Fourteen focus groups were conducted, 6 in NYC and 8 in San Francisco. The 6 in NYC included one with Latino/a participants and one with African American participants at each of the three recruitment settings (MMT, SEP, and HIV clinic) with a total of 51 participants. The 8 in San Francisco included 2 with African American and 1 with Latino in MMT; 2 Latino and 1 African American at HIV primary care; and 1 African American and 1 Latino at SEP, with a total of 44 participants. The total sample of 95 participants was 41% female (n=39); average age was 45 years (minimum 32, maximum 58). The analysis discusses results related to access to HCV testing, post-test counseling and medical care, experience with HCV treatment and perceptions of HCV treatment. No differences between testing experiences emerged by gender or between focus groups in NYC and San Francisco hence, results are reported in aggregate.
In focus groups, nearly all participants reported having been tested for HCV. Participants generally described an HCV testing experience that consisted of testing at the structured settings in which they were receiving care, with tests commonly having been initiated by health care providers with knowledge of participants’ risk factors for HCV. The primary settings in which participants were tested for HCV were MMTs and SEPs. Common to those who were or had been in MMT was a perception that routine HCV testing was a mandatory component of the intake exam and annual physicals for all MMT patients: “You’re on methadone, it’s a requirement anyway, to get tested for [HCV]” (African American male); no one reported objecting to being tested for HCV in this way. This perceived routinization of HCV testing was also reported by participants who underwent testing at health care sites where tests were usually initiated by health care providers and where the reason for the appointment was to receive care for other illnesses: “I did [HCV] testing when getting [treatment for] pneumonia” (Latino). Such testing often took place without participants being aware that they were tested for HCV: “I found out afterwards [that I was tested for HCV]. [The doctor] tested it on his own”. (Latino).
While testing for HCV was common among focus group participants, most reported being unaware of voluntary testing sites. Most participants were eager to have access to voluntary HCV testing. Focus group participants did not report seeking self-initiated HCV testing outside of MMT, SEP, jail and HIV primary care settings: “Most people just don’t know where to do it [HCV test], unless you go to the exchange and they happen to be doing it there” (African American male); “You have to find a way to get it [HCV test]; It ain’t like-come and get a hep C test. It’s like a best-kept secret” (African American male).
Underscoring the reality that HCV is a widely asymptomatic disease, only one participant reported seeking medical attention because they experienced symptoms associated with an HCV infection: “I had yellow jaundice. Like my urine was orange, real dark orange […] At least the doctor told me [I was HCV positive]” (African American female).
These patterns of HCV testing experiences contrasted with participant reports regarding HIV testing, which were characterized by frequent and self-initiated testing with access to ubiquitous testing sites: “HIV testing is much more accessible to me, more accessible than hepatitis C” (African American female). Participants had a high degree of awareness of available HIV testing sites: “The fact that they’re so accessible, I feel like if any day I feel like getting up and going to get [an HIV] test, I can get it the very same day” (Latina). Many participants reported self-initiated HIV testing every three to six months.
Experiences with HCV post-test counseling and referrals
Despite their individual histories of drug use, many participants were surprised when they were first diagnosed with HCV: “My doctor took blood, and he tested it and he told me I had hepatitis C, and that was my first time knowing about it […] I was an injector”. (African American male)
Many participants found to be HCV positive reported receiving their results but coming away from post-test counseling without a clear understanding of the significance of the diagnosis or what next steps to take: “I found out I was hep C positive. [The doctor] told me the basics but they never really told me what the next step was”. (Latino) Participants reported confusion and uncertainty given their new situation: They had been given a diagnosis of HCV, but did not come away with a clear understanding of the health implications or what to do next:
You’re hep C positive, but now what? they should have a place to send them or I should have somebody some place at my facility to at least counsel them. Nobody has even spoken to them. (African American male)
They won’t refer you to nobody, see they just told me and just left me hanging. Just left me there. (African American female)
They didn’t give me nothing to go on. I had nothing to take home with me and sit down and study and go over myself… they don’t have nothing for the poor person that has contracted hep C. Nobody where I got tested at gave me any literature. (African American female)
Accompanying the feelings of uncertainty regarding an HCV diagnosis, many participants described feeling fatalistic with a generalized nihilism about managing their infection: “I don’t know what to do. Except just walk around dying from it” (African American male).
