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.


[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:

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 or 202-507-4726. For more information about HealthHCV, visit
[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

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.