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Opt-out testing for hepatitis C seen as key to fighting disease

Testing for other diseases is part of routine care

Lanouer Haboubi, 54, a peer worker who has had hepatitis C, works in a mobile clinic that locates and reconnects people who have fallen out of care.
Lanouer Haboubi, 54, a peer worker who has had hepatitis C, works in a mobile clinic that locates and reconnects people who have fallen out of care. (Ralph Hodgson for CQ Roll Call)

LONDON — At King’s College Hospital in the south of London, anyone who has blood drawn in the emergency department is automatically tested for hepatitis B and C.

Posters throughout the facility inform patients that the screening is routine, part of a new approach helping find and treat thousands of people who might otherwise never know they have the viruses, which can be fatal if left untreated.

“We pick up a lot of people who would never have actively accessed this kind of testing themselves — women in later life, people who’d never think they’re the sort of person who would have this condition,” said Dr. Oliver Mizzi, a consultant in emergency medicine at the hospital.

Across England, 90 hospitals now have opt-out testing for hepatitis, leading to thousands getting treatment and putting the country on the path to meeting its goal of eliminating the hepatitis C virus as a public health threat by 2030.

As Congress considers legislation to establish a national hepatitis C elimination program, experts say expanding opt-out testing in emergency departments is an indispensable way identify undiagnosed infections.

“We have populations at high risk,” said Dr. Aimee Moulin, an emergency medicine doctor helping lead an opt-out testing initiative in California. “We have populations who are not traditionally connected to traditional outpatient sources of care. If you want to see people who are not really seen well and frequently in their primary care office, the emergency department is a great place to access those folks.”

An estimated 2.2 million to 4 million adults in the U.S. have hepatitis C. Because the disease often has no early symptoms, only about one-third are aware they are infected.

The virus spreads primarily through exposure to infected blood, most commonly through sharing needles or other equipment used to inject drugs. But despite a cure being available for more than a decade, less than one-third of people will access timely treatment, according to the Centers for Disease Control and Prevention.

Left untreated, hepatitis C can lead to serious complications, including liver damage, cancer and death.

That’s why England viewed emergency departments as a critical setting for reaching people at higher risk for the disease, including people who inject drugs and older adults who may have been infected decades ago and remain unaware of their status.

Emergency departments also have much of the infrastructure needed to test and treat patients: laboratories, clinicians who can prescribe treatment and a setting that is open around the clock, Moulin said.

But while emergency departments in the United States were among the first to pilot opt-out hepatitis C testing in the 2010s, it never became widespread, said Dr. John Ward, director of the Coalition for Global Hepatitis Elimination and former director of the CDC Division of Viral Hepatitis.

“It never got fully caught on,” Ward said.  

Unlike HIV testing — where the CDC has long recommended routine opt-out screening in health care settings, including emergency departments — hepatitis C testing has struggled to become part of routine emergency care.

One challenge is what happens after someone is diagnosed following an emergency department visit.

“It is a target-rich environment,” Ward acknowledged. “But it’s hard to follow them and get them interested and link them to care.”

Peers and navigators

That’s why England has embedded peer workers in every part of its hepatitis elimination program, including in emergency departments.

Peers are individuals who have undergone hepatitis C treatment and are trained to help others access care, especially populations considered hard to reach, like people who use drugs. They can take people to appointments, bring them their medicine and perform the necessary testing.

“Peers are able to be comfortable in uncomfortable environments that might scare other staff,” said John Gibbons, specialist outreach worker for the University College London Hospitals NHS Foundation Trust.

Gibbons tracks down patients who tested positive for the virus but never started treatment, including people identified through emergency department records. He manages a team that makes phone calls, visits homes, draws blood and helps patients navigate care.

“We understand the lingo, we know what it feels like to be sick from drugs, and we have a longer fuse when it comes to engagement,” Gibbons said.

In California, state officials and advocates are attempting a similar approach.

In 2023, the California Department of Public Health, in partnership with the Public Health Institute’s Bridge program, launched a $15 million initiative to implement opt-out testing for hepatitis C, HIV and syphilis in 28 emergency departments statewide.

From the outset, it put a significant focus on the use of patient navigators, who perform a similar role to peers, by following up with patients after discharge — by phone, mail or in person — to provide education, arrange care and help overcome barriers like transportation or lack of phone access. 

“That was a really key part of this program to ensure that emergency departments have this funding for the navigator,” said Cynthia Rohrer, who leads the Bridge program. “It’s really critical to have that navigation piece covered and reimbursable by insurance.”

But that doesn’t always happen.

While the Affordable Care Act requires insurers to cover certain preventive services recommended by the U.S. Preventive Services Task Force without cost-sharing, reimbursement for similar care delivered in emergency departments is not guaranteed and subject to varying insurer rules.

In 2020, the task force recommended one-time hepatitis C screening for adults ages 18 to 79, with periodic testing for those at increased risk — triggering no-cost coverage for patients with insurance in primary care settings.

But reimbursement is not guaranteed for emergency departments providing opt-out hepatitis C testing.

Insurers also often do not reimburse the patient navigators, peer workers or community health workers employed by emergency departments to conduct outreach after discharge and link people who test positive to treatment.

“It’s one of our big challenges,” Moulin said. “The way the United States conceptualizes treatment is everybody should have their primary care doctor, and everything flows through your primary care doctor. But there is this group of people who are kind of living outside that system.”

In 2024, California allowed hospitals to bill Medicaid for community health worker services provided in emergency departments.

Waiting on Congress

To take the program nationwide would require funding and reimagining how the health care system treats preventive care in emergency departments, Moulin said.

Bills sponsored by Sen. Bill Cassidy, R-La., and Rep. Mariannette Miller-Meeks, R-Iowa, would establish a hepatitis C elimination program and would provide federal support for expanding screening, diagnosis, treatment and linkage-to-care efforts — including in settings such as emergency departments where many undiagnosed infections are found.

It would also require the Health and Human Services secretary enter agreements to purchase point-of-care tests and distribute them to grantees. Efforts are underway to mark up the bill in the Health, Education, Labor and Pensions Committee, chaired by Cassidy, before he leaves Congress at the end of this session. Portions of the bill could end up in a must-pass year-end spending package.

“This is a once-in-a-generation opportunity,” said Tim Leshan, chief external relations and advocacy officer at the Association of Schools and Programs of Public Health. “We have a cure. We have a realistic path toward eliminating hepatitis C. We just need Congress to act.”

England has found that making hepatitis C a routine part of bloodwork in emergency departments has reduced stigma, both among patients and health care professionals.

Patients are not asked to separately consent to hepatitis B, hepatitis C and HIV testing, a dated practice that contributes to stigma, experts say. That means at King’s College Hospital, 97 percent of eligible emergency department patients receive testing.

“If you’re sick enough to come to the emergency room to need blood tests, this is a routine test and these are treatable and curable diseases,” Mizzi said.

Most patients do not know they have been tested unless they receive a positive result. While some initially react with frustration, clinicians say those reactions often stem from the shock of learning they may have an infection.

“Hep C is increasingly being eradicated, so our kind of ‘mental block’ on doing testing was denying people that opportunity,” he said.

This report is part of series made possible by a reporting fellowship sponsored by the Association of Health Care Journalists and supported by The Commonwealth Fund.

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