The state of Louisiana takes on hepatitis C
"We've got an opportunity here. We've got the technology; we've got the motivation.”
Hepatitis C awareness poster via the Louisiana Department of Health
Meta Smith Davis is a mother, grandmother and great-grandmother. An outspoken advocate and public speaker on issues of social justice and community health, Davis works as a program manager for Open Health Care Clinics in Baton Rouge, Louisiana.
“If we want people to be healthy, we have to offer them every opportunity to do so,” Davis said from her Louisiana office.
Davis was diagnosed with hepatitis C, caused by a virus that attacks the liver, in the 2000s.
“Hepatitis C is the deadliest infectious disease in the U.S.,”* said Dr. Alex Billioux, Assistant Secretary of Health for the Louisiana Department of Health. “It kills more people than the next 60 reportable infections combined.”
Most patients have no symptoms. That means the disease can be challenging to diagnose and treat. But treatment, through antiviral medications, does work in 98 percent of patients—including Davis.
“I got on the medication for hepatitis C,” Davis said. “I took it for 12 weeks. Hepatitis C was gone. It’s something I want everyone to know about.”
Though highly effective in so many patients, the treatment historically had prohibitively high costs. Dr. Billioux estimates that more than 50,000 Louisianans have hepatitis C. In 2017, less than 400 patients were treated.
In 2019, Louisiana became the first state to pioneer a subscription-based pricing model for unlimited hepatitis C treatment. In the five-year program, Louisiana established an agreement with a hepatitis C medication manufacturer guaranteeing unlimited access to the cure while capping the state’s costs for these medications. That means the state will be able to treat as many patients as possible, versus paying a per-patient treatment, which is both costly and limiting.
The state wants to reach those patients quickly because of the disease’s infectiousness.
“A lot of people don’t even know they’re living with hepatitis C,” Davis said. “How would you know there’s a cure, if you don’t think it applies to you?”
To ensure that awareness and diagnosis happen at earlier, more easily treatable stages, the state is enacting a new solution in two phases. The first is the IBM Community Health Platform.
Hepatitis C is a symptom of broader societal issues and inequalities, so the solution also strives to create economic and educational opportunities for Louisiana residents.
“Innovation requires risk. It requires boldness,” said Paul Woods, IBM Client Executive. “How can we come together and help re-imagine Louisiana as a healthier, safer and smarter state?”
The IBM Community Health platform
The IBM Community Health platform comprises two mobile applications, one for members (patients or individuals at risk for hepatitis C) and the second for coaches—community health workers like Davis who are trained to support members on their journey to cure.
The member app is hybrid cloud ready. It’s built on the IBM Cloud, leverages Red Hat OpenShift, and is being developed as Open Source software that all IBMers can contribute to.
According to Woods, the solution can be scaled and replicated in other projects and applied to various use cases anywhere in the U.S. The code base can be configured through the backend, and features can be added—even remotely—to improve the user experience.
As the solution rolls out, the IBM team is working to stay fully connected to the community.
“We need the community’s partnership and trust,” Eric Kane, IBM project team lead, told Industrious from Baton Rouge.
The technology is just one piece of the puzzle. The most important focus is the people, both the patients and the community health workers working to reach them.
Community health workers are trusted patient advocates because they’re part of the community they serve. Often, they’re former patients—which gives them crucial empathy and insights.
“There are a lot of challenges for the folks who live here,” Davis said.
She’s one of dozens of coaches working with the state of Louisiana and IBM. Together, they’ve gathered input from field studies, as well as formal and informal community meetings with residents, researchers, community leaders, healthcare providers, government agencies and public officials.
“How can we engage a population that may be hard to reach?” Kane said. “They might have extreme blockers to get to care—whether income to afford a bus pass or the ability to take time off work, or doctor’s offices without childcare.”
The IBM team runs design thinking workshops to get that type of user input and iterative feedback, and make sure it’s part of the ultimate solution. Fostering relationships at all levels is a crucial component of the work.
“One day we’re in a federally qualified health center, meeting with hepatitis C patients, some of whom are homeless or suffering from challenging conditions,” Kane said. “Another day we’re with community health workers who are deeply passionate about their work.”
The team also met with state officials and university researchers, creating an ecosystem focused on an end-to-end solution for improving population health.
“We’ve got an opportunity here,” said Woods. “The right people and the right place at the right time. We’ve got the technology; we’ve got the motivation. It’s a special time to be in Louisiana.”
App functionality: the journey to cure
The member app feed features a personalized content stream, based on where the member is in their journey to cure. A new member may see content related to the benefits of having a coach, quick tips on managing symptoms, or words of encouragement from a community member.
At the core of the experience, the My Care page guides members step-by-step, from unknown hepatitis C status to cure. As members achieve health milestones, such as getting a coach or being tested, they earn badges and points that can be redeemed for rewards. Patients can set up treatment reminders, plus earn points for logging treatment. The app offers an interactive resource map with testing locations, mobile care buses, pharmacies, syringe services, and more.
The app is completely anonymous. Members are not required to enter any personal details.
Importantly, patients can work towards being a coach.
Members have access to education on a variety of topics related to overall well-being. The app offers a reward and incentive structure, and the potential for earning income gets to the root challenge that many patients face.
Into a hepatitis C-free future
Woods and Dr. Billioux are especially excited about the possibility of scaling this work.
“This allows us to prepare for the future of scale,” Woods said. “We talked about potentially opioids, maybe HIV, syphilis, childhood diabetes and obesity.”
For Dr. Billioux, Louisiana could potentially become a model for other states facing similar population health issues.
“This moonshot opportunity allows us to build the technologies we need to become one of the most innovative states in the country for healthcare and health,” he said.
For Davis, there’s too much work to do to stop.
“People are counting on us not to quit on them,” she said. “I’m not going to quit.”
*This quote is from an interview conducted prior to the first confirmed COVID-19 related death in the United States.