Health & Social Services

IHRC began to offer hepatitis C (HCV) rapid screening at our outreach sites in 2017. We quickly noticed that for many of the individuals in our program who received a positive rapid screen and later an official diagnosis with an active HCV infection (following a positive confirmatory test), a paper referral to treatment did not get the desired results. Simply put, the clients we referred to primary care providers to begin treatment did not always make their way to these providers. For the ones who did engage in treatment, they encountered a complicated process with many insurance barriers, many required visits, many different providers, and a need for time, transportation, and finances, as well as stigma, judgement, or shame related to their history of IV drug use. In Iowa, less than 5% of individuals diagnosed with an active hepatitis C infection receive the curative medications each year. We set out to improve this – we wanted to make sure that more people who are diagnosed with HCV are able to receive the cure. Especially those individuals who are at high risk for transmitting the virus to other community members, particularly through IV drug use. Providing access to HCV treatment isn’t just about stopping the spread of a virus. Because HCV is the leading infectious disease killer in the U.S. (killing more people annually than the next 60 leading infectious diseases combined), treatment is about preventing future cases of liver disease, liver cancer, liver failure, and ultimately liver transplantation. All of these coming at a cost: the health, wellbeing, and happiness of individuals and the coffers of our state’s health care system (in particular, the Medicaid program).

In September 2018, IHRC established a patient navigation program in Cedar Rapids and Iowa City to help patients to address these barriers. The goal of the patient navigation program? To work with every individual client to address their unique goals and challenges and do whatever it takes to ensure that clients are able to receive treatment for HCV, if they want it. With funding from the Prevent Cancer Foundation, and later the City of Iowa City Racial Justice & Social Equity grant, the Iowa Department of Public Health (via a grant from ASTHO), Telligen, and NASTAD (via a grant from CDC), we established a patient navigation program that pairs individuals living with HCV with a case manager. The case manager provides rapid screening, confirmatory testing, and schedules appointments directly with a gastroenterologist-hepatologist. The case manager works to ensure that lab work can easily be completed in advance of appointments, and provides transportation to and accompanies clients to their physician visits if requested. The case manager is able to assist clients with understanding the treatment process and the natural course and epidemiology of hepatitis C, as well as help patients to feel confident in a health care setting where they may have previously experienced stigma or trauma as a result of shame and judgement that are connected to their history of injection drug use. Once clients attend an initial provider visit, the case manager works to maintain contact with them in order to ensure continued engagement in care over the period of time necessary to obtain approval for access to the curative medication. For a patient population that often is denied treatment by IA Medicaid due to sobriety and fibrosis requirements, staying in touch over the long-term is key: this patient population is often only able to access treatment through a free drug program, which can only be accessed following Medicaid denial. This process is timely, and means that patients need to be in touch. For a group of patients that often lack consistent access to cell phones or housing, this can be especially difficult.

In the first one year of the pilot program in Eastern Iowa, we administered 400 rapid screens to individuals who actively injected drugs or had a history of intravenous drug use. Of those individuals, 20.75% (83 individuals) had reactive screens. 15.66% (13) were determined to have cleared the virus on confirmatory testing. This meant that 84.34% (70 individuals) were identified as having an active hepatitis C infection. Of this number, 10% (7) died or were incarcerated during the pilot period (5 died due to an overdose and 2 were incarcerated).

Of the 63 individuals engaged in the treatment process, 14.2% had been cured at the end of the pilot program period (9 achieved SVR and were cured of active HCV infection). 55% of these individuals (35) were engaged in the treatment process and were awaiting approval to receive medication, currently taking the medication, or had finished the medication and were awaiting confirmation of having achieved SVR. 30% (19) were lost to follow-up or they chose not to continue with treatment. These 19 individuals were primarily individuals experiencing homelessness who did not have cell phones and moved out of the shelter where they had been staying, or decided not to continue engaging in treatment at the present moment due to other existing life priorities. With continued grant support for this program, we plan to continue offering testing services and working with individuals currently receiving care.