the rise in hepatitis C? I’m optimistic but under no illusions. There’s a lot of work to do to build political will for this.”
For states that have taken this step, the next hurdle will be getting local officials to agree to set them up, Raymond said. Kentucky and North Carolina have moved quickly to launch exchanges in several hard hit counties. But other states are still struggling with local opposition from people who say that providing free supplies to drug users only enables them to continue doing what they’re doing.
A Quiet Disease
Compounding the problem is a lack of perceived urgency. Hepatitis C doesn’t kill children or adults in the prime of life. Most people infected with the virus experience no symptoms and the serious liver damage it can cause doesn’t show up for 20 to 40 years after someone is infected.
“HIV is a dreaded disease,” said Brian Strom, who chaired the committee that wrote the National Academies of Sciences study. “Hepatitis isn’t and it should be.”
“It is ignored largely because of a perception that it is tied to drug use and not a threat to the general public,” he said. “The irony is that now that people are starting to worry about drug users because they’re entering the mainstream population, it’s going to help hepatitis get the attention it deserves.”
In Scott County, Indiana, it took an outbreak of HIV in 2015 to motivate then-Gov. Mike Pence to declare a public health emergency and allow a syringe exchange program to be established in the community.
Nearly three years before the outbreak, public health officials were seeing a sharp increase in hepatitis C, and hospitals were reporting increasing numbers of overdose cases, as well as endocarditis (heart infection) and skin abscesses, all signs of injection drug use.
Searching for answers, Indiana public health officials at the time sought advice from a small community in central New York that had quelled a hepatitis C outbreak by establishing a syringe exchange. But doing the same thing in Republican-led Indiana was a non-starter.
Primarily a response to the AIDS epidemic, syringe exchange programs were first established in the U.S. in the mid-1980s as largely underground operations, since most state laws prohibited them. A ban on federal funding of syringe exchanges wasn’t lifted until last year. Today there are nearly 200 programs, clustered mainly in major coastal cities.
But to stanch the recent spread of hepatitis C, a new study funded by the CDC estimates the nation needs at least 2,200 more programs located in the mainly rural areas where young drug users are contracting the disease.
According to CDC data, Indiana, Kentucky, Maine, Massachusetts, New Mexico, Tennessee and West Virginia have hepatitis C infection rates that are at least double the national average. And Alabama, Montana, New Jersey, North Carolina, Ohio, Oklahoma, Pennsylvania, Utah, Washington and Wisconsin have rates that are higher than the national average.
In addition to syringe exchanges, states need to adopt policies aimed at testing more people at risk for hepatitis C and treating more of those living with the virus, said John Ward, director of the CDC’s viral hepatitis program.
Hepatitis C primarily affects injection drug users and members of the baby boomer generation born between 1945 and 1965, when the viral disease is believed to have been transmitted through the health care system before infection control and other precautions were widely adopted.
Testing for the viral infection is spotty. Alaska, Arizona, Connecticut, Hawaii, Iowa, Mississippi, New Hampshire, Rhode Island, South Dakota, Wyoming and the District of Columbia do not consistently report data on hepatitis C to the CDC. Nationwide, tests for the contagious disease are performed so infrequently that the CDC multiplies reported cases by a factor of 14 to estimate the real number of infections.
In a few major urban centers where injection drug use has been prevalent for decades, hospital emergency departments have expanded the scope of their hepatitis C testing.
Until the opioid epidemic started exploding in the Appalachian region of north Alabama, the University of Alabama at Birmingham Hospital wasn’t one of those places.
But in 2015, after droves of people started coming into the emergency department for treatment of drug overdoses, heart valve infections and skin lesions, Galbraith decided to stop asking people whether they were drug users. Instead, he directed his staff to simply tell patients they were going to run a hepatitis C test on their blood unless they objected. Only 15 percent opted out.
What Galbraith found was that 11 percent of baby boomers tested positive for hepatitis C and 7.4 percent of people born after 1965 tested positive, rates that were far above the national average.
Most surprising, Galbraith said, was that 14 percent of young white patients tested positive for hepatitis C — nearly 18 times the national average — while only 3 percent of young black patients tested positive.
He cautioned that the high rates he found in the emergency department do not represent the general population of the Birmingham area because patients who come to emergency departments for care are disproportionately poor and uninsured.
After mapping the residences of the 1,200 young patients who tested positive for hepatitis C in the last two years, Galbraith found that most lived in rural areas of two nearby counties where heavy injection drug use was suspected based on county overdose deaths and hospital admissions data.
In follow-up interviews, he found that the majority of patients who tested positive self-identified as past or present injection drug users, although he estimates that the real rate is closer to 90 percent.
Galbraith used the data to try to convince Alabama lawmakers to approve a bill that would create syringe exchanges in counties with the greatest risk of spreading hepatitis C. It was unanimously approved in the House, but failed to pass the state Senate before time ran out this year. He and other public health advocates intend to try again next year.