Participants specifically described a lack of explanation and clarity regarding the treatment options for HCV and they were eager for more information and a better understanding of HCV treatment: “When I first found out I had hepatitis C, they didn't suggest any kind of treatment. It was only two or three years later that they made me an appointment for the hospital to go” (Latina).
As part of this uncertainty about treatment, many people came away with an implicit message that there was not much else that could or needed to be done to treat HCV or to prevent liver damage. As one participant explained: “Everybody says there’s really nothing too much to do when you got that [HCV]. They just say, yeah, I got it, as far as hep C, and they [health care providers] just let you know” (African American male). Participants also reported disengaging from care once they found out they weren’t eligible for treatment or that treatment wasn’t necessary for them at that point in time.
So he told me that if you want, take a biopsy if you want it, that was my option. So I didn't do it. He said, but your liver seems like it's okay. The numbers are in a good-good place […] So I dropped it at that. (Latino)
Some participants, despite having been told they were HCV positive, did not believe they were infected because their providers did not offer them treatment: “I don't believe them [the doctors] for the simple fact they didn't give me, they didn't give me no medicine for it [HCV]”; “I’m sure he will if I have hep C, he will tell me take this and this medication. He will order it. So I do not believe I have hep C” (African American male).
Experiences with HCV treatment evaluations
Among participants who reported receiving HCV treatment evaluations, many said that they were told by health care providers that due to the healthy state of their liver and the results of various tests to assess their infection, treatment was not recommended at that time. Some understood that treatment was not offered because there was no evidence of liver damage. Many participants reported not initiating HCV treatment because their providers either did not discuss or recommend it: “My doctor told the same thing that everything was fine, not to worry about it [HCV] […] that the numbers were low and that I didn't need no medication or anything” (Latina); “[My doctor told me] I didn’t need a treatment because it wasn’t bad […] My liver wasn’t inflamed, and I was doing okay […] there was no need for medication until years down the line” (African American male).
While some people came away from HCV evaluations understanding that treatment was indicated if there was substantial liver damage and may not be otherwise necessary, many participants did not have a thorough understanding and felt as if they were left in limbo with a positive diagnosis without clear options. Participants who were evaluated but not offered treatment commonly reported being counseled about reducing drug and alcohol use and avoiding excess acetaminophen, “[the doctor] told me that […] just don't drink any alcohol and don't abuse them, stuff that's going to irritate the liver”. (Latino)
There were few participants who reported being encouraged to have regular medical follow-up to monitor their HCV infection but without recommendation for treatment.
I went according to my doctor. He said that my viral load was okay, so I took—I took it like that, okay, so then I'm fine. Every month, you go see that doctor […] on a monthly basis and stay—stay with blood work. (Latino)
Few participants in the focus groups had initiated HCV treatment; however, of those who reported initiating treatment, they all discontinued treatment due to adverse drug reactions.
I decided to treat it [HCV] […] I only did it for like four months because I ended up getting some side effects […] The medication was doing things that I dislike […] I told [my doctor] that I am not taking it anymore. (Latino)
For the participants who reported being offered treatment, many reported that the low odds of eradicating the virus deterred them from initiating treatment. Additionally, one participant reported that their provider did not recommend treatment saying the patient was infected with an HCV genotype that was poorly responsive to treatment.
Perceptions of HCV treatment
Knowledge and perceptions about HCV treatment often came from peers, and the messages communicated were often discouraging of treatment. While a few patients had previously initiated HCV treatment, most had no direct treatment experience. Participants reported that these communications with peers raised anxiety about the potential adverse side effects of the medication: “I didn’t even know what the process was […] I found out through someone who had hep C, and her experience through it” (Latino).
