Nothing About Us Without Us: The Importance of Centering the Voices of Patient Advocates in the Public Health Response to Viral Hepatitis

By Alyssa Kitlas September 11, 2019

One month ago, the National Viral Hepatitis Roundtable (NVHR) hosted its first ever Patient Summit with the theme of “Nothing About Us Without Us.” Nearly 100 hepatitis C patient advocates from across the country joined to share their stories, strengthen advocacy skills, and identify opportunities to lead the way in our national response to viral hepatitis. You can follow the conversation on Twitter by searching #Voices4Hep. I had the pleasure of helping facilitate a discussion about building coalitions and working with health departments with Ronni Marks from the New York State Hepatitis C Elimination Task Force/Hepatitis C Mentor and Support Group (HCMSG) and Robin Lord Smith from the Maryland Hepatitis Coalition/ Help4Hep. It was an incredible meeting to be part of and the room was filled with both support and a strong sense of community. You could feel the excitement as patients shared their experiences and provided invaluable critique and suggestions on how to eliminate hepatitis in communities across the United States. Many patient advocates are currently part of their state or local elimination planning processes and others are looking for ways to become involved with this work.

“The voice of the patient advocate is as important if not more important than other voices at the table. If health departments don’t include the patient perspective, they are missing essential insight and information. The Patient Summit was an incredible success and we are already seeing results with patient advocates connecting with state and local health departments and other key partners. This is just the beginning….the patients are coming to the table.” - Robin Lord Smith from Maryland Hepatitis Coalition and Help4Hep

I sat down with the new Director of NVHR, Lauren Canary, to discuss the importance of engaging people with lived experience in hepatitis work and ways that health departments can support their state and local patient advocates.

Q: Congratulations on hosting the first ever HCV Patient Summit. Can you describe what that meeting was like and why it was such a monumental occurrence?

A: Thanks for being with us, Alyssa! You and the rest of the planning committee did an amazing job putting this historic summit together. I felt honored to be in the room, and honestly quite emotional hearing from patients—I was wavering between feeling devastated at the suffering many have experienced at the hands of this disease, but simultaneously uplifted and empowered by the strength and optimism this group represented. These hepatitis C survivors are framing NVHR’s priorities, and I do think this meeting was just the first turning point in a new approach to this epidemic that centers patient voices.

Q: Why is it important that health departments engage patient advocates and center the voices of people living with and/or cured of HCV in their work?

A: In my previous public health experiences I had been involved in work that treated patients as passive components of any given public health response. This meeting really opened my eyes to how flawed of an approach that is. Not only did I learn more in 36 hours about the patient perspective than I had in my 5 years at the Centers for Disease Control and Prevention (CDC) working on this disease, but I also realized that some survivors are truly willing to engage strategically at all levels. Viral hepatitis programming is not just underfunded, but often out of touch with the ‘on the ground’ experience of the people it serves. Patient and survivor advocates can help inform the public health response and can offer strength and visibility to programs.

Q: This is an exciting step for the HCV patient advocacy community. Does anything like this exist for people living with HBV and if so, how are you working to engage these patient advocates in the next steps following this meeting?

A: The Hepatitis B Foundation and Hepatitis B United have done incredible work to involve patients living with hepatitis B in the response to the disease; from sharing patient stories, to involving them in lobbying at the capitol, and even sheparding their involvement in hepatitis elimination planning.  Going forward, I am going to push for involvement of viral hepatitis survivors in both jurisdictional elimination planning and in advising the CDC. In fact, Dr. Carolyn Wester, Director of the Division of Viral Hepatitis, engaged with patients at both the Hepatitis B Summit and our Hepatitis C Patient summit. She was encouraged to explore mechanisms by which a ‘community board’ of sorts could be formed at CDC.

Q: Speaking of next steps- what are the next steps for this group and how can people living with and cured of hepatitis get involved if they weren’t at the first convening?

A: The attendees of the HCV Patient Summit will be undergoing training in the coming months to gain skills that will bolster their ability to share their story to enact change. They will be ready to participate in legislative advocacy, to partner with health departments to inform elimination plans, and to connect with others via social media. This is just the beginning and we are thrilled to have more patients on board, so anyone else who would like to be involved can join our email list and stay tuned for opportunities to engage! We also welcome public health and provider advocates to join our work.

Q: How can health departments better support their patient advocates and ensure the voices of people with lived experience is centered in their programs?

A: I am so glad you asked! I will be joining NASTAD’s newer hepatitis staff call in September with patient advocates to discuss this very topic and we will also be co-hosting a webinar with NASTAD in October. Both opportunities will give health departments ideas about how to engage with viral hepatitis patients and survivors.

Recommendations for Health Departments

  • If you do not have an ongoing relationship with patient advocates, build one. NASTAD and NVHR can help with this, so don’t hesitate to reach out to hepatitis@NASTAD.org and/or Lauren@NVHR.org.
  • Involving patients doesn’t have to be formal, such as through a community advisory board or planning council—although that would be ideal. But an important starting place could be having a one-on-one meeting to see how you both can support each other in your work or having a larger listening session to bring together patients from across your jurisdiction. The patient voice is a critical perspective in hepatitis work in general, but particularly in conversations around elimination planning.
  • Think about hiring peer educators and navigators in your programs. Peers are able to support individuals diagnosed with HCV in ways that other educators and navigators cannot, since there is incredible power in having someone who can relate to your experience and understand the nuanced challenges you are going through. The key here is paying peers since often these positions have been on a volunteer basis. You can watch this recorded webinar titled HCV Peer Navigators: Keeping it Real on the New York State peer navigator program for ideas about how you can do this in your jurisdiction.
  • Consider starting a coalition in your state or city if you do not have one. You could benefit from meeting regularly and sharing information with partners including patient advocates.
  • Encourage hepatitis C survivors who are interested in being involved with NVHR to sign up here.

If you would like support in working with patient advocates in your community or forming a coalition to address hepatitis, please email hepatitis@NASTAD.org.