NVHR Patient Summit

 
 
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The National Viral Hepatitis Roundtable (NVHR) will be hosting a hepatitis C (HCV) patient summit in early 2019. The summit, NVHR’s first national patient gathering, will bring together 100 patients recently cured of or currently living with HCV with an emphasis on those who have not had experience engaging in other advocacy programs. By establishing a platform for 100 HCV patients to engage in dialogue, NVHR will work with participants to develop shared goals as well as address the need for greater patient engagement and leadership to ensure the delivery of high quality of care for patients diagnosed with HCV. To ensure the demographics of attendees reflect the demographics of the HCV epidemic, the patient summit will prioritize recruitment of individuals from disproportionately impacted and marginalized communities. To learn more or provide financial support, please contact NVHR at info@nvhr.org.

We will release applications for patient participation in the summit in September 2018. To receive updates about the summit, please join our listserv by visiting www.nvhr.org/join.

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 7 years ago, she started her own organization – The Hepatitis C Mentor and Support Group. She now travels around the country educating providers and helping create support groups so Hepatitis C patients have access to information and support services to help them manage and overcome Hepatitis C. 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