM living with HIV occurs more commonly than previously believed and that sexual transmission can occur undetected between HIV-infected MSM in the absence of injection drug use. [1]

Undoubtably, public health systems are facing a grim reality as more people are co-infected with HIV/HCV.  Currently, there are twenty-eight (28) states that have Hepatitis C treatment as part of their drug formulary under the AIDS Drug Assistance Program (ADAP).[2]  It is therefore important to examine relevant cross-section between HIV/HCV with respect to ADAPs.

HIV/HCV co-infection remains a growing and evolving epidemic. Advances in HIV medication since the introduction of HAART in 1996 has increased a detection of sexually transmitted HCV infection. Sexual transmission of HCV is becoming a growing concern amongst MSM as discussed in an MMWR report released July 22, 2011.[3]

ADAPs provide HIV-related prescription drugs to low-income people with HIV/AIDS who have limited or no prescription drug coverage. With nearly 200,000 enrollees, ADAPs reach approximately one-third of people with HIV estimated to be receiving care nationally. In June 2008 alone, ADAPs provided medications to about 110,000 clients and insurance coverage to thousands more. 

HCV is a common co-infection in people living with HIV/AIDS. An estimated 200,000-300,000 people in the United States are co-infected with both HIV and HCV infections. Experts believe that about 25% - 30% of Americans living with HIV are also co-infected with HCV; conversely some 10% of people with HCV are thought to also have HIV infection.  Currently specific ADAP funding does not exist to support treatment for Hepatitis C. However, some states with robust ADAP budgets use Part B money to pay for HCV treatment for co-infected clients.

The Community Access National Network (CANN) has recognized this emerging public health concern, and recently announced the formation of its new hepatitis initiative.  The “HEPATITIS: Education, Advocacy & Leadership” Project also known as HEAL, will participate in various hepatitis stakeholder groups to map out strategies on prevention, education, treatment and access to care, with a particular focus on HIV and Hepatitis C (HCV) co-infection.

“CANN has long been recognized for its commitment to promoting patient access to timely care and treatment, and the HEAL project will educate consumers, community partners, as well as congressional staff here in Washington, D.C. about the fastest growing public health epidemic since AIDS: HCV infection,” summarized Bill Arnold, President & CEO of the Community Access National Network.  “We have learned many valuable lessons from the HIV/AIDS advocacy community over the last three decades, and CANN will now apply those lessons to ensuring access to effective HCV treatments.” 

To that end, HEAL will be collaborating with the ADAP Advocacy Association in April to host an HIV/HCV Co-Infection ADAP Summit in Las Vegas, NV.  The purpose of the HIV/HCV Co-Infection ADAP Summit is to provide the latest information to appropriate ADAP stakeholders on Hepatitis C drug development, patient assistance programs, and other updates about HIV/HCV co-infection; identify funding shortfalls within ADAP, and bring to the forefront dialogue and a strategy to attain more funding for ADAP to treat co-infected clients; identify potential HCV rebate dollars available using ADAP rebate methodology; and facilitate ongoing dialogue between ADAP stakeholders, pharmaceutical industry and other applicable entities in order to collectively identify practical strategies to improve access to care for people co-infected with HIV/HCV. 

Interested parties should inquire at info@adapadvocacyassociation.org.

---

[1] Centers for Disease Control & Prevention, HIV and Viral Hepatitis Fact Sheet, November 2011.

[2] National Alliance for State and Territorial AIDS Directors (NASTAD), National ADAP Monitoring Project Annual Report, 2011.

[3] U.S. Centers for Disease Control & Prevention, MMWR Vol. 60 No.28, July 22, 2011.