Friday, June 26, 2015

340b: A Peculiar little Designation that is Worth $$$

By: David W. Poole, Director of Legislative Affairs, Southern Bureau, AIDS Healthcare Foundation

“340b” is a simple 3 digit number with one letter of the alphabet attached that represents so much more than what this peculiar little designation might imply. Since 1998, Section 340b of the Veterans Care Act of 1992 (Public Law 102-585) has ensured that millions of dollars in life-saving treatments purchased by eligible federally funded entities under the Ryan White CARE Act of 1990, as amended, are priced at a much reduced level that is calculated and prescribed clearly in law and policy.

For the purposes of this editorial we are focusing only on the HIV/AIDS universe inclusive of the benefits to the patients and their providers, although the overall 340b program extends well beyond the Ryan White eligible world to other healthcare providers that serve many different patient populations beyond HIV/AIDS.

The 340b program is under serious scrutiny for change by many stakeholders, most notably the pharmaceutical and biologics industry who resist and reject anything such as federal law that erodes their profit margins. Make no mistake about it, their interest in seeing the 340b program “brought under control” is all about profits. “Abuses” can be cited as the reasons for wanting change; however, abuses can be addressed in many effective ways that do not require legislation.

Pill capsule with the words "340b" on it
Source: Rx Showcase
The 340b program provides much more than better pricing to the eligible Ryan White entities; it provides an opportunity for these non-profit agencies to generate revenue that is reinvested back into the HIV/AIDS community in the form of expanded care and treatment capacity. This benefit extends to state Departments of Health (via the AIDS Drug Assistance Programs), hundreds of AIDS Service Organizations and clinics, and their patients nationwide that are already dealing with a ridiculously complex healthcare payer landscape where the Affordable Care Act (ACA) and Ryan White intersect, especially in states where Medicaid expansion has not and is NOT likely to occur anytime in the near future.

In addition, assurances of long term and sustained care and treatment funding from the Health Resources and Services Administration (HRSA) appears to be over or at the very least in serious jeopardy. HIV/AIDS is no longer the public health priority it once was and we must speak out loudly when a threat to stable funding resources such as 340b becomes imminent – and it should be noted that this funding is on the backs of healthy and robust for-profit industry giants.

Again, our voices must be heard and we must not succumb to the influence of an industry that wants to see their profit margins protected. We are the first to acknowledge the excellent simple antiretroviral treatment regimens and options that have been introduced by the pharmaceutical industry starting in the summer of 2006; however, we must also cite this industry for some of the highest profit margins realized by any business sector. So let’s make it known through very effective advocacy that the 340b section of the Veterans Care Act as it pertains to Ryan White eligible entities should be OFF-LIMITS!

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Friday, June 19, 2015

PAN Foundation Issues Call for Case Studies

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Access Network (PAN) Foundation, and in collaboration with The American Journal of Managed Care, has issued a Call for Case Studies. Organizations are encouraged to submit an abstract, which is due by September 15, 2015.

PAN Logo
PAN offers help and hope to people with chronic or life-threatening illnesses for whom cost limits access to critical medical treatments. Since May 2004, PAN has provided more than 467,000 underinsured patients with over $880 million dollars in much needed financial assistance to cover out-of-pocket medical expenses. Many of these patients would have few alternatives without the help of PAN. That’s why charitable donations from both the public and private sector are so crucial to continuing the financial assistance provided by the Foundation.

Summarized Amy Niles, Director of Alliance Development: "Every day, it seems that there is another research study or article highlighting the increasing cost-sharing burden for patients seeking access to critical therapies.  This topic was also a focus of PAN’s Patient Advocacy Roundtable hosted in the fall of 2014."

PAN is interested in learning more about the impact cost-sharing has had on patients being served and its impact on organizations. Importantly, PAN would like to learn about the strategies being implemented, or plan to implement, to address this impact. Click here to download the material that describes PAN’s Call for Case Studies in more detail.

As always, feel free to contact PAN with any questions about this initiative. Amy Niles can be reached by phone at (202) 661-8073 or email at aniles@panfoundation.org.

