Kansas DURB Covers Gene Therapies for Sickle Cell Disease

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This month, Sick Cells sat down with Kevin Wake to hear about the first Drug Utilization Review Board (DURB) meeting in Kansas to review the newly approved gene therapies, Casgevy (Vertex) and Lyfgenia (bluebird bio) for the treatment of Sickle Cell Disease. The meeting took place on January 17th, 2024.

Kevin Wake is the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest, a CBO in Kansas City, KS. He is also Chairman of University Health’s Patient and Family Advisory Council, is involved with advocacy through the Rare Disease Legislative Advocates and has worked on several committees, including the National Health Council’s Value Initiative Work Group and ASH’s Learning Community Design Workgroup. Kevin has been a committed Sick Cells Ambassador.


Sick Cells: Hi Kevin, how are you today? 

Kevin: I’m doing well. I am just getting my blood exchange, so I’m just here. 

SC: Are you okay to chat? Do you have a port-a-cath, or are you getting the transfusion with the catheter in your artery? 

Kevin: I have a port, so I’m okay to talk. 

SC: Great! From your perspective, Kevin, how was the DURB meeting in Kansas? 

Kevin: Overall, the meeting was positive. I was pleased with the outcome. They voted to cover both gene therapies for sickle cell, with the requirement of a Prior Authorization (PA) process.  Currently, these therapies will be approved for patients with the specific genotype of hemoglobin SS, are limited to the ages of the patients in the clinical studies (12-35 years old for Casgevy and 12-50 years old for Lyfgenia), and patients have to meet the minimum requirements of sickle cell disease crisis that requires treatment. 

SC: That is really positive to hear. Did the DURB say anything about how they made this decision? 

Kevin: Yes. They talked about how once more data is available, they will re-evaluate the treatments. There will also be a Pharmacy & Therapeutics (P&T) committee meeting to evaluate exactly where the treatment is on the formulary later this year. It was pretty cool to be present at the nation’s first DURB that discusses these therapies. 

Also, during that DURB, the board discussed other treatments from diabetes, anti-obesity medications and other disease states. It was pretty clear that the KS DURB made a decisions last year and used the time this year to re-evaluate and update their decisions. It made me hopeful for coverage of the SCD treatments. 

SC: You went in person? Did they have a virtual option too? 

Kevin: I traveled to Topeka, but they had virtual callers too. One of the companies reached out to me to let me know about the meeting. Both companies were there and testified. I submitted a written letter to Medicaid prior to the meeting.  Vertex gave data about who would be eligible for the gene therapies in KS and how many might actually seek the therapy in the first 3 years on KS Medicaid. According to their data, of the 35 total patients in KS only about 5 patients would actually be eligible for the treatment. Bluebird said since Vertex did a great job covering the statistics about SCD, they would yield their time back. They each had 2 minutes to testify, and the DURB even set a buzzer to go off. 

SC: It’s nice to see the companies working together. Were they happy with the outcome? 

Kevin: I believe both companies were hoping for the PA to reflect the actual FDA approval language; however, the state said they wanted more data on other genotypes. 

SC: I can see why the state said that. The trial has more participants with SS than SC and other genotypes. The FDA hosted a stakeholder call in December. They made a point to note that gene therapies are intensive treatments, so to undergo this treatment, it needs to be pretty severe. 

We’re glad you were able to attend. Any other reflections you’d like to share? 

Kevin: Honestly, I was nervous on my drive to Topeka. I thought, “Kansas is such a conservative state, we’re doomed.” I’m shocked that they approved coverage without a debate. We made the first hurdle that they approved in Kansas. I came out feeling positive about that. 

SC: Kevin, I would have to agree. We are making great strides in SCD. It’s a relief to know that the government is finally working for sickle cell disease. They’re doing their jobs. Thank you for attending that meeting and sharing your story with us.


Published Jan 2024

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