Thursday, March 31, 2016

Hepatitis on the Hill

By: Emily Stets, Program and Policy Associate, National Viral Hepatitis Roundtable (NVHR)

Imagine a room filled with over a hundred people from around the country, all wearing name badges, mingling in small groups and with purple folders tucked under their arms. Purple shoulder bags emblazoned with Hepatitis on the Hill are scattered around the room, straps hanging off the backs of chairs, and many participants have donned little Hepatitis on the Hill pins on their lapels.

This type of event may not seem uncommon in HIV advocacy, where inspiring events like AIDSWatch constitute the nation’s largest constituent-based national HIV/AIDS advocacy event. However, such events have only just begun to take off for the viral hepatitis community, where the urgent need for national stakeholders to address the viral hepatitis pandemics has heightened in the past few years.

Hepatitis B and C are distinct blood-borne viruses transmitted through blood-to-blood contact. Left untreated, the viruses attack an individual’s liver, and represent the leading cause of liver cancer in the United States.[1] The CDC’s March 2016 Report to the Nation on the Status of Cancer indicated that while the rate of most cancers in the U.S. have declined, liver cancer has increased 2.3% between 2003 and 2012. The report notes hepatitis C as a major contributing factor to liver cancer, and cited that 25% of people with hepatitis B develop serious liver problems, including liver cancer.

For many reasons, there is an urgent need for the viral hepatitis movement to unite and bring advocates together on a national stage. Alarmingly, recent data from the CDC has shown that deaths associated with hepatitis C surpassed deaths associated with all fifty-nine other notifiable infectious diseases combined.[2]

Rising Mortality Associated with HCV in the U.S.
Chart showing Hepatitis C infection rates rising, as other infectious disease rates declining.

The opioid and heroin epidemics are fueling the spread of new hepatitis B and C infections among people who inject drugs (PWID) across the country. Though many officials focused on HIV outbreak in Scott County, Indiana, a CDC report shows that 85% of PWID who contracted HIV were also coinfected with hepatitis C. Due to similar routes of transmission, studies show that about 25% of all people with HIV also have chronic hepatitis C, and 10% of people with HIV are living with hepatitis B.

Hepatitis B disproportionately affects the Asian American/Pacific Islander (AAPI) community.  While AAPIs make up less than 5% of the total U.S. population, they account for more than 50% of Americans living with chronic hepatitis B. We also continue to see perinatal transmission of hepatitis B despite having a safe and effective vaccine to prevent the disease. Community organizations struggle to address these vast disparities within the populations they serve with finite resources.

To address the necessity of uniting advocates, three national coalitions took action. This March, Hep B United (HBU), the Hepatitis Appropriations Partnership (HAP), and the National Viral Hepatitis Roundtable (NVHR) coordinated an event similar to AIDSWatch called Hepatitis on the Hill (HOTH). Over a two-day period, over one hundred constituents from twenty-seven states descended on Capitol Hill to educate their legislators on the impact of hepatitis B and C in their communities.

Throughout the event, advocates from across the nation engaged in conversation about the importance of screening, education, and treatment access, as well as the barriers they face in addressing these issues in their communities.

A key part of HOTH included networking, connecting advocates with resources, and framing constituents’ experience with viral hepatitis for legislators. In practicing their stories through role-play, participants prepared to ask their legislators to:
  1. Support increased funding for the Division of Viral Hepatitis at CDC in the FY 2017 LHHS Appropriations Bill.
  2. Urge legislators to maintain the modified syringe language included in the FY 2016 Appropriations Bill, which allows syringe service programs to use federal funds to support existing organizational efforts, though not to specifically purchase syringes.
Another highlight of the event was the participation of Dr. John Ward, the Director for the Division of Viral Hepatitis (DVH) at the CDC, and Dr. Rich Wolitski, the Acting Director from the Office of HIV/AIDS and Infectious Disease Policy (OHAIDP). Participants had the opportunity to engage in conversation with these officials, and a special forum allowed advocates the opportunity to provide Dr. Wolitski with input on the planned update of the HHS Viral Hepatitis Action Plan.

These parallel events in the viral hepatitis and HIV communities highlight the overlap between these movements that serve populations living with certain infectious diseases, particularly with HIV and hepatitis B and C. The rates of HIV, HBV, and HCV coinfection remind us that these movements are not separate from one another, but interconnected. At this stage of these pandemics, there is enormous potential for collaboration and resource-sharing to combat HIV and viral hepatitis.

We encourage you to join the fight and explore how HIV and viral hepatitis coinfection impacts the population you serve. There are many ways to connect with others working in hepatitis! Here are a few:

Want to become more involved in hepatitis and appropriations?

Visit the Hepatitis Appropriations Partnership’s (HAP) website to learn more!

Want to connect with other organizations working in viral hepatitis?

Join NVHR and follow us on Facebook and Twitter!

Want to be involved with hepatitis B?

Visit for more information, and follow HBU on Facebook and Twitter!

[1] Perz, J. F., Armstrong, G. L., Farrington, L. A., Hutin, Y. J., & Bell, B. P. (2006). The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of hepatology, 45(4), 529-538.
[2] Ly, K. N., Hughes, E. M., Jiles, R. B., & Holmberg, S. D. (2016). Rising Mortality Associated with Hepatitis C Virus in the United States, 2003-2013.Clinical Infectious Diseases, ciw111.


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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