Friday, May 29, 2015

2015 National ADAP Monitoring Project Annual Report

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Earlier this month the National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2015 National ADAP Monitoring Project Annual Report. The report represents the most comprehensive annual analysis of the AIDS Drug Assistance Program (ADAP), including relevant data on the individuals seeking ADAP services, as well as the services being provided to them.

Photo of the Annual Report's cover
National ADAP Monitoring
Project: 2015 Annual Report
The report provides an overview of the status of ADAPs following the Affordable Care Act (ACA) implementation. It provides 1) background and context, 2) key findings, and 3) detailed charts and tables.

If there is one reoccurring theme that has emerged over the years at the ADAP Advocacy Association's Annual Conference -- and its various summits held across the county -- is the need for more timely data. For example, "There is a lack of baseline data available," was identified as a key assumption in our Final Report from the HIV/HCV Co-Infection Summit held in April 2013.

Even as some organization's are prematurely pushing for the reauthorization of the Ryan White CARE Act, others groups -- including the ADAP Advocacy Association -- want more data on the ACA's impact on the program and the clients it serves before opening up the law.

The bottom line: data is key! To that end, NASTAD should be commended for its work on providing ADAP-related data to the HIV/AIDS advocacy community.

According to NASTAD[1], among the key findings:

  • ADAP enrollment reached its highest level in the program’s history, with over 258,000 clients enrolled in FY2013 (April 1, 2013 – March 31, 2014).
  • ADAPs reported spending over $110.7 million on insurance purchasing/continuation in June 2014; 61,456 (42%) ADAP clients were covered by such arrangements. By comparison, ADAPs used $27.6 million in June 2013 for insurance purchasing/continuation.
  • The majority (63%) of all clients served by ADAPs in June 2014 were reported as virally suppressed, defined as having a viral load that is less than or equal to 200 copies/mL.  By comparison, thirty-percent (30%) of all people living with HIV (PLWH) in the U.S. are reported as virally suppressed.

Of particular interest to the ADAP Advocacy Association, ADAPs continue to play a pivotal role in ensuring low-income patients living with HIV/AIDS with little or no health insurance have access to the timely, appropriate care that they deserve. Whereas ADAP enrollment decreased 3% from June 2013 to June 2014 (210,411 patients enrolled and 204,988 patients enrolled, respectively), it nonetheless provided life-saving medications to hundreds of thousands of individuals.[2]

Not surprisingly, ADAP continue to thrive in the South...especially since most of the states in this region of the country have not expanded their Medicaid programs under the ACA. Among southern states, only Georgia witnessed a decreased in its ADAP enrollment (-0.03%). All of the other states saw increases in their ADAP enrollment, including an 8% increase in Alabama, 4% increase in Arkansas, 7% increase in Florida, 27% increase in Louisiana, 3% increase in North Carolina, 5% increase in South Carolina, 10% increase in Tennessee, 6% increase in Texas, and 4% increase in Virginia. Mississippi didn't not provide data on its enrollment.[3]

Map of the U.S. showing the States that have expanded Medicaid, still debating expansion, and not moving forward at this time.

One thing is clear from NASTAD's 2015 National ADAP Monitoring Project Annual Report: ADAPs continue to provide an important safety net of last resort. This year's report, along with other ongoing data collection reports, provide the patient advocacy community with plenty of ammunition to educate policy-makers on the important of the AIDS Drug Assistance Programs, as well as other programs assisting under-served communities.

CLICK HERE to download the National ADAP Monitoring Project: 2015 Annual Report.

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[1] National Alliance of State & Territorial AIDS Directors, "FINDINGS OF THE 2015 NATIONAL AIDS DRUG ASSISTANCE PROGRAM (ADAP) MONITORING PROJECT ANNUAL REPORT," May 12, 2015.
[2] National Alliance of State & Territorial AIDS Directors, "2015 National ADAP Monitoring Project Annual Report, Table 6: Total Clients Enrolled and Served, June 2013 and June 2014," p. 46, May 12, 2015.
[3] National Alliance of State & Territorial AIDS Directors, "2015 National ADAP Monitoring Project Annual Report, Table 6: Total Clients Enrolled and Served, June 2013 and June 2014," p. 46, May 12, 2015.

