Doctors for years have urged people with very specific risk factors — a history of intravenous drug use, needlestick injuries, or a medical record that includes a blood transfusion or organ transplant— to be tested for hepatitis C.
But now, the US Centers for Disease Control and Prevention is recommending that all baby boomers be tested for the disease, saying that people born between 1945 and 1965 have the highest rate of infection and could benefit from early treatment.
But another organization, the US Preventive Services Task Force, last month issued a draft recommendation suggesting doctors only “consider” screening all baby boomers. The group, a government-appointed panel of doctors and health policy experts, gave the practice of universal screening a C grade, indicating that testing an entire generation may have little benefit.
The conflicting advice has upset some advocates of broader hepatitis C screening, who say the recommendation undermines efforts to respond to a "silent epidemic." An increasing number of people are dying from the disease, and treatments, while costly, are improving.
Doctors and patients may be reluctant to talk about hepatitis C risk factors, some of which come with negative connotations. By giving its full endorsement only to risk-based testing, the Preventive Services Task Force "continues the stigma that is associated with the disease," said Martha Saly, director of the National Viral Hepatitis Roundtable, a coalition of organizations focused on hepatitis C that is primarily funded by drug makers but with an independent steering committee.
While some projections put the number much higher, the CDC estimates that 3.2 million people in the United States are living with hepatitis C and the majority likely do not know they are infected. Over time, the infection can damage the liver, causing cirrhosis or cancer.
About three of every four people infected with hepatitis C were born between 1945 and 1965, and baby boomers account for a majority of viral hepatitis-related deaths. Many grew up before hepatitis C was identified in 1989, and before rules were put in place to screen blood and tissue products used in medical procedures. Before HIV awareness developed in the 1980s and 1990s, less attention was paid to the dangers of sharing needles or having unprotected sex — a possible but less common means of transmitting hepatitis C.
Further frustrating the advocates of universal testing is the fact that the task force recently recommended that all adults be screened for HIV. More people die each year as a result of hepatitis C than of HIV.
In 2006, the most recent year for which data are available, 377 people in Massachusetts died of any cause within three years of being diagnosed with hepatitis C. With HIV, 45 people died within three years of diagnosis, said Dan Church, an epidemiologist and viral hepatitis coordinator at the state Department of Public Health.
"What our data tend to suggest is that people get into care fairly late," after the hepatitis C has progressed and damaged the liver, he said. Wider screening among baby boomers could lead to more people being treated before the infection does its worst harm, Church said.
Medicare does not cover screening for people without symptoms or risk factors, a spokesman said. It would be required to cover the test, which can range in cost from around $12 to $100, if the task force changed its C grade for baby boomer screening to at least a B, indicating a moderate to substantial benefit. That's something Saly and others are pushing for.
In Massachusetts, the Medicaid program covers any lab test for hepatitis C, and several major health insurers said they cover the cost of screening baby boomers or soon will.
The test looks for hepatitis C antibodies. If the test comes back positive, patients must have follow-up tests to determine whether they remain infected. As much as 25 percent of those infected may clear the virus from their body without treatment.
For others, treatment options are growing. New drugs released this year, including Incivek, made by Cambridge-based Vertex Pharmaceuticals, dramatically increased the chance of curing the disease. More are in development.
But the benefits of screening to get people into treatment earlier is not entirely clear, said Dr. Michael LeFevre, a vice chairman of the US Preventive Services Task Force and of the Department of Family and Community Medicine at the University of Missouri. There is not enough research to show that treatment prevents problems that could come later in life as a result of having been infected, he said.
Treatment can cause serious physical and psychological side effects. The US Food and Drug Administration last week issued a warning that Incivek can cause severe, sometimes fatal, skin reactions. And there is still no way to distinguish between those for whom the disease will progress to cirrhosis or cancer and those who will experience few effects of infection, LeFevre said. That's an important distinction from HIV. "The certainty with which we know [those with HIV] will suffer the consequences from that is much higher," he said. "It's not exactly a fair contrast."
Still, some providers are working to implement the CDC recommendation now, and working to destigmatize the screening. Dr. Chris Bositis, clinical director of the hepatitis C program at Greater Lawrence Family Health Center, said the ability to explain to patients that they are being offered a hepatitis C test based on their birth date alone, rather than assumptions about their past behavior or medical history, simplifies the conversation.
The screening becomes "very routine, like being tested for your blood sugar or your cholesterol or any other preventive maintenance thing we do in primary care," said Dr. Virginia Palazzo of Belmont Medical Associates, who offers the test to baby boomers who come in for a physical exam.
The CDC's recommendation, if implemented, could be expensive. Testing baby boomers and treating those who are infected with the newest drugs could add an estimated $19 billion to health care costs, according to an analysis funded by the agency and published in the Annals of Internal Medicine.
But that cost in relation to quality years of life gained through treatment is comparable to some other preventive measures already common in primary care, such as cholesterol screening, the study found.
For people like Paul O'Hara of Boston, such a calculation is no abstraction. In 1996, a former girlfriend contacted O'Hara to say she was infected and he later tested positive. After beginning to notice his strength waning as a result of the disease, the 57-year-old recently completed a grueling 11-month treatment that included the drug Incivek. Treatment caused gastrointestinal trouble and paranoia. He lost 20 pounds of muscle, he said, but today the virus is undetectable in O'Hara's body.
O'Hara talks readily about his prior intravenous drug use. In addition to reaching people like him who have not been tested before, the CDC's policy is aimed at those who may be unaware they have risk factors, or are reluctant to talk about them. O'Hara said it makes sense to test more baby boomers for hepatitis C.
"I really didn't know anything about it until I contracted it," he said. "Then I ended up knowing everything about it."