data collection graphic

On September 19th, the Hepatitis C Policy Project hosted a meeting at the Georgetown University Law Center in Washington, DC to discuss strategies to improve data collection and case surveillance for Hepatitis C in the United States. Thought leaders from a range of public health backgrounds, – including physicians, patient advocates, researchers and federal agency directors – convened to discuss the current state of Hepatitis C data collection, the specific data and statistical information on the Hepatitis C epidemic that is most needed to address the issue, and pragmatic strategies and policy recommendations that can be proposed to improve Hepatitis C data collection and surveillance within the constraints of limited fiscal and logistical resources.

The need for improving Hepatitis C data and surveillance stems from the increasing prevalence of the disease in the U.S. population, despite the emergence onto the market of curative drugs for the disease.  Hepatitis C is responsible for more deaths in the U.S. than all of the other 60 reportable infectious diseases combined, and it is estimated that between 2.5 and 4.7 million Americans are infected with the illness. However, the fact that this number is such a broad-range estimation elucidates the problem of Hepatitis C surveillance in this country. There is no clear picture of what this disease looks like within the population, due in large part to gross under-resourcing of interventions for Hepatitis C prevention and treatment, which includes the collection and analysis of data on infection rates, risk factors, treatment and cure rates, and patient retention in care. Without comprehensive and reliable statistics, it is all the more challenging for advocates and public health authorities to justify their requests for increased allocations for Hepatitis C interventions; but this statistical profile cannot be built without the allocation of sufficient fiscal and personnel resources. It is a classic Catch-22.

The September 19th conversation brought forth a wealth of information on the current methods of Hepatitis C data collection, gaps in the effective aggregation of data from different sources, and practical suggestions for improving data collection and analysis based on lessons learned from strategies used to address other health issues, such as HIV/AIDS. A brief will be developed from the information gathered at this meeting that distills the various proposals into a comprehensive policy recommendation that emphasizes the importance of having high quality, reliable data and surveillance strategies that accurately identify the full scope of this public health crisis. The brief will be used to influence the legislature to increase funding allocations for Hepatitis C initiatives, and is part of the ongoing national strategy to eliminate Hepatitis C in the United States by 2030.