Maine has hepatitis epidemic Report says thousands unwittingly have C virus

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More than 10,000 Maine people suffer from a life-threatening liver disease they don’t even know they have, according to a report the Maine Bureau of Health is expected to release today in Augusta.

“Hepatitis C Infection in Maine” is the result of the health bureau’s three-year effort to track the rates of infection in Maine and identify ways to address the “silent epidemic” that the National Center for Infectious Diseases estimates infects up to 3.9 million people nationwide.

Basing projections on the national statistics, the Maine health bureau estimates that 15,000 Mainers are infected with the hepatitis C virus and that 85 percent of those people will develop chronic infection. Twenty percent will ultimately develop cirrhosis, a degenerative scarring of the liver, according to today’s report.

But, owing to the slow progression of the disease and the lack of outward symptoms, only 1,500 Mainers – 10 percent of those infected – know they have the virus, according to the health bureau.

And the cost of medical care for hepatitis C is growing exponentially. Maine Medicaid expenditures for individuals diagnosed with the disease were more than $12 million in 2000 – an average of $16,000 per patient. And that is just the beginning, according to the report.

“Maine has arrived at a crucial juncture – a crossroads – in the hepatitis C epidemic in our state,” the report states.

Today’s report will be released just before a 1:30 p.m. hearing on L.D. 686, a bill directing the Bureau of Health to develop a comprehensive plan to detect and treat hepatitis C.

Sponsored by Rep. Joseph Bruno, the Raymond Republican and House minority leader, the legislation lays the groundwork for what the bureau believes is needed to help stem the spread of the disease.

The bureau has identified six priorities: increasing public awareness of the disease; accessible hepatitis C counseling and testing; community outreach; improving the quality of care for people with the infection; ensuring access to affordable care, including mental health and substance abuse treatment services; and refining and extending the process for gathering data on infection rates.

The health bureau initiated mandatory reporting on chronic hepatitis C infections in 1997. As of the end of 1999, just over 1,500 cases were reported. To date, 65 percent of those infected are men and 70 percent are people ages 39 to 49.

Adjusting for population, the Maine counties with the highest rates of infection are Knox (47 cases), Androscoggin (109 cases), Washington (38 cases) and Cumberland (267 cases). Penobscot County has 91 cases, Hancock County 27, Aroostook 24, Somerset 22, Waldo 19, and Piscataquis 8.

The rates for Androscoggin and Cumberland County – particularly the Portland metropolitan area – probably reflect both a high burden of disease and the increased propensity of physicians in those areas to begin testing in the mid-1990s, according to the health bureau report.

Knox County’s high rate is directly related to the state prison at Thomaston, where most of the county’s infections were diagnosed, according to the report.

Nationally, prison inmates have a hepatitis C infection rate that is nine times higher than the general population, both because of risky behavior such as injection drug use and tattooing and body piercing with contaminated makeshift materials, according to the report.

In Washington County, the number of hepatitis C virus test reports rose dramatically in 1999 and most were associated with a patient history of injection drug abuse, according to the report.

Washington County’s problem with injection drug use is also reflected in the reports for 2000, which the bureau is still analyzing, according to an earlier interview with Assistant State Epidemiologist Geoff Beckett.

Beckett said Washington County had at least two reports of acute hepatitis C, both in people under age 25. The disease rarely presents as acute, and those reports are a “red light” that tells the bureau there are many more cases out there, Beckett said.

Many people who inject drugs share needles, cotton, spoons or other paraphernalia, and statistically, 85 percent of those who share needles become infected, approximately half in the first few months, Beckett said.

And a history of injection drug use – even if it was for a short time 30 years ago – accounts for 54 percent of the Maine cases where physicians assessed the risk factor, according to the health bureau report.

The next-highest identified risk – accounting for 16 percent of Maine cases – was blood transfusions before the early 1990s, when blood products began being screened for hepatitis C.

People exposed to blood products as a result of their occupation – including service as military field medics – and infection as a result of heterosexual or homosexual sex with a person infected with the virus accounted for much smaller percentages of the Maine transmissions.

And hepatitis C is the No. 1 killer of people living with HIV infection because the virus progresses more rapidly, leading to higher rates of liver damage and liver failure, according to the report.

There are an estimated 950 to 1,300 Mainers living with HIV, making this group of people a population of special concern, along with injection drug users and prison inmates, according to the report.

Of the slightly more than 1,500 Mainers diagnosed, the risk factor was not identified in 20 percent of the cases.

Treatment for hepatitis C to delay the progression of the disease – and, if possible, eliminate it altogether – is complex and challenging for both the patient and the provider, according to the report.

The most effective treatment – which reduces hepatitis C viral loads to undetectable levels in about 30 percent of people treated – is a combination of drugs, including interferon.

But not everyone is eligible for the treatment and it produces significant side effects, including depression. More support is needed for both patients and their families, according to surveys conducted during the bureau’s assessment of the disease.

A few dozen clinicians, primarily gastroenterologists, provide medical care for most hepatitis C patients in Maine and no one is assuring that a program of high-quality continuing education is available to Maine’s primary health care, behavioral health and social service professionals, the report concludes.

The report was developed by a steering committee comprising members from the health bureau’s Hepatitis C Working Group and participants from the Maine Center for Public Health, the Department of Corrections, and the Department of Mental Health, Mental Retardation and Substance Abuse Services.