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Linkage to care is more than giving someone a positive hepatitis C (HCV) test result and sending them on their way. It is more than a pat on the back with a few pamphlets of health information and the reassurance, "you can call if you ever have any questions," and it's certainly more than telling HCV-positive persons, "it [your liver] isn't bad enough yet, come back in a few months and we will check on it again," while not providing any social support or care.
I've heard similar experiences from many of the people living with HCV that I work with, and after each one I find myself more frustrated with the current state of HCV linkage to care services. Compared to HIV infection, HCV is lagging behind in overall treatment and health outcomes. Yes, we know how to cure HCV at rates of 95% or greater, something we can't do with HIV, but effective treatments for HCV only matter if people can complete care. In my previous essay I mentioned Vanderburgh County ranks 77 of 92 counties in Indiana for overall health outcomes. Hearing that, it may come as a surprise Vanderburgh County ranks 9 of 92 counties in Indiana for clinical care. The county has comparably great health care options, services and providers, while also having a track record of those services not being highly accessed consistently for long term health care.
County health rankings, the source of the above data, uses various metrics to compile the overall health outcomes for U.S. counties. A few of the key metrics used include: quality of life, health behaviors (this includes statistics on, alcohol, STDs, teen pregnancy and chemical overdose deaths), clinical care (there are 1,039 people for every primary care physician, which is better than the national average) and social and economic factors (this includes statistics on high school and college graduation rates, poverty and insurance). The complex method of calculating each counties overall health outcomes means that no single social determinant of health is the cause for deficits in the health of a local population. More specifically, the issues of linkage to care experienced by HCV-positive persons with substance use concerns cannot be significantly improved by only focusing on structural improvements. Such an approach would be missing the subtleties of patient frustration.
There are a few issues that seem to be arising more often. They include provider concerns of patient consumption of alcohol, and the view by some providers that HCV reinfection is likely because of past substance use. What we are finding however, is that if these provider concerns are about the efficacy of HCV medication and treatment uptake, then they are nothing more than rhetoric being used to hide stigma. Research shows alcohol does not significantly affect the success of HCV medication (e.g. Harvoni, Sovaldi, Zepateir) at curing hepatitis C, nor is HCV reinfection among substance users as high as previously thought.
A research study published in the Journal of Hepatology followed a cohort of treatment successful participants over a seven-year span from Sweden. The study showed the reinfection rate of HCV was 11%, and linked primarily with the occurrence of relapse. This means reinfection can be addressed by focusing on relapse prevention. When given adequate funding syringe exchange sites and universal access to harm reduction education increases the overall health outcomes of HCV-positive persons with substance use concerns.
The more social determinants of health a patient is affected by (low income and education, race/ethnicity, health literacy) the more challenging improving their health will be. These patients are faced with navigating more barriers than others, and are likely to be experiencing all of this with less help and higher levels of anxiety and uncertainty.
Although policy changes can improve the linkage to care services of affected populations, and their overall health outcomes, exclusively doing so will push marginalized groups further to the fringes of health care by ignoring their diversity of health care needs. HCV-positive persons with substance use concerns operate within a delicate space when accessing health care. Successfully addressing the growing HCV epidemic means being acutely aware of this.
I am worried that an often reported problem HCV-positive persons with substance use concerns experience in accessing health care is going unaddressed. Cultural sensitivity is hard to measure and improve because it is rooted not in broken policy, but in the opinions and perceptions of people. No matter how well we improve over health outcomes through policy change, until we collectively view HCV-positive persons with substance use concerns as human beings who demand respect and are eager to improve their lives and health, instead of saying through body langue and subtleties they are more work than they are worth, we will continue seeing increases in HCV incidence and poor health outcomes.
Matthew Zielske currently works as a HIV/HCV special populations prevention specialist at an HIV services organization. He utilizes a harm reduction model in his work with the substance use population focusing pointedly on persons who inject drugs. He is currently conducting research on health literacy and hepatitis C for his master's thesis in communications.
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