Many Massachusetts residents still have no idea what Hepatitis C is, said state Rep. Carl Sciortino, of Medford, adding that the liver-inflaming disease has become a “silent epidemic.”
About 40 advocates lobbied at the State House Tuesday for a $4 million increase in funding for services for those living with or at risk for viral hepatitis, HIV/AIDS and STDs.
A $4 million increase would mark about a 13 percent increase from the approximately $31 million HIV/AIDS prevention, treatment and services budget for fiscal year 2012.
“We have a lot of work to do and that’s what you’re contributing to today,” Sciortino said.
The representative said his mother had lived unaware of her hepatitis for more than 20 years.
Members of the Massachusetts Viral Hepatitis Coalition spoke of the importance of sharing stories of people affected by hepatitis with state representatives before the House Committee on Ways and Means releases its budget proposal next Wednesday.
The issue is not just an individual struggle, but also a public health challenge and issue, said Rebecca Haag, president and CEO of the AIDS Action Committee.
“What we really need to do is . . . care for people and provide services for people currently infected . . . and help them lead healthy, productive lives, just as we do in other diseases,” Haag said, adding, “but we have a second burden here, which is really [to] raise awareness about viral hepatitis and the impact of that.”
Of the 100,000 people with viral hepatitis in Massachusetts, about 1,000 of them are among teens and young adults largely due to the shared use of injection drug equipment, according to the Common Health for the Commonwealth 2010 report.
From 2002 to 2009, the rate of Hepatitis C infection among this age group has doubled.
“The longer we delay testing and the longer we delay screening, the more expensive [and] profound the impact is for those living with it,” Sciortino said.
Gary Langis, 63, of Gloucester, a consumer advocate who said he has been living with Hepatitis C for 26 years, shared his daily struggles “just to get rolling.”
“I think right now the worst thing . . . what really hurts is the fatigue,” Langis said.
He said that hepatitis affects not only those with the disease, but also families and communities as well.
Langis said after his wife died of HIV, he began doing prevention work, volunteering in clinical trials and keeping in touch with state representatives.
“I know this stuff that we do – talking to legislators – makes a difference,” he said.
Funding for hepatitis services was only recently added to the budget line, said Deborah Silva, director of public policy at AAC, but despite the added services, the state budget for HIV/AIDS has decreased.
Attendees were given a chance to introduce themselves to share their reasons for lobbying.
Among them were members of the Massachusetts Nurses Association and AAC Needle Exchange program, one of four state-sanctioned and funded syringe exchange programs that distribute and exchange syringes to active-injection drug users, according to the AAC website.
Daniel Church, epidemiologist and viral hepatitis coordinator at the Massachusetts Department of Public Health, and Kevin Cranston, director of the Bureau of Infectious Disease at the DPH, said they attended in support of the lobbyists as they made their legislative visits.
“As state employees, we can’t lobby, but we’re here to support those of you who can,” Cranston said. “This is a time of incredible challenge and incredible opportunity, and it’s time to make it clear to our state representatives about the opportunities that stand before us.”
Langis said sharing stories is an easy thing to do.
“All you have to do is change one person’s life,” he said.
State representatives need to better understand these challenges and it all starts with one group of people, Haag said.
“It’s the basic works of politics. It’s the basic beginnings of a movement,” Haag said. “I know some of you are frustrated because you’ve done this before, but you know what? That can’t stop us. . . . I know many of you have gotten knocked down and now you have to climb back up, but where else is there to go?”
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