Hepatitis C: The Uncounted Disease

The Gastroenterology Department at Dartmouth Hitchcock Manchester gets a lot of referrals for Hepatitis C patients.

CUT Let me get your blood pressure // sfx

Today Bonnie, an energetic woman in her late 30's, is here for a check up. She started interferon treatment for Hepatitis C about two months ago but she's known she's carried the virus for seven years.

CUT I was getting more pains in my liver, weakness, the tiredness so I basically took a chance and went on interferon.

Bonnie listens as Dr. Aydamir Alrakawi reviews her latest test results.

CUT Your liver enzymes are looking good and your virus counts are down. You started at 1 million and now it is 10,000.// That's very good.

If Bonnie's progress continues, her viral count will fall below detectable levels and she will be considered cured, which would make her doubly fortunate. With current treatments, the cure rate is only about 50%.

Dr. Alrakawi says many of his patients are in much worse shape than Bonnie was when she first came to him.

CUT Most people get infected in their late teens and twenties and then it takes them another 20-30 years to develop liver disease and that's when they present to us. Some of them progress to cirrhosis and some develop complications and end up dying from the disease.

The Centers for Disease Control forecast that the number of deaths related to Hepatitis C will triple in the next ten years. By all indications, the impact on New Hampshire's hospitals and its people is already underway. NHPR asked the New Hampshire Center for Public Policy Studies to run an analysis of the state's hospital discharge data base starting in 1996 and going as far forward as the data permit, 2003.

In that time, the number of visits by patients with Hepatitis C skyrocketed. It increased on average, 24 percent every year. Total hospital charges rose from under 2 million dollars a year to over 17 million – nearly an eight fold increase in 7 years.

But while the state of New Hampshire tracks other forms of hepatitis, it doesn't track this one. And Hepatitis C has caught some of the people on the front lines by surprise.

CUT Ok, and just make sure you take your meds and get something to eat, Ok? call me and we'll talk it through.

At Lebanon's HIV/AIDS counseling center, ACORN, a case worker checks in with a client. Acorn's Director, Tom Mock, knew very little about Hepatitis C, until, about two years ago, it became obvious that he needed to learn a lot.

CUT : 100% of people who worked with in the previous 3 years who had died were all co-infected with Hep C.

Mock went to the web to learn about the disease. He learned that today, injection drug users are the people most at risk for new infections. However, anyone, anyone at all, who received a blood transfusion before 1992 is considered at high risk. Until then, there was no test for Hepatitis C and upwards of 200 thousand people a year were getting infected. Mock says he turned to the web because state officials couldn't help him.

CUT I first turned to the health dept. but there wasn't a lot they could tell me. Especially in NH. I asked what they could tell us about the prevalence of Hep C. They couldn't tell me.

The concern about Hepatitis C is not new. Back in 1998, the CDC issued a recommendation that every state keep track of the virus. In 1999, the CIA wrote a national intelligence estimate that said "the most dangerous known infectious diseases likely to threaten the United States over the next two decades will be HIV/AIDS, hepatitis C, TB, and new, more lethal variants of influenza."

Dr. Jose Montero recently took over as New Hampshire State Epidemiologist. Montero says no one in the public health division doubts the importance of Hepatitis C. The state prison now tests every new inmate. Community health clinics are fully aware. Montero says there's no plan to add Hepatitis C to the state's reportable disease list because those reports would pick up infections that took place a long time ago. The state's appropriate focus, Montero says, is on stopping the spread of the disease.

CUT who do we target? People who will be exposed today or people who have already been infected and we have no power to change their level of infection? Our goal is to prevent new infections. We have nothing we can do in public health in people who is already infected. What we need to know is what is the risk, how many is newly infected so we can impact that number.

The state has spent more than two years putting together a draft Hepatitis C Strategy. Under that plan, the state would do much more to reach out to front line workers who come in contact with high-risk populations. It would try to get a better idea of who is infected through surveys at HIV and sexually transmitted disease clinics.

The guiding principal behind the state's strategy is to prevent the spread of the disease. But some physicians doubt it will have much effect on the rising impact of the disease today. The president of the New Hampshire Medical Society, Dr. Gary Sobelson, says he sees no reason for the state not to track Hepatitis C. Sobelson says, that would provide key information needed to slow the progression of the disease in chronically infected patients.

CUT It would seem to me that we need to have more understanding about the incidence of this illness, effect of treatment, tracking people and their access to care. The other diseases that we track to protect public health and address health needs, are at least parallel and in some cases less important than Hep C.

New Hampshire is one of only a handful of states that don't track the virus. But state officials here resist such a change with a vigor normally reserved for matters of tax policy. And there is at least a thematic connection. State epidemiologist Montero says not only would adding it to the reportable disease list add little value, it would be expensive, requiring two full time people at the department of health and human services.

CUT when we put a disease on the list, we investigate every single case that comes, that's the reason. It allows them to identify the risk. where they got infection and who was exposed. That is why I say if we collect data, it has to have a purpose. Not just as a repository of data, not for disease control purposes.

What Montero describes is the standard approach. But all of the other New England states track Hepatitis C and not all of them contact each and every person who is identified. They keep count they say, to track their progress and to boost awareness of the disease. Because in government, that which is not counted can easily slip through the cracks.

For NHPR News, I'm Jon Greenberg.