May Is Hepatitis Awareness Month
This month, Real World Health Care focuses on Hepatitis C, a viral disease that affects 2.4 million people in the U.S. and infects about 50,300 new people each year, according to the Centers for Disease Control and Prevention (CDC). For some, hepatitis C is a mild illness lasting a few weeks. However, most people who get infected with the hepatitis C virus develop a chronic infection that can lead to life-threatening health problems like cirrhosis and liver cancer.
In this article, we’ll shine a spotlight on two organizations committed to serving the hepatitis C community: National Viral Hepatitis Roundtable and Community Liver Alliance.
What Is Hepatitis C?
Hepatitis is an inflammation of the liver, a vital organ that processes nutrients, filters the blood and fights infections. When the liver is inflamed or damaged, its function can be affected. While hepatitis can be caused by heavy alcohol use, toxins and certain medications or medical conditions, it is often caused by a virus.
Hepatitis C is a common type of viral hepatitis (along with hepatitis A and hepatitis B) and is spread through contact with blood from an infected person. Today, most people become infected with the hepatitis C virus by sharing needles or other equipment used to prepare and inject drugs. About half of those with hepatitis C do not know they are infected, according to the CDC.
There is no vaccine for hepatitis C, but it is curable. The best way to prevent hepatitis C is by avoiding behaviors that can spread the disease, such as injection drug use. Getting tested for the disease is important because treatments can cure most people in 8-12 weeks. CDC recommends one-time hepatitis testing of all adults 18 and older and of all pregnant persons during every pregnancy. Regular testing is recommended for those with risk factors such as injection drug use.
NVHR: Giving a Voice to People with Viral Hepatitis
The National Viral Hepatitis Roundtable (NVHR) is a national coalition working to eliminate viral hepatitis in the U.S. and improve the lives of those affected through advocacy, education, and support to national, state and local partners.
One of NVHR’s key tenets is to amplify the voices of people who have lived experiences with viral hepatitis. To that end, NVHR launched #Voices4Hep in November 2019. This network of 200+ patients, providers and community advocates provides a way to connect, gain support for local initiatives and access resources.
“Receiving a diagnosis of hepatitis C can be an emotional and isolating experience,” said Daniel Raymond, Director of Policy at NVHR. “Often, people aren’t sure who they can talk to, especially because of the misunderstandings and stigma surrounding the disease. Voices4Hep gives people in the viral hepatitis community a forum for sharing their stories in a way that will be respected and will help them transcend any internalized shame around being sick.”
Voices4Hep also seeks to inform policy makers about the need for leadership, resources and reform. To that end, Voices4Hep members participated in a 2021 Viral Hepatitis Policy Summit & Hill Day, hosted by NVHR and partner organizations in February. More than 100 advocates from around the country participated in the virtual event, making it the largest one ever.
The Voices4Hep network also will be active during Hepatitis Awareness Month by sharing patient stories and building awareness through social media – a campaign designed to inspire the hepatitis C community to take action around treatment access and affordability.
“Treatment coverage under Medicaid can vary considerably from state to state,” Raymond said. “Patients also face treatment barriers in terms of the extent of liver damage required to initiate treatment, how long they have abstained from controlled substances, and even the type of doctor they must see for treatments. These roadblocks aren’t based on best evidence or guidelines, but unfortunately they persist.”
Community Liver Alliance: Expanding Services Nationally
The Community Liver Alliance (CLA) was established in Pittsburgh in 2013. Originally focused on the greater Pittsburgh community, CLA has grown to become a national organization and today serves the liver disease community from coast to coast. It is dedicated to supporting local communities through liver disease awareness, prevention, education and research.
“CLA provides support and education to those experiencing liver illnesses, their caregivers and health professionals,” explained Suzanna Masartis, Chief Executive Officer, Community Liver Alliance. “The vision also includes educating the community at large on liver wellness and advocating to government representatives to ensure that issues surrounding liver disease, screenings, education and research funding are recognized and supported.”
Like many organizations over the past year, CLA pivoted to virtual events and services, focusing on those that would be the most meaningful and provide the most value to the community. For example, it expanded its Hepatitis C Virus (HCV) Coalition into new states while continuing to focus heavily on Central Appalachia, a seven-state region hard-hit by the opioid crisis. A Central Appalachia hepatitis elimination summit is in the planning stages for Summer 2021.
CLA also has taken its provider education program virtual, allowing it to train many more health providers nationwide than would be possible with in-clinic visits. Provider training is crucial, said Masartis, to help reach the World Health Organization’s goal of 80 percent viral hepatitis elimination by 2030. That goal is not attainable, she said, without allowing primary care providers to screen and treat for the disease – a practice currently limited to specialists.
“We’re working diligently to increase the number of primary care providers who can screen and treat those with hepatitis C,” said Masartis. “We’re excited about empowering primary care doctors to make a real difference in their patients’ lives, and they are excited to embrace this new way of serving their patients.”
The CLA is conducting a month-long campaign for Hepatitis Awareness month in May to provide information about viral hepatitis A, B, C, D and E. Their objective is to educate the public on viral hepatitis risk factors, available treatments and therapies, encourage screening, promote linkage to care and provide patient and provider resources through print, radio and social media.
To connect with CLA during Hepatitis Awareness Month, visit its Facebook and Twitter feeds. You can also join the CLA’s Knock Knock Challenge, a fun awareness campaign designed to raise money to knock out liver disease.
Hepatitis C: An Epidemic within a Pandemic
Both Masartis and Raymond pointed to the unique challenges faced by those with hepatitis C and substance use disorder during the COVID-19 pandemic. A National Institutes of Health-funded study found that people with substance use disorder are more susceptible to COVID-19 and its complications. In addition, liver patients fare far worse with COVID-19 than other populations, according to the CDC and health researchers.
“The pandemic has created socially isolated environments that are ripe for drug use, relapses and overdoses,” said Masartis. “With the rise in drug usage, we expect to see viral hepatitis increase among this cohort.”
In the early days of the pandemic, many hepatitis C patients were afraid to visit clinics for screening and treatment, leading to delays in diagnosis and care, and increasing the incidence of costly emergency department visits, according to Raymond. Moreover, he said that treatment costs – even small copays – have been challenging as people lost their jobs or were furloughed.
“On top of these factors, many health services providers previously dedicated to hepatitis elimination were redirected to COVID-focused work,” said Masartis. “We saw treatment centers and harm reduction initiatives like syringe services reduce their availability or close down, further exacerbating the difficulties patients face in accessing care.”
A survey supported by NVHR, HepVu and key partner organizations supports Masartis’s concerns, finding that:
- Nearly two-thirds of community-based organizations providing viral hepatitis services have received inadequate or no funding to adapt services during COVID-19.
- More than half (52 percent) of community-based organizations had to furlough or lay off staff or reduce operations due to COVID-19.
- The percentage of community-based organizations offering hepatitis B/C screening dropped by nearly 60 percent.
“Hepatitis C has long been underfunded,” concluded Raymond. “Immediate, ongoing and long-term investments in public health infrastructure and workforce are necessary to ensure that viral hepatitis programs can continue to provide critical services into the future if we are to achieve viral hepatitis elimination in the United States.”
A Message from Our Sponsor
If you or someone you know has hepatitis C and needs financial assistance to afford treatment copays, the HealthWell Foundation may be able to help. Visit our Hepatitis C Fund page to learn more about the fund and determine eligibility.