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. 

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