Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
Friday, October 12 • 3:45pm - 4:00pm
Availability of Information on Blood and Marrow Transplantation (BMT) Coverage Benefits for Patients with Sickle Cell Disease (SCD) Enrolled in Medicaid

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Dr. Tatenda Mupfudze- National Marrow Donor Program, Ms. Lensa Idossa, MPH -National Marrow Donor Program, Dr. Lih-Wen Mau - PhD, MPH, National Marrow Donor Program, Ms. Aisha Mehmud, MPH - National Marrow Donor Program, Ms. Jaime Preussler, MS -National Marrow Donor Program, Ms. Rachel Glissmann, MPH- National Marrow Donor Program, Ms. Alicia Silver, MPP –National Marrow Donor Program, Ms. Susan Leppke, MPH -National Marrow Donor Program, Dr. Linda Burns, MD - National Marrow Donor Program, Ms. Ellen Denzen, MS -National Marrow Donor Program

Sickle cell disease (SCD) is the most common inherited hemoglobin disorder affecting approximately 100,000 people in the United States (U.S.) [1]. The Centers for Disease Control and Prevention (CDC) report SCD incidence rates of 1:365 and 1:16,300 for Black/African Americans and Hispanics in the United States (U.S.), respectively [2]. Nearly 2,000 new diagnoses are reported each year via newborn screening [2]. Painful crises are the hallmark of SCD, coupled with an unpredictable clinical course that can lead to organ dysfunction, poor quality of life and premature death [3-4].    
Allogeneic blood and marrow transplantation (BMT) is a complex and resource-intense therapy that uses donor cells from either a closely matched family member, unrelated donor, or cord blood to restore the patient’s bone marrow, giving rise to healthy red blood cells [3-4]. It is the only potentially curative treatment option for SCD with a 5-year disease-free survival rate of 92% in children [3-4].  
The timing of when a patient with SCD should undergo BMT is evolving based on data from clinical trials. Currently, experts recommend that children with severe SCD, including overt strokes, recurrent acute chest syndrome (ACS), or recurrent vaso-occlusive crisis despite adherence to hydroxyurea therapy and/or regular blood transfusion therapy, be referred for BMT consultation [3-4]. Some experts recommend earlier referral due to the progressive nature of the disease.  
Lack of appropriate insurance coverage can be a significant barrier to accessing advanced therapies such as BMT. Many patients with SCD are covered by Medicaid, a federal program administered at the state level [5]. BMT is an optional benefit under Medicaid, which leads to significant variation in Medicaid policy over time and between states, further exacerbating disparities in access [5]. There is a dearth of information on the impact of: 1) