Hepatitis C in New York State
Former Assemblyman Kenneth Zebrowski was sent by doctors to the orthopedist in 2006 for a nagging pain in his side.
Only a few months later, while still in office, Zebrowski died at the age of 61 from liver failure and cirrhosis, caused by hepatitis C.
He contracted the disease from a 1973 blood transfusion, according to his son, Assemblyman Kenneth P. Zebrowski, D-New City, who immediately succeeded his father in representing the 94th Assembly District.
Hepatitis C is a contagious liver disease that causes fibrosis of liver cells and is spread through blood contact.
Despite being diagnosed in 1996 with hepatitis C, the elder Zebrowski didn't start to exhibit symptoms, similar to the flu, until 10 years later.
Up until his last few living months, "at no time, no one told him what to do, not even recommending any types of treatment," said Zebrowski, who added that, by the time doctors matched the symptoms to the prior diagnosis, "it was already too late for my father."
Since his father's death, Zebrowski has not only followed in his father's footsteps in the Legislature, but has dedicated himself to hepatitis C awareness and advocacy, a disease that affects 300,000 New Yorkers, according to Dr. Brian Edlin, an epidemiologist at the Center for the Study of Hepatitis C.
A small victory for Zebrowski and other activist groups, including Status C Unknown, a nonprofit organization that provides hepatitis C support and education, is the inclusion of a $1.1 million line item in the Medicaid Redesign portion of the 2012-2013 budget for hepatitis C screening and treatment.
Despite this funding specifically being dedicated to hepatitis C treatment and screening, it is in the budget as part of a larger $104.5 million appropriated for the AIDS Institute, according to Morris Peters of the Division of Budget.
The AIDS Institute may ultimately designate even more money for the benefit of hepatitis C, said Peters, pointing out many programs they run would benefit both hepatitis C and HIV/AIDS patients.
The Medicaid Redesign Team suggested including $2.1 million in the budget towards hepatitis C care, coordination and service integration by adding hepatitis services to already established clinics, primary care practices and substance abuse settings, with $1.5 million coming from the state budget and the rest being federally funded.
"I think it's great that it made it in the final budget. I was happy that the governor originally put it in ... and at the end of the day, all three sides recognized that it was money well spent," said Zebrowski, pointing to "exciting new treatments" as reason for funding necessity.
"We know the budgets are tight, but hepatitis C is taking a personal and financial toll on our state," said Shari Foster, founder of Status C Unknown, who praised the inclusion.
Chairman of the Assembly Health Committee and member of the Medicaid Redesign Team Richard Gottfried, D-Manhattan, said including hepatitis C care in the Medicaid program is "enormously important."
Foster said this year's funding will allow the state to adopt a plan to "combat the increasing incidence" of hepatitis C in New York state with education, testing and treatment programs.
The Centers for Disease Control and Prevention estimates hepatitis C accounts for 8,000 to 10,000 deaths each year in the United States, with Edlin placing the number at 15,000, more than the number of deaths attributed to HIV.
"The numbers crossed in 2007," said Edlin.
According to Edlin, the beginning stages of the virus, known as acute hepatitis C, can be fought off by the immune system. Centers for Disease Control and Prevention said approximately 15 to 25 percent of people who contract hepatitis C recover from the virus without treatment. If the infection is not cleared from the body, it will develop into chronic hepatitis C that will last for years.
New "extremely effective and exciting" treatment for hepatitis C is available, said Edlin and is mostly successful when given during the acute phase of the virus. But it is rarely detected in the acute phase because there are no symptoms. Usually, said Edlin, infected persons don't see symptoms of the virus until 20 to 30 years later.
"It is unconscionable that thousands of New York state residents are sick and dying every year because they don't know they have hepatitis C, when it can be identified by a simple blood test and treated," said Foster, who almost died from internal bleeding when she went into liver failure because she didn't know she had hepatitis C.
Hepatitis C is most prevalent among the baby boomer generation, said Edlin, because before 1992, blood wasn't tested for the disease. In fact, it didn't even have a name according to Shari, who said it was called "Not Hep A, Not Hep B."
Hepatitis C deaths "will only continue to get worse because baby boomers are reaching the point where they have been infected for 20 years," said Edlin.
The Centers for Disease Control and Prevention suggest those who have a had a blood transfusion or organ transplant before 1992, recipients of clotting factor concentrates before 1987, former and current injection drug users, person with HIV and children born to hepatitis C positive mothers should be screened for the virus.
Colleen Flanigan RN, MS
Director, Viral Hepatitis Section
New York State Department of Health
ESP, Corning Tower Room 429
Albany, New York 12237
0Hepatitis C Hotline: 1-800-522-5006