On March 9-10 I participated in “Hepatitis on the Hill” in Washington, DC. The event was organized by Hep B United (HBU), the National Viral Hepatitis Roundtable (NVHR) and the Hepatitis Appropriations Partnership (HAP), and brought together both hepatitis B and C advocates. This was an incredible opportunity to work together, network, and advocate on the Hill.
I have been a hepatitis B patient advocate for nearly two decades, and although I do not consider myself politically savvy, I understand the importance of getting out there in front of my legislators to educate staff about hepatitis B, and let them know how HBV impacts their constituents. Unfortunately, many constituents are unaware of their status or are reluctant or unable to speak up about hepatitis B due to the associated stigma and cultural or language barriers.
This year is one of the best opportunities we have to raise the profile of viral hepatitis, as a result of the President’s proposed FY16 budget to increase the CDC, Division of Viral Hepatitis’ budget to $62.8 million. This budget increase should ensure there are resources and funding available to implement needed programs, including strengthening state capacity and increasing public health networks to detect new infections and improve access to viral hepatitis testing and linkage to care and treatment.
The need for national hepatitis B surveillance data is critical. It’s a vicious cycle – you can’t get the funding to support programs without the numbers, yet you need funding to support an appropriate surveillance system. Hepatitis B desperately needs a national surveillance system that is culturally and linguistically appropriate to ensure those disproportionately impacted by hepatitis B are counted. Once we have identified those that are chronically infected through screening programs, we need to ensure there is linkage to care, and the infrastructure to support the unique needs of those impacted by this epidemic.
Provider education is also essential. Through my outreach with the Hepatitis B Foundation, I am very aware of the general lack of knowledge among providers. For those that are tested, labs are often misinterpreted, and of course there are MANY more out there that are not being tested, or no follow-up for those who learn they are infected. At Hepatitis on the Hill I spoke with a medical student, who was disappointed they dedicated only 10 minutes of lecture time to hepatitis B. Providers in the field may have even less information.
There are still an estimated 800-1,000 infants infected with HBV each year in the United States. The President’s proposed budget would focus on identifying gaps and improving policies and programs for preventing mother-to-child transmission of hepatitis B.
Be sure you contact your State Representatives and Senators and let them know hepatitis B is important YOU. You don’t have to be politically or technically savvy to make your voice heard on Capitol Hill! Please call, email, write, or leave a voice mail message to let your legislators know that hepatitis B is important to you! Click to get the details and step-by-step instructions to walk you through the process.