Get Tested, Get Cured: Hepatitis C Infections Rising Among 20-39 Year-Olds
Viral hepatitis is a serious, preventable public health threat that puts people who are infected at increased risk for liver disease, cancer and death.
The World Health Organization (WHO) has called for a 90 percent reduction in new hepatitis infections and a 65 percent reduction in deaths by 2030. Unfortunately, rates of hepatitis C cases – one of the three most common hepatitis viruses – nearly tripled between 2011 and 2018. Today, an estimated 2.7-3.9 million people in the U.S. have hepatitis C, with about 57,000 acute infections diagnosed in 2019. Two-thirds of cases now occur among people aged 20-39, the age group most impacted by the opioid crisis.
Lorren Sandt, Caring Ambassadors
“We are on the wrong road to hepatitis C elimination,” said Lorren Sandt, executive director of Caring Ambassadors. “Concurrent with the nation’s opioid crisis, we are now facing a syndemic of continued spread of hepatitis C among people who inject drugs.”
Barriers to Hepatitis C Elimination
Caring Ambassadors is a non-profit organization dedicated to eliminating viral hepatitis and specifically hepatitis C. Sandt co-founded the program in 1999, when hepatitis C research and treatment were in their infancy. Standard western therapy was successful in less than 28 percent of those treated.
Today, effective clinical interventions have reduced morbidity and mortality associated with viral hepatitis. Accurate diagnostic tests detect hepatitis C infections years before symptoms develop. And hepatitis C therapeutics, such as direct-acting antiviral (DAA) therapies, can cure hepatitis C infections with an efficacy rate greater than 95 percent.
Despite these significant medical advances, Sandt remains concerned. “We are facing dual challenges of a public health infrastructure that is not funded to support elimination and a general public that is hesitant to get tested,” she said. “Until recently, it’s been very difficult for people with hepatitis C to access treatment unless they have significant cirrhosis and demonstrate continued sobriety – two factors that have created significant disparities for younger adults.”
Sandt noted that treatment costs can also be a barrier to starting treatment.
“We encourage everyone who has tested positive for hepatitis C to take advantage of assistance programs available through the pharmaceutical companies supplying the therapies as well as through organizations such as the HealthWell Foundation’s Hepatitis C grants that provide up to $30,000 of medication copay or insurance premium assistance for qualifying individuals,” Sandt said.
Bringing Hepatitis C Out in the Open
Sandt called hepatitis C a “silent disease” and said increased awareness of the disease is crucial to eliminating it. She has spent years advocating for increased hepatitis C funding at the state and federal level, holding over 1,000 meetings with elected officials; training 150+ advocates to participate in “Hill Days;” sponsoring numerous roundtables with advocates, law enforcement, and legislators; and supporting the Oregon Viral Hepatitis Collective of key stakeholders in the fight against hepatitis C infection.
“Hepatitis-related illness kills someone in the world every 30 seconds,” Sandt said. “Yet there is an alarming lack of funding and political will focused on prevention and treatment. We simply cannot eliminate this disease if we don’t fund it.”
Caring Ambassadors also supports public testing events, like the one they ran for 13 years straight at the annual Waterfront Blues Festival in Portland (prior to the COVID pandemic).
“We tested between 300-600 people each year at the Festival,” Sandt said. “We always received great support from the musicians performing there, who would encourage people to get tested. We’ve worked with other musicians on awareness campaigns as well, including Grammy Award-winning blues musician Curtis Salgado, and Bruce Conte from Tower of Power. We are grateful for the support of the musician community, which has been hard-hit by this disease.”
On World Hepatitis Day (July 28), Caring Ambassadors joined the World Hepatitis Alliance in its Hep Can’t Wait campaign. The campaign’s theme stresses that the world shouldn’t wait to act on viral hepatitis, even during the COVID-19 crisis. In addition to a social media campaign, Caring Ambassadors recognized World Hepatitis Day by lighting up Portland’s Morrison Bridge.
Patients Need to Advocate for Their Health
Being out in the open about hepatitis C also means having frank conversations with care providers. Sandt encourages people to advocate for their own health and not get talked out of getting tested and treated. Caring Ambassadors offers a tool to help: Hep C Discussion Point™, a private online questionnaire designed by medical experts that generates a customized list of topics for people to use as a guide in talking with their doctor about their hepatitis C health care.
Another patient tool, My Choices©, is designed to help those with hepatitis C recognize and act upon what they can control in their health care journey to achieve optimal healing. The tool contains elements of a guidebook, health planner, journal and activity book and promotes an integrative approach to health and medicine.
“When we launched My Choices, about 70 percent of those with hepatitis C weren’t eligible for treatment,” Sandt explained. “We needed to encourage that 70 percent to make meaningful lifestyle and wellness choices that would keep them alive until the cure came. Today, people turn to My Choices for goal tracking, self-advocacy and empowerment, often working on one issue or section at a time if they’re not quite ready to tackle everything. It’s important to remember that your holistic health and wellness need to continue even after you’re cured.”
Integrating Hepatitis C into Medical Care
In addition to raising awareness about hepatitis C among patients and the public at large, Caring Ambassadors strives to raise visibility for the disease among the medical community. They have worked with health systems, hospitals and community clinics, teaching professionals at all levels – administrators, physicians, nurses, social service providers and outreach workers – how to integrate hepatitis C into their practices.
“Our training covers everything from what Hepatitis C is, how to test for it, and how to diagnose it, to care protocols, care resources, and even how to apply the correct billing codes,” Sandt said. “We also focus health provider training on harm reduction measures for patients who use injectable drugs. We want providers to have the knowledge and tools they need to create micro-elimination projects within their clinics and systems.”
Listen to Their Stories
Get tested. Get cured. It’s a simple message that bears repeating, according to Sandt, and one that has inspired people impacted by the disease to speak out on their behalf. Caring Ambassadors, in partnership with StoryCorps (an initiative dedicated to preserving and sharing humanity’s stories in order to build connections between people and create a more just and compassionate world), has collected dozens of powerful stories from everyday people impacted by hepatitis C, along with reflections from artists, musicians and poets.
“We invite everyone to listen to these inspirational stories of personal empowerment and take from them what they need to start taking control of their own lives,” Sandt concluded. “Now is not the time to wait.”
Additional Hepatitis C Resources
U.S. Department of Health and Human Services. Viral Hepatitis National Strategic Plan: A Roadmap to Elimination. Accessed 6/14/21.