Why do people with HIV delay hepatitis C treatment?

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 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 than others, 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 Latino 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.

Glossary

antiviral

A drug that acts against a virus or viruses.

direct-acting antiviral (DAA)

Modern drugs for the treatment of hepatitis C, which work directly against the hepatitis C virus. They stop the virus from reproducing by blocking certain steps in its lifecycle.

anal intraepithelial neoplasia (AIN)

An abnormal growth on the surface of the rectum or anal canal which, when observed with a microscope, suggests that the cells could be malignant (cancerous).

reinfection

In HIV, synonym for superinfection. In hepatitis C, used when someone who has been cured of the virus is infected with hepatitis C again.

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. 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, with an even split between women and men. 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 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 health care 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 from providers about the need to avoid drugs or alcohol 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 health care 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.

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