Friday, May 15, 2015

Need for National Data on HCV Prevention, Care, and Treatment to Impact the National HCV Epidemic

By: Marissa Tonelli, Senior Manager, HealthHCV Initiative

The Centers for Disease Control and Prevention (CDC) estimates 3.2 million people in the United States are living with chronic hepatitis C infection; 80% of whom will develop chronic liver disease, close to a quarter of whom will go on to develop cirrhosis; and, about 5% of whom will die as a result of chronic HCV infection.[1]  These continue to be estimates as a result of limited national data and the disparate nature of the datasets, which have been barriers to fully understanding the extent and details of the national HCV epidemic. Without a fully resourced, national hepatitis surveillance system, clinical providers and public health officials rely on limited data to inform decision-making. According to the European Association for the Study of Liver Disease (EASL) Recommendations on Treatment of Hep C, inaccurate data, as well as lack of data for specific sub-populations, is an element hindering the design of effective public health interventions and limits the development of provider guidelines.[2]  Collection and analysis of national data related to HCV prevention, care, and treatment is essential to informing effective public health and clinical interventions to impact the epidemic.

HealthHCV Survey
Last month, HealthHCV, an advocacy and education initiative of HealthHIV, launched its inaugural State of HCV CareTM national survey. Findings from this first-of-its-kind national survey will assist in setting the direction of HCV provider and consumer education efforts in 2015 and beyond. The data collected will provide stakeholders with a comprehensive look at how developments in HCV testing, access, and treatment have impacted provider and consumer behaviors around HCV care nationally.

HealthHCV included input from viral hepatitis advocacy groups, payers, and HCV care providers in the development of the survey, which will identify trends in the HCV landscape, and education and training needs of providers to deliver patient-centered, quality HCV care in a variety of care settings, including primary care. In addition, consumer/patient case studies on access and other issues will be identified to inform HealthHCV’s national awareness efforts and will be included in a national HCV access and adherence campaigns conducted by HealthHCV and several partners.

Collecting meaningful data on behaviors of healthcare providers around HCV prevention, care, and treatment will allow us to make better-informed decisions that improve quality of care. Additionally, the aggregate national data being collected will assist public health officials, policy makers, and advocates to see the a picture of HCV prevention and treatment barriers in the US.

To participate in the survey, go to: https://www.surveymonkey.com/s/YW2PLHK.

HealthHCV will present preliminary results from the survey during National Hepatitis Awareness Month activities in May 2015.

If you are interested in distributing the survey through your networks, please contact Marissa Tonelli, Senior Manager of HealthHCV, at marissa@healthhcv.org or 202-507-4726. For more information about HealthHCV, visit www.HealthHCV.org.
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[1] Content source: Division of Viral Hepatitis and National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
[2] European Association for the Study of Liver Disease (EASL), EASL Recommendations on Treatment of Hep C, April 2014

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Friday, April 17, 2015

The Affordable Care Act and the Ryan White Program for Persons with HIV/AIDS

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Protection and Affordable Care Act (PPACA), or the Affordable Care Act (ACA) – also known as Obamacare – continues to unfold and its overall impact is still yet unknown. Most of the law’s major provisions were phased in by January 2014, with other provisions phased in by 2020. The ACA has numerous implications generally on the United State’s health care delivery system, but more specifically on the supports and services afforded to people living with HIV-infection, or viral Hepatitis, under the Ryan White CARE Act. What’s more, ongoing Medicaid expansion (or lack thereof) and the implementation of insurance exchanges will also impact nearly all healthcare providers, as well as their patients.[1]

Unfortunately, people living with HIV-infection have experienced some of the unintended consequences of the law – including discriminatory practices limiting their access to care and treatment. As patients have obtained a basic understanding of the ACA’s provisions, they have also learned numerous ways to assist with their advocacy to combat such unlawful practices.

Cartoon of patient opening a box that reads, "Do It Yourself Insurance Exchange," with a telephone and manual falling out of the box. The manual reads, "Obamacare Handbook."

