NVHR ‘Voices 4Hep’ Advocacy Network
Are you a viral hepatitis patient or provider interested in taking action in your community? Join NVHR to connect with fellow advocates, gain support for local initiatives, and access resources to help you have a bigger impact.
Meet Our NVHR Patient and Provider Advocates
As an infections disease physician I have witnessed firsthand the surge in new hepatitis C infections in recent years driven by unsafe injection drug use. Universal hepatitis C screening, in concert with expansion of harm reduction services, will be crucial for stemming the epidemic.
Stacey Trooskin, MD, PHD
Hepatitis C Treater | Advocate
As an obstetrician, universal hepatitis C screening during pregnancy will allow me to know which of my patients has hepatitis C, so that we can get her treated and her baby screened for perinatal hepatitis C transmission. I no longer have to make a stigmatizing judgement on which of my patients ‘should be’ screened for hepatitis C.
Katherine Chappell, MD, MSC
Hepatitis C Treater | Advocate
Right now, there are more than a million Americans who don’t know they are living with hepatitis C. Universal screening will help us find them and get them the cure they deserve to live a healthy and full life. I applaud the CDC for taking this important step to put the U.S. on the path towards hepatitis C elimination.
Michael Ninburg
Hepatitis C Survivor | Advocate
My mother did not know she had hepatitis C when she gave birth to me, so we both carried it for decades unknowingly. If she had been tested for hepatitis C while she was pregnant, she might still be alive.
I could not get cured due to insurance treatment restrictions, so when I was pregnant with my kids I worried about transmitting to them. To prevent vertical transmission, we have to make sure young women can get tested and get cured.
Jessica Ento
Hepatitis C Survivor | Advocate
I know from personal experience that being in your early twenties and getting diagnosed with hepatitis C can be stressful. But it is important to know your status because hepatitis C can be transferred to the people you care about. Once you learn your status, then you can do something about it and get cured.
Ian Roehling
Hepatitis C Survivor | Advocate
I didn’t know I had hepatitis C until I nearly died from it. I spent years in liver failure, developed liver cancer, and ended up needing a transplant. Even though I am cured now ,the disease was caught so late in its course that it stole much of my life, including my #1 passion: teaching. With universal screening I hope no one will have to go through the ordeal I went through.
Karen Hoyt
Hepatitis C Survivor | Advocate
NVHR 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.
Summit Planning Committee
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.
In memory of Orlando Chavez – hepatitis C advocate and champion