The Intersection of Access: Part I
05/15/2018
From Clinic to Court; From Real-World to Research
In fall 2017, on the seventh floor of Scott Hall, students in the Legal Clinics sought to improve access to a life-saving medical cure through litigation, while students in a Food & Drug Law Seminar did original research to formulate new solutions to other access issues.
A Triumphant Culmination
On an otherwise unremarkable morning two days before Thanksgiving, a small crowd gathered in Scott Hall鈥檚 first-floor conference room for a press conference.
Despite the lack of fanfare, the news was big. John Ammann ('84), the McDonnell Professor of Justice in American Society, took to the podium.
Following litigation brought by SLU LAW鈥檚 Legal Clinics, Legal Services of Eastern Missouri and the National Health Law Program, he announced, the Missouri Department of Social Services was changing its Medicaid policy to allow all state residents living with hepatitis C access to the cure, effective immediately.
Missouri鈥檚 Medicaid program, MO HealthNet, had until that point only covered the cure (direct-acting antivirals) for patients in the most advanced stages of the disease, with extensive liver damage. It had not covered the necessary medications for patients in earlier stages, despite their risk of impending liver disease or cancer, and despite the public health risk of spreading the disease to other residents. Notably, major private insurers along with Medicare and the Veterans Administration provided this coverage for anyone with hepatitis C, so it was just the state鈥檚 poorest residents who lacked access to the treatment.
The change affects approximately 13,000 Missourians.
In a unique collaboration, the legal team worked in partnership with Bruce Bacon, M.D., co-director of the Saint Louis University Liver Center in the Division of Hepatology in the School of Medicine, who was also present at the press conference. Bacon is a nationally known expert who works with and advocates for patients who have hepatitis C, and he facilitated his patients鈥 serving as plaintiffs in the suit.
鈥淚t became readily apparent that it was cost-effective to treat patients before they got really sick and eradicate the virus, not wait until they got really sick and then treat them,鈥 Bacon said. 鈥淭hese cures are dramatic in terms of the improvement of quality of life that patients have. Additionally, the public health improvements from eradicating this virus are tremendous. We feel very confident that we can get to a point where we will be able to literally cure everybody and eliminate this virus from infecting and affecting any patients in the U.S. at all.鈥
According to the Centers for Disease Control and Prevention (CDC), hepatitis C kills more people in the U.S. than every other infectious disease combined.
And while the disease has primarily affected baby boomers, new reported infections nearly tripled between 2010 and 2015, as a result of the nation鈥檚 worsening opioid epidemic, with the highest rates among young people, primarily 20- to 29-year-olds, who inject drugs. The official numbers went from 850 new infections in 2010 to 2,436 new infections in 2015, though the CDC estimates the true number is much higher 鈥 about 34,000 new infections in 2015 鈥 since there are few symptoms and most individuals do not get diagnosed.
鈥淭his is definitely the most significant policy change that I鈥檝e been a part of,鈥 said Jamie Rodriguez (鈥10), director of the Public Benefits Program at Legal Services.
Building the Coalition
Rodriguez, in fact, was not just a part of the effort, but its catalyst. In December 2015, she found herself in a small discussion group at a National Health Law Program conference learning about various states鈥 Medicaid programs鈥 hepatitis C policies.
鈥淚 started researching Missouri鈥檚 policies to see how they were in line with national trends. I thought this would be worth looking into, and we started researching from there,鈥 she said.
Rodriguez and Legal Services鈥 director of advocacy Joel Ferber met with Bruce Burkett, executive director of the HepC Alliance, and heard from him and local behavioral counselors that Bacon was the person to see. That was the point at which Ammann was brought in, who thought it was a good case and attended the first meeting with Bacon in the summer of 2016.
鈥淲e started by doing Sunshine Act requests, so with that we had two full boxes of documents that [the state] sent us, and it helped show that their policy really was that because of the expense they weren鈥檛 going to provide the medications,鈥 Ammann said. 鈥淒r. Bacon and his staff referred patients to us who needed the medication. One of the primary roles our students took was to meet with the clients, sometimes in their homes, sometimes at Steak 鈥榥 Shake, sometimes in the office, to get their stories, and we developed affidavits.鈥
鈥淚t was important to find clients who were not only good candidates for the case,
but also were interested in being part of the process,鈥 said Katie Landfried (鈥17),
now an associate at Capes Sokol, who worked on the case as a clinic student. 鈥淟itigation
can be intimidating for a lot of people, and most do not want to get involved if they
can avoid it.鈥
鈥淚 was able to meet with one of our first patients,鈥 said fellow student Kelly Smallmon (鈥17), now a document review attorney for Epiq Global. 鈥淲e traveled to her home and were able to meet her family. When we first arrived she was visibly anxious about meeting with us. It was completely obvious this particular patient was constantly in fear of infecting her family and loved ones.鈥
鈥淚 felt a great deal of sympathy for our clients based on the health issues and struggles they faced related to those symptoms,鈥 Landfried said. 鈥淲hat was most compelling, however, was the frustration of their situation with the state. To know that the state required these individuals to get sicker before they would provide this cure 鈥 essentially requiring these individuals to needlessly suffer 鈥 was an issue that motivated us all.鈥
Rodriguez agreed about the mutual mission.
鈥淚 often work with doctors, but it鈥檚 usually in a different context: more commonly I need to get medical records in order to prove eligibility for disability,鈥 she said. 鈥淚 usually struggle with doctors because there are a lot of barriers in place for me to talk to them; they don鈥檛 always realize we鈥檙e on the same team. In this case it was very clear that we were all on the same team.鈥
The team also included Washington University physician Jaquelyn Fleckenstein, M.D.; Kansas City CARE Clinic physician Blair A. Thedinger, M.D.; and Jane Perkins and Abbi Coursolle of the National Health Law Program.
鈥淚t was a great collaboration,鈥 Ammann said. 鈥淒r. Bacon respected the students as fellow professionals and understood that their goals and his were the same: his patients were our clients. For a guy who鈥檚 a national expert on this issue, he was very down to earth with our students and very collegial.鈥
From Clinic to Court to Career
If one thing is universally agreed upon by students in the Legal Clinics, it鈥檚 that the experience they gain through these types of cases is invaluable.
Landfried said the complexities and technicalities of the hep C case prepared her for similarly complex work in the toxic tort field at Capes Sokol.
鈥淭here were a lot of nuances with the case that we didn鈥檛 see in our everyday cases in the clinic,鈥 she said. 鈥淚 was also able to shake off a lot of the nerves of being a practicing attorney by all of the opportunities I was offered in the clinic. I had argued in federal court, taken a deposition, and conducted a trial in state court all before I was even an 鈥榦fficial attorney.鈥欌
For Smallmon, seeing her effort come to fruition was powerful.
鈥淚 felt personally compelled to help with this case because my stepmom had just received a life-saving liver transplant a few weeks prior to [me] being presented with this opportunity,鈥 she said. 鈥淪o it really hit home.鈥
And the impact of this case will be felt beyond the 鈥渉ome鈥 of Missouri, as now more than half the states have eliminated these types of restrictions in their Medicaid policies.
鈥淓verybody celebrates a victory in any state because it helps the momentum, so our case helped others,鈥 Ammann said. 鈥淧eople were thrilled, because now other states get to say, 鈥榃ell, Missouri鈥檚 doing it,鈥 so other states will follow along.鈥
鈥 By Maria Tsikalas