Among them, patients have received guidance from federal agencies on the law's intersection with existing public health programs, especially as its relates to HIV/AIDS and Viral Hepatitis populations. They acquired information about insurance “adverse selection.” And thanks to many advocacy and legal organizations, they have developed a greater understanding of potential impact discriminatory practices, as well as non-discrimination protections.

One such organization assisting patients is The AIDS Institute (TAI). Last year, TAI and the National Health Law Program (NHeLP) filed a complaint with the federal government against several health plans in Florida, accusing them of engaging in discriminatory practices against people living with HIV-infection. That complaint has already yielded positive results for patients, evidenced by Aetna (one of the companies named in the complaint) agreeing to reduce patient costs for HIV medications nationwide in the qualified health plan marketplace.

“Aetna’s announcement will help ensure that people living with HIV/AIDS throughout the country will have greater access to essential medicines at a more affordable cost,” said Michael Ruppal, Executive Director for The AIDS Institute. “However, there are still many other insurers who are charging patients excessive costs for their HIV medications and this does not impact a patient’s non-HIV medications or other beneficiaries with other health conditions. We look forward to working with Aetna and other insurers to address continuing barriers to care and treatment, including inadequate drug formularies, high cost co-insurance & deductibles, and restricted networks for people with HIV/AIDS, hepatitis, and other chronic health conditions.”[2]

Screenshot of healthcare.gov website, "Find health coverage that works for you."

In an effort to paint a clearer picture of the ACA's impact on patients, TAI has launched a survey for people living with HIV-infection to share their experiences.

This survey is for people who are living with HIV/AIDS and have had an experience with their healthcare that they would like to share. We are especially interested in those individuals that have had changes to their healthcare occur since October 1, 2013. Ryan White, AIDS Drug Assistance Program (ADAP), AIDS Insurance Continuation Program (AICP), Affordable Care Act - Marketplace Insurance Plans, Medicaid, Medicare programs are of particular interest.[3]

To complete the survey, CLICK HERE.

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[1] ADAP Advocacy Association, "Impact of the Affordable Care Act, Medicaid Expansion & Insurance Exchanges on HIV/AIDS & Viral Hepatitis Services," November 6, 2013. 
[2] The AIDS Institute, "Aetna Agrees to Significantly Reduce Patient Costs," March 26, 2015.
[3] The AIDS Institute, "The Affordable Care Act and the Ryan White Program for Persons with HIV/AIDS," April 2015.

Friday, March 27, 2015

They Needed a Second Change to Finish First

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The iconic 1986 Hollywood blockbuster, Hoosiers starring Gene Hackman, was based on the true story of a small-town Indiana high school basketball team that won the state championship despite all of the odds. It was a triumph of the human spirit, inspiring viewers of all ages. The movie's tag line, "They needed a second change to finish first," is a reminder that ordinary people can do extraordinary things.

Image of Gene Hackman talking to his high school basketball players in the movie, Hoosiers
Hoosiers
Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

Last year, a lifetime commitment to fighting healthcare disparities in the South was showcased when the ADAP Champion Award was presented to Kathie Hiers, President & CEO of AIDS Alabama. At the same time, "newbies" Wanda Brendle-Moss and Patrick Ingram were applauded for their groundbreaking work, as they were presented with the ADAP Emerging Leader Award and ADAP Social Media Award, respectively.

Photo of retired U.S. Congressman Henry Waxman being presented with an award by Brandon Macsata
The Honorable Henry Waxman, M.C. (retired) being presented
 with the ADAP Lawmaker Award by Brandon Macsata,
CEO of the ADAP Advocacy Association
Now is the time for you to recognize such a leader by submitting a nomination for the 2015 Annual ADAP Leadership Awards. The ADAP Advocacy Association has issued a Call for Nominations for the following awards:

ADAP Champion of the Year (individual)
ADAP Emerging Leader of the Year (individual)
ADAP Corporate Partner of the Year
ADAP Community Organization of the Year
ADAP Lawmaker of the Year
ADAP Social Media Campaign of the Year
ADAP Grassroots Campaign of the Year
ADAP Media Story of the Year

To submit nominations, go to https://www.surveymonkey.com/s/Q2KLCZB.


