Cost, fear of side effects key barriers to HCV treatment
Cost, insurance and apprehension of side effects were the leading barriers to hepatitis C treatment, according to results from a recent survey of individuals either cured or not cured of HCV.
Hepatitis C in America was the third annual survey by Health Union and primarily included community members from HepatitisC.net. The survey design was to evaluate the community’s perceptions of HCV and HCV treatment, how those perceptions may have changed over time, and to engage newly diagnosed people.
“We find that these are a lot of the questions they want to be asked because they might not be asked these questions by anybody else and they like to see how they stack up against others,” Sara Hayes, MPH, Senior Director of Community Development at Health Union, told Healio.com/Hepatology. “It’s nice to take a survey, see the results, and say, ‘Wow, I thought I was the only one experiencing this’ — to know that a large percentage of other people, in your community, are going through exactly what you’re going through.”
From May 3 to June 26, 2017, 296 individuals cured of their infection and 313 individuals with current HCV infection responded to the survey. Most respondents were women aged between 50 and 60 years, or the baby boomer generation.
While 62% of respondents were aware of HCV prior to their diagnosis, 33% were unaware of what the infection was. Of the 55% who knew how they were infected, 47% reported current or previous injection drug use.
Thirty-nine percent of the respondents received an HCV diagnosis due to a health care provider recognizing related symptoms. Other respondents received a diagnosis after routine medical exams (31%) or after they donated blood (14%). Fatigue was the most common symptom among both respondents who were cured (79%) and not cured (85%). Fatigue (70%), depression (69%) and anxiety (63%) affected respondents’ daily lives the most.
Barriers to treatment
Most of the respondents not cured said they actively seek out information on the latest treatments and play an active role in treatment decisions for their HCV. However, 52% of the uncured respondents have yet to receive treatment and 33% received treatment in the past but are no longer on treatment.
“Upon diagnosis, one of the top concerns that respondents had was how they were going to afford treatment in addition to how it would affect their body,” Hayes said. “There is a large percentage who reported they’re not sure what their next step is, and they don’t really have any plans. Anecdotally, based on what we see in the community, there are a lot of people who have a bit of hopelessness and feel they may never be able to access a life-saving cure for them.”
Respondents who have not yet received treatment said they are worried they cannot afford treatment (53%), their insurance provider denied coverage for HCV treatment (25%), they have not decided with their doctor what course to take (19%), or they are worried about the potential side effects of treatment (19%).
Of those who received HCV treatment, either cured or not cured, 28% stopped treatment early. The reason for 40% of those who stopped early was drug-related side effects. Overall, 148 respondents reported they had received treatment but were not cured.
“When treatment fails, there’s both an emotional and physical toll that it takes on people,” Hayes said. “It can be really brutal to go through a whole treatment regimen and really get your hopes up and then hear that you haven’t cleared the virus. There are some open-ended responses and one respondent wrote that when the virus came back after treatment, ‘I had never been so depressed in my life.’”
Education and awareness
Among 52% of the respondents who said they had never used manufacturer-sponsored financial support programs, 37% were unaware that those programs existed for HCV.
Most of the uncured respondents (69%) were interested in HCV clinical trials as means to benefit themselves (67%) and benefit others (60%), because it may be the only way they can receive treatment (55%), or because it may be the only way they can afford treatment (47%).
Educational topics that most interested respondents included complications related to HCV, long-term outcomes, related symptoms, new HCV treatments, and managing the infection.
Resources respondents turned to most often included health care professionals (62%), HCV-specific websites (56%), internet searches (46%), general health websites (28%), and social media outlets (26%).
Respondents also listed community as an important resource, as most of those cured (93%) said they still feel like they are part of the HCV community and 30% continue to engage in community activities such as support groups, liver walks, and work with the American Liver Foundation.
According to Hayes, while recent awareness efforts have been successful, she was concerned that a focus on risk factors, such as injection drug use, could affect outreach. “It’s important for both the general public and health care professionals to be aware that a risk factor someone had for a very short amount of time 30 years ago could influence what’s going on in their health today.
“It’s really an emotional battle that many are going through because there is still so much stigma that surrounds hepatitis C,” Hayes concluded. “If we could see people for who they really are, beyond just the condition or what the label represents to you, it’s important to really see people for what their struggle is and not necessarily what the condition represents.” – by Talitha Bennett
Reference: Health Union. Hepatitis C in America 2017 Findings. July 2017. Accessed October 11, 2017.
Disclosure: Hayes reports no relevant financial disclosures.