Greater efforts by healthcare providers to build trusting
relationships with people with HIV and hepatitis C, together with a greater
focus on overcoming concerns about treatment side effects, are likely to be
needed to encourage people reluctant to start treatment to begin taking hepatitis C
medication, according to the findings of a US interview study.
Reluctance to begin direct-acting antiviral treatment for
hepatitis C is a major barrier to elimination of hepatitis C as a health
problem. Current and former drug users, people who are homeless and people with
HIV who have low CD4 counts are less likely to have started hepatitis C
treatment, but more information is needed about why people delay hepatitis C treatment
and how they might be persuaded to start treatment.
The US study, published in AIDS and Behavior, looked
at barriers to beginning hepatitis C treatment among African American and Latin
people living with HIV in the US state of Connecticut in 2020 and 2021. It
formed part of a larger programme in the state to promote hepatitis C treatment
among people with HIV and hepatitis C.
Study participants were recruited from clinics providing HIV
care and services for people who use drugs in the state. People with HIV were
eligible to join the study if they had delayed hepatitis C treatment for more
than a year after diagnosis and had either completed treatment in the past
year, were currently undergoing treatment or had not started treatment.
The study recruited 21 people (12 treated in the past year,
nine untreated) for interviews in which interviewers explored a set of themes
without a structured script. Interviews took place by phone.
Study participants had a mean age of 59 years, ten were
Black, five Puerto Rican, five White and one Native American. Fifteen had a
history of injecting drug use and all had a history of substance use disorder. All
but one was taking antiretroviral therapy. The median time since HIV diagnosis
was 25 years and 15 years since hepatitis C diagnosis.
Interviewers identified several key themes in participants’
accounts of why they had chosen to delay hepatitis C treatment.
Treatment literacy
Participants often cited a lack of symptoms as a reason why they
didn’t need treatment. They also saw peers living apparently healthy lives
without treatment and concluded that they did not need it.
A fear of side effects was a common reason for avoiding
treatment; participants believed that side effects could be severe and that
side effects were an inevitable consequence of any medication. One interviewee
said:
“I’m real funny about medication, there’s some things I
won’t take. Because of the side effects and I think you’re trying to kill me.”
Concerns about the need to abstain from alcohol or substance
use during treatment were common. Some participants delayed treatment because
they believed they would be required to abstain during treatment and did not
feel able to do so, while others feared that using alcohol or drugs alongside
direct-acting antivirals would make the side effects worse or diminish the
effectiveness of treatment.
Complex stressors
Some participants had other health problems or life issues
they felt needed to be dealt with before committing to hepatitis C treatment.
Some had concerns about taking extra medication; others felt that they needed
to deal with housing or diet issues to establish a secure grounding before
starting treatment, as they expected it to be debilitating.
Peer influences
Peer perceptions of the side effects of interferon-based
treatment also affected willingness to consider treatment. Peers often
reinforced doubts about the possibility of taking direct-acting antiviral
treatment while using drugs or alcohol.
On the other hand, some who had been treated recently said
that the example of peers completing treatment had persuaded them to start
treatment. One said:
"My friend told me that I should go do it because it ain’t
that hard of a treatment."
Weak and transitory healthcare provider relationships
A lack of continuity in healthcare providers or multiple
providers had proved a barrier for some participants.
"Every month I used to come to that clinic, every month was a
different doctor."
For others, a lack of trust in their healthcare provider as
a result of their experiences with HIV treatment affected their willingness to
discuss or consider treatment. Messages about the need to avoid drugs or
alcohol from providers also reinforced negative attitudes towards treatment.
Stable and supportive healthcare provider relationships
Three-quarters of those who initiated treatment did so after
establishing a supportive relationship with a healthcare provider who took the
time to get to know them as a person and built trust. Supportive providers
invested time in explaining hepatitis C and the available treatment and allowed
participants to make a decision at their own pace. Some participants were
reassured that they could stop treatment if any side effects occurred, and this
gave them confidence to start.
Recommendations
The study investigators recommend that healthcare providers
can promote the uptake of hepatitis C treatment by:
- Providing detailed information about side
effects to address concerns.
- Taking a full history of previous medication
side effects to address the roots of patient distrust.
- Addressing perceptions that alcohol, drugs and
hepatitis C treatment do not mix by having frank conversations about substance
use, drug interactions, adherence and the risks of reinfection.
- Building on peer relationships with people who
have already completed hepatitis C treatment to promote the uptake of
treatment, for example through speaker events, support groups and one-to-one
engagement.