Friday, March 6, 2015

An "Oscar" Moment for Ryan White Parts C & D

By: Candace Y. A. Montague, Freelance Health Writer

Patricia Arquette had a carpe diem moment at the Oscars recently where she used her moment on stage to draw attention to an issue she cares very deeply about: equal pay for women. Was it the best place to make bold statements about fair pay? Maybe so, maybe not. But the bottom line is she took hold of that time when she had the attention of a large audience and shined some light on a pressing issue that affects women. March is National Women and Girls HIV/AIDS Awareness month and this is our time to shine some light on an issue that will affect women and families living with HIV. The potential merging of Ryan White Parts C and D.

Patricia Arquette accepts the Oscar for Best Supporting Actress.
Patricia Arquette accepts the Oscar for Best Supporting Actress.
PHOTOGRAPH BY KEVIN WINTER / GETTY

Let's look at Ryan White Part D funding. Ryan White Part D funding provides funding for programs that serve women, infants, youth and families living with HIV. Programs that receive funding from this source provide ambulatory and outpatient care that is centered around women and their families such as primary medical care services, dental services, mental health services, even transportation to bring clinical service providers out into the community. Part C provides similar funding but it's aimed for people living with HIV not just women and their families. It's goal is to provide early intervention services. The President proposes to consolidate these two funding sources in his 2016 budget. This consolidation calls for eliminating Part D services and expanding Part C's budget. Although this seems like a good idea on paper, there are a few important unanswered questions that cause heartburn when we look at them up close.

One part I get stuck on in this proposal is the word "people" in Part C. When previous Part D grantees who serviced women and their families apply or Part C funding, whom will they compete with for precious dollars? What kind of "people" will Part C administrators be looking for to give money? What part of the newly expanded budget is specified for women, children and youth living with HIV? The rules are not quite laid out in the proposal. It's dangerous to have something like funding wide open for applications without a set amount set aside for special populations such as women. This is not to say that other populations don't deserve specific funding. But when one in four people living with HIV are women, the same women that are heads of households across the country, it's pretty clear that they command some extra attention. Also, let's consider that when it comes to keeping these women in care, only about half of them are retained nationally. But Ryan White programs retain 77 percent of the women in their programs. Is there really any question as to why that is?

Protection needs to be the battle cry for NWGHAAD. Women living with HIV need protection now more than ever. We cannot allow language to write them and their needs out of the master plan. Women living with HIV need protection for those dollars that were designated for women-focused services. They need protection for the standing Ryan White Part D programs that won't be eligible to apply for funding if and when this consolidation occurs. They need protection from discrimination by ensuring that all parts of the Ryan White Program will indeed provide women-centered services. Most of all they need the community-based services that have been helping them all along protected from cuts that could cripple their programs.

Wanna get involved? Be a social media advocate. Join in a virtual all-day social media event happening the week after National Women & Girls HIV/AIDS Awareness Day: March 17, 2015.

National Women & Girls HIV/AIDS Awareness Day
This is designed to be a community-wide event and is sponsored by HIV Advocacy and Awareness and Advocacy Without Borders. They are inviting individuals, agencies, clinics, families, schools, support groups, places of worship, ASOs, and any other organizations, especially HIV advocacy groups and agencies focused on social justice, public health, human rights, etc. to join. From midnight to midnight, cover Twitter with tweets about the importance of retaining these critical family-centered HIV services, using the hashtag #SaveRyanWhitePartD along with any other hashtags relevant to your particular tweet (i.e. #womenshealth, #girlslikeus, etc).

And not just Twitter! You can also help promote this issue by sharing about it on other social media platforms (i.e. Facebook, blogs, YouTube, Tumblr, etc). ANYONE can participate; it is important to have both people living with HIV and allies involved.

Make this your Oscar speech moment to advocate for women living with HIV and Ryan White Part D. Carpe Diem!

Editor's Note: Candace Y. A. Montague is the recipient of the ADAP Advocacy Association's 2014 Media Story of the Year Award for her piece in TheBodyDotCom, "Continuing HIV Care for Formerly Incarcerated U.S. Citizens."

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.