About two dozen health services providers and other Syracuse-area stakeholders gathered Wednesday to discuss strategies to make hepatitis C screening and care more of a priority in New York State. About 200,000 New Yorkers are living with chronic hepatitis C, and half of those infected are unaware of their status. Policy analyst at the grassroots group VOCAL-NY Clifton Garmon says the state needs to know hepatitis Cis a problem.
"It's killing a lot more people than HIV in this country," Garmon said. "It is one of the leading infectious diseases that we should be concerned about. And that there's a cure. There's no reason why this isn't becoming a priority. It should be a priority.”
Garmon says most-at-risk is the baby boom generation born between 1945 and 1965 who had blood transfusions.
"Hep C hadn't been discovered, so the blood wasn't being screened," Garmon said. "It's been more than 30 years since then, so some of those symptoms are finally showing up, and the adverse effects of the virus are starting to take its toll on the population."
He says the virus can live in the body for decades quietly damaging the liver. The other at-risk population is injection drug users. Director of prevention services at ACR Health in Syracuse Erin Bortel says many are what she calls “extremely functional addicts” who use their syringe exchange program.
"We have teachers, nurses, and lawyers coming in for these services," Bortel said. "You have people maintaining careers, who have families, who have responsibilities, outside of their addiction, and are still able to function...mostly."
Bortel says then there’s the challenge of getting them proper medical care.
"Those people specifically don't want the stigma of being labeled in an electronic medical record as an injection drug user," Bortel explained. "Therefore, they avoid medical care, which creates problems in the long run, especially if they're not being screened for hepatitis and they're actively using injection drugs."
Or, transgender patients injecting hormones. Bortel says many doctors hesitate to even take on hep C patients because insurance companies aren’t very helpful.
"Just the paperwork burden of trying to advocate for someone to get hep C treatment is creating a process that is not incentivized for the doctor to follow through with because they can't reimburse for that specific paperwork process," Bortel said.
VOCAL-NY will help local providers lobby elected officials for change, as well as organize local events to raise awareness about hepatitis C.
