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Spreading the Word About Supplemental Funding for SCD Centers

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Mid-November 2023

Ruth Jessen Hickman, MD

Ruth Jessen Hickman, MD, is a freelance medical and science writer based in Bloomington, Indiana.

Julie Kanter, MD

Julie Kanter, MD

Payal Desai, MD

Payal Desai, MD

People living with sickle cell disease (SCD) face significant medical and social challenges, including health disparities and lack of access to clinicians who have strong disease expertise. An ongoing, bidirectional relationship with an expert medical team is required for patients to receive greater psychological support, treatment coordination, and comprehensive care.

New medications are available for people with SCD, and clinical trials to evaluate potential new therapies are ongoing; however, the U.S. Food and Drug Administration is considering genetic therapies for approval this year, which has further complicated the treatments available for SCD. As a result, it has become even more important for patients to receive care at SCD centers, where clinicians experienced in current SCD guidelines can administer their treatment. Patients with SCD who are treated at such centers have improved quality of life, decreased use of acute care services, and reduced health care costs overall.

In a Special Interest Session at the 65th American Society of Hematology (ASH) Annual Meeting and Exposition titled “Looking for Money in All the ‘Right’ Places for Sickle Cell,” attendees will learn more about ways to supplement funding for SCD centers. The session will be co-chaired and moderated by Julie Kanter, MD, associate professor in the Division of Hematology and Oncology at the University of Alabama at Birmingham, and Payal Desai, MD, an associate professor in the Division of Hematology at Wake Forest University School of Medicine in Winston-Salem, North Carolina.

Why was this topic selected for the special session program this year?

Dr. Kanter: ASH has led a fantastic workshop on building sickle cell centers for the last several years. We want to highlight some of what has been learned and continue to give new and interesting information to those working to build SCD centers.

Dr. Desai: The workshops are helping build infrastructure and address access. We know there is a continued gap in access to care for patients with SCD. Part of the gap is driven by the cost of caring for patients with SCD (and poor reimbursement), but some strategies may allow more centers to support SCD care. The annual meeting allows for greater outreach on this topic to ASH members.

Why is it so important that patients receive their treatment through an SCD center if possible?

Dr. Desai: Sickle cell care is complex, and there are multiple newer therapies and approaches. Working with an SCD center not only allows for early diagnosis and intervention for complications but also allows systemic access to these therapies.

Dr. Kanter: SCD affects every organ of the body. We can significantly improve care through prevention of SCD complications; however, many primary care doctors and community oncologists are not familiar with the disease, and they are not consistently monitoring for these complications to address them.

Who should attend this session?

Dr. Kanter: Anyone interested in SCD, classical hematology, gene therapies, or the business of medicine should join. Some of the topics discussed will have implications outside of sickle cell center funding.

Who will be speaking and what perspectives will they offer?

Dr. Kanter: We have a few great speakers. I will be talking about partnering with your hospital to make use of 340B drug-pricing programs, which require pharmaceutical manufacturers to sell certain outpatient drugs at a discount to eligible health care providers, as well as about similar programs that can help improve SCD centers.

Alexis Leonard, MD, of St. Jude Children’s Research Hospital in Memphis, Tennessee, will be discussing how we can harness gene therapies to improve SCD centers. With gene therapy approval for commercial usage on the horizon, we need to think about how to set up centers to meet patients’ comprehensive needs.

Sophie Lanzkron, MD, MHS, of Johns Hopkins Institute in Baltimore, will talk about the business of infusion centers in SCD. Access to infusion centers improves admission rates, readmission rates, and the patient experience.

Can you share more information about the challenges of obtaining sufficient funding and support for patients with SCD?

Dr. Kanter: Despite the fact that it is the most commonly inherited blood disease in the U.S., SCD remains underfunded and under-resourced. We are still fighting to have enough providers and team members to be able to provide appropriate care for people with SCD. Insurance companies do not value (and reimburse) the necessary mental health care and case coordination needed for individuals with SCD. That means our centers have to find funding in other places to support the needs of patients and the SCD centers.

What do you hope attendees will take away from this session?

Dr. Kanter: We hope to continue to engage with our peers in how important it is to care for people with SCD and share opportunities to strengthen and support SCD centers.

Dr. Desai: We hope attendees will consider new ideas to support ongoing programs and find resources to help establish new SCD programs.

Anything else our readers should know?

Dr. Desai: We talk about addressing health care disparities as a system, and all of us agree that providing this care is essential to improving outcomes. But meeting this mission requires that we support team members in order to have the time to appropriately provide comprehensive care, which can be a challenge in [relative unit value]-based health care systems and takes financial support. Finding ways to fund this effort while also working with health care systems to invest in addressing disparities is key to the long-term success of SCD programs. We hope that by bringing this discussion of the need for financial support and its particular challenges to light, it will promote more robust discussion on support in SCD.

Looking for Money in All the “Right” Places for Sickle Cell

Saturday, December 9, 9:30 a.m. - 11:00 a.m., San Diego Convention Center, Hall A/B1, Ground Level


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Mid-November 2023


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