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Karen King found out that she’d contracted hepatitis C about a year after a boyfriend died of a fentanyl overdose. A shared needle was the cause, she said, although she had tried to sterilize it.
Medicaid would have covered her treatment, but “I wasn’t interested, because I was still in my addiction…I didn’t want to waste anybody’s time,” she said. “I guess I didn’t care enough about myself at the time.”
Eventually, she checked into rehab, becoming clean in November of 2017. Treatment followed the next year. And within months, she discovered Westside Family Healthcare, a community health center with several locations in Delaware.
“Because I was homeless [at the time], I would go each week to their Northeast office,” King explained. There, she would receive both primary care and treatment for her hepatitis C virus (HCV). The medication was “so expensive, I didn’t want the whole supply” in case something happened to it.
Over the past several years, treatment options for HCV have grown better and better, becoming more straightforward and more effective, with fewer side effects. As that’s happened, it’s become more common to receive treatment in a community care setting like the one King found at Westside.
Westside Family Healthcare received a $200,000 grant from Direct Relief and the Pfizer Foundation to expand their HCV screening, testing, and treatment. It’s part of Direct Relief’s Innovation Awards in Community Health: Addressing Infectious Disease in Underserved Communities.
That grant has allowed Westside to hire a specialized patient navigator and a new nurse case manager for HCV patients, and to scale up their outreach process.
A community care setting
For a patient without significant liver damage or other complicating factors, an eight-to-twelve-week course of treatment is the norm. “These medications are really well tolerated,” said Dr. Karla Testa, a physician at Westside. “It’s a really big change from where the hepatitis C landscape was 20 years ago.”
At Westside, a patient’s primary care, HCV treatment, case management, and any additional support can all be handled by one organization.
Any patient between the ages of 18 to 79 is automatically screened for the disease. That’s in line with current health recommendations, but “we were actually a little bit ahead of the game and we were doing it already,” Testa said.
The idea behind the near-universal testing procedures was to reduce the stigma – especially as the nation’s opioid crisis led to a corresponding increase in HCV. “We looked at our patient population and knew that we definitely see patients who have increased risk, but many patients still may not accept testing,” Testa explained.
For patient Marie Reed, the screening process turned out to be instrumental. She learned that she had HCV, which she believes she contracted from a tattoo in college. She’s still in treatment. “The service I have received from them has been absolutely exquisite,” she said.
Education and support
Westside’s patients face many barriers to care, including transportation limitations, lack of insurance, and substance use disorders, so making sure that patients are treated and supported is essential to their model of care. That often means going beyond medical care and helping patients find food and housing, or even distributing bus passes.
When a test comes back positive, Carlos Leon, a dedicated HCV patient navigator, reaches out to engage the person. He explains what their result means, and helps them along the path of insurance coverage, lab tests, and imaging.
“When I came into this role, I was really excited about it and I knew I was going to love talking to patients about guidance and support,” he said. Leon is there “from the beginning to the end, and I think it makes them feel confident.”
“Carlos has been simply wonderful,” said Reed. When she experienced side effects from her treatment, both he and the nursing staff called regularly just to see how she was feeling. “That really showed me that they cared – that I wasn’t just a number, I was a person,” she said.
If the patient is a good fit for treatment in a community care setting, Testa will prescribe a course of medication. Both she and Leon will check in with patients regularly to ensure they’re doing well, and remaining engaged in their care. “Adherence to that medication is so important to receiving a cure,” Testa explained.
Currently, Westside has cured 18 patients and has about a dozen more in treatment, but “it’s going to rise quite a bit,” Testa said. “This grant allows us to expand this program.”
Many patients, like King, may not prioritize their treatment for HCV right away. One patient, who had recently resolved to go into rehab, wanted to wait until he was clean before beginning a regimen. Now the patient is sober, and, Leon said, “We’ve kind of been celebrating.”
Another, whose mother had had a bad experience receiving treatment years before, was fearful of having a similar experience. Testa worked to help her understand how treatment options had progressed since then. That patient is now nearly done with her course.
But for Leon and Testa, education and support are a major part of the role. Not only does Westside treat HCV, but “we get to support these patients who don’t get support elsewhere,” Leon said.
Taking good care
For King, that means frequent contact with Testa, with whom she feels a bond. “I don’t have a therapist right now, and Dr. Testa will call me to talk to me, because I am struggling right now” for reasons related to the pandemic, she said.
When King was dealing with addiction, she said, Testa’s concern for her felt palpable. “You could tell it bothered her, she was worried about me,” she said. “She’s so proud of my sobriety.”
Being able to provide HCV treatment in a community care setting is a major strength for Westside, Testa said. For many patients, they’re also a medical home. Some HCV patients also receive medication-assisted treatment for substance use disorders.
“They took good care of me, and they always do,” King said.