A group of researchers launched a new website Wednesday that lays out a roadmap to curb the spread of hepatitis C.
HepVu is the result of a public-private partnership aimed to help the estimated 3.9 million Americans who currently have or have had hepatitis C — a potentially deadly infection that can lead to liver cancer or cirrhosis. While interest in the disease has elevated due to the related surge in opioid abuse, policymakers and public health officials have been hampered by a lack of research on the disease, the investigators behind HepVu said. If left unchecked, treatment can cause major financial strain for providers — treatment for hepatocellular carcinoma in patients with hepatitis C is more than $176,000 per patient, according to a 2015 study published in the journal Cancer.
In 2012, hepatitis C-related deaths surpassed all other reportable infectious diseases combined and continued to rise in 2013 and 2014, according to the CDC, which partnered on the project. The disease is also the leading cause of death in liver cancer and cirrhosis patients, said Dr. Patrick Sullivan from the Rollins School of Public Health, the project's principal investigator.
HepVu has an interactive map that depicts state-by-state breakdowns of the prevalence of hepatitis C and how many deaths, which researchers hope will help combat the spread of the disease. The map's data is the first standardized state-level data quantifying the concentration of hepatitis C and mortality rates, Sullivan said.
"We hope this data is used by policymakers and public health officials to make confident estimates on the extent of services and resources needed to combat this disease," he said.
Some policy-level changes could include increasing the investment in public health infrastructure so that community-based hepatitis testing strategies can be sustained and expanded as well as implementing strategies to improve testing in primary care settings, HepVu researchers said.
There have been major advances in hepatitis C treatment in recent years, including expanded access to screenings under the Affordable Care Act, a recent curative treatment breakthrough and the federal government funding syringe disposal programs, according to the HHS' viral hepatitis action plan released in February. But the lack of adequate data to monitor hepatitis C's spread locally and nationally is the most crucial limitation in effective treatment, the plan said.
"Consequently, outbreaks may remain undetected and health officials may not realize the scope of the problem," the plan said. "Our nation's opioid epidemic is fueling increases in new viral hepatitis infections because of injection drug use and needle sharing."
Approximately 30,500 new cases of hepatitis C occurred in 2014 in the U.S., an increase from an estimated 16,500 new cases in 2011, according to the CDC. Most of the new cases stem from people who use injectable drugs, the agency said.
Half the people who live with hepatitis C aren't aware of it, Sullivan said, and the data on HepVu might lead them to get screened.
"It lays out roadmap to where prevention services are most needed," Sullivan said. "We haven't had the right types of data until recently — this is an apples-to-apples comparison of past and current infection by state."
People born between 1945 and 1965 have a higher chance of contracting the disease, research shows. Baby boomers are especially prone to the disease, which puts a financial burden on the government through Medicare and Medicaid reimbursements.
As far as geographic prevalence, there were an estimated 1.56 million people who have or have had hepatitis C in the South, the highest of any region.
The western U.S. had the highest rate of people with the disease — 10 of the region's 13 states had an estimated hepatitis C antibody prevalence rate above the national average of 1,670 hepatitis C cases per 100,000 people. Eight states — California, Texas, Florida, New York, Pennsylvania, Tennessee, Ohio and Washington — made up more than 50% of all people living with evidence of hepatitis C. HepVu's interactive maps use data from advanced modeling techniques generated by Emory University's Coalition for Applied Modeling for Prevention, a project supported by the Centers for Disease Control and Prevention.
While the data helps portray an accurate picture, it is only the first step, Sullivan said.
"We hope this is the first step in the conversation," he said. "Public providers and policymakers need to know about this epidemic."