NVHR Patient Summit

 
 
Share this
 
 

patient summit


On July 29th and 30th 2019 NVHR held a first-of-its-kind hepatitis C Patient Summit in Atlanta, GA. Nearly 100 hepatitis C survivors came together from almost every state across the country to share their stories, learn new advocacy skills, and identify opportunities to improve hepatitis prevention, screening, treatment access, and elimination policy. The patient voice is central to NVHR's mission as a national coalition working to eliminate hepatitis B and C in the United States. The Patient Summit served as a launch pad for an engaged network of patient advocates to mobilize and fight to together to end hepatitis C in every state, and nationwide.

 

Outcomes From this Historic Event

  • Brought together patients together from across the United States to build community and support capacity-building for grass roots advocacy;
  • Mobilized and activated a network of patient advocates ready to engage in broader hepatitis C policy and programmatic efforts;
  • Highlighted the need for better inclusion of the patient voice and leadership in national hepatitis programs and elimination efforts;
  • Initiated the process of forming state-wide and local hepatitis C coalitions; and,
  • Provided an opportunity for survivors to share their story and learn skills relevant for advocacy.

 

See press release from the event here.



 

The summit Planning Committee is comprised of 8 members who have living experience of HCV and are engaged in patient advocacy. These 8 members are providing oversight and helping NVHR staff execute the summit.

Chris Abert
Chris became a Hepatitis C advocate after understanding his diagnosis during casual conversations with his peers. He started an outreach program that provided syringes and advocating for Hepatitis C testing. Currently, he serves as the Director of the Indiana Recovery Alliance – North American Syringe Exchange Program which provides harm reduction resources. He hopes the attendees of the summit can develop a recommendation report that can clearly define next steps and strategies to change policy.

 


 

Dan Berrner
Dan became a Hepatitis C advocate as a way to give back acknowledging the resources he had access to impacted his outcome. As a Clinical Research Coordinator at the University of California, San Francisco for the Hepatitis and HIV Research Center and a facilitator of support groups, he is committed to improving prevention, testing, education, and treatment within the Hepatitis C community. He hopes the summit will provide individuals an opportunity to connect on a 1-on-1 level to share experiences and learn from one another.

 


 

Ronni Marks

Ronni Marks picture 
Ronni became a Hepatitis C advocate due to the lack of education and support she experienced while being diagnosed and treated. For 18 years, she ran a support group at the NYU Medical Center and 9 years ago, she started her own organization – The Hepatitis C Mentor and Support Group.  She now travels nationwide educating and training to help create The Circle Model, so Hepatitis C patients have access to information and supportive services, including harm reduction strategies, helping them manage and overcome Hepatitis C and/or co infection with HIV. She hopes the summit will strengthen the Hepatitis C community and provide a platform for patient voices.

 


 

Peter McLoyd

Peter McLoyd picture 
Peter was already an advocate and peer educator for HIV and became a Hepatitis C advocate after being one of the first patients to enroll into a Hepatitis C clinic in Cook County. Through his role as an advocacy coordinator at the Chicago’s Ruth M Rothstein CORE Center, he helps empower patients so they can actively participate in their health care. He hopes the summit will help lift the voices of the marginalized populations affected by Hepatitis C.

 

 


 

Gloria Searson, MSW

Gloria Searson picture 
Gloria became an advocate for Hepatitis C after being unable to obtain treatment due to the lack of awareness and resources surrounding Hepatitis C. Driven by her passion to serve and encourage people in need, she founded the Coalition on Positive Health Empowerment (COPE) which works to eliminate Hepatitis C through advocacy, education, patient screening, counseling, and peer support. She hopes the summit will provide attendees an understanding of the landscape so they feel empowered to advocate on their behalf.

 

 


 

Robin Lord Smith
Robin became a Hepatitis C advocate after relying on online support groups to help understand her own Hepatitis C diagnosis. Paying it forward, she worked on a helpline to support Hepatitis C patients navigate the healthcare system to understand their diagnosis, consider treatment options, and assess options for barriers they may be experiencing. In 2008, she started the Maryland Hepatitis Coalition through which she increases awareness regarding Hepatitis C and provides patient education and resources. She hopes the summit will create a visible Hepatitis C network with a call to action.

 


 

Alicia Suarez, PhD

 Alicia Suarez picture
Alicia became a Hepatitis C advocate after struggling with her own fears of disclosure due to the stigma surrounding Hepatitis C.  She not only lends her voice to Hepatitis C awareness, but also conducts research on marginalized populations and her dissertation research explored illness experiences with Hepatitis C.  She hopes the summit will provide a forum in which the common themes (both positive and negative) among everyone’s experiences can be shared to learn how to better support the Hepatitis C community.

 


 

Louise Vincent, MPH

Louise Vincent headshot Louise became an advocate for Hepatitis C from the loneliness surrounding her experience. By supporting and educating her peers on a 1-on-1 level, she became one of the pioneers in harm reduction movement in Greensboro, NC which eventually lead to the creation of the Urban Survivors Union. She hopes the summit will provide an opportunity for patients to connect with others to reduce the sense of loneliness and stigma surrounding Hepatitis C.

 

 

 


 

 

In memory of Orlando Chavez – hepatitis C advocate and champion