Participants with HCV were uniformly eager to learn more about HCV treatment and how to stay healthy. Among participants who reported discussing treatment with a health care provider, or who were offered treatment, the majority felt dissuaded from pursuing it. While some participants reported an interest in treatment, the consideration of “everything that goes with it”, including not wanting to endure the serious side effects of treatment, was the primary reason that participants chose not to initiate treatment. Among HCV-positive individuals in particular, there was a common perception that HCV treatment was worse than the disease due to the difficulty in coping with the length of treatment and medication side effects: “[There are] bad reactions that a lot of people have with medication. Some people get suicidal, depression […] They’d get lonely, you know, depressed, big, big stay of depression” (Latino).
Many participants while willing and even eager to consider HCV treatment, many articulated that these fears of lengthy treatment and severe adverse effects- discouraged them from pursuing treatment. Additionally, participants reported believing that treatment might be harmful to their liver, might cause HCV infection or other harmful physical adverse effects, and be inefficacious: “Interferon I’ve heard is the treatment for it but I’ve heard that the treatment is worse than the disease and it’s not effective”. (Latino) Such concerns lead many infected but asymptomatic participants to not seek treatment; as one participant explained it: “if it ain’t broke, don’t fix it” (African American male). This attitude was common; participants reported believing that it was more advantageous to their health to not seek treatment rather than pursue treatment and risk making their health worse: “my liver function is still good, so I’m not going [to] take something that’s going [to] make me worse” (Latino).
In contrast, across focus groups, participants’ overall knowledge about HIV and treatment options was extensive, regardless of their HIV status. Participants understood opportunistic infections; various tests indicating HIV/AIDS status; treatment outcomes; and the necessity of treatment to control the infection “If you’re told you got HIV […] it’s not like before, like it’s more manageable, you can live longer […] there’s so many drugs that can help with it”. (Latina)
In addition to their individual concerns about HCV, participants also regarded HCV as a virus infecting and affecting drug users rather than non-drug users. They concluded that the paucity of HCV services and the lack of effective treatment options were the result of stigma and marginalization of IDUs. In addition, participants described their belief that socioeconomic factors and insurance availability influenced their doctors’ decision making regarding the provision of HCV treatment.
If you have private insurance […] They’ll give you all the treatment and health that you want…but because they know that Medicaid is not going to pay them their money on time- they’re going to get paid […] they’re not ready and willing to offer this treatment [to those with Medicaid]. (Latino)
I think a lot has to do with – people who – the powers that be don’t use drugs like we use drugs. It [HCV] don’t affect them. (African American male)
One participant explained that she felt mistreated by her doctor: “They kick you to the side”. (African American female)
Mistrust of health care providers’ motivations manifested in other ways. Some participants reported believing that their providers were diagnosing, and even misdiagnosing HCV to receive insurance payments for their visits.
Implications of drug use
One of the barriers participants reported complicating engagement in HCV care was active drug use. Participants reported that when they were using actively they were less likely to get tested for HCV, “Personally, I wouldn’t put down no syringe […] to go get tested [for HCV]” (Latino); “It took me so long [to get tested] because I was getting high”. (Latino) One participant explained that her commencing HCV care occurred “fast as my addiction would let me go”. (African American female) Active drug use not only emerged as a barrier to participants’ willingness to engage in HCV testing, but also as a barrier to clinical follow-up after receiving a HCV diagnosis. Participants reported that the consuming nature of drug use precluded any motivation to seek care. One participant attributed his active heroin use to his inability to schedule an appointment for an HCV evaluation from a referral he received after being tested for HCV:
Yes, [the doctor] told me … numerous times. I just didn’t do it. Either I forgot about it or was just too lazy to get up off my ass and go do it. I got a thing about keeping appointments […] it’s the dope’s fault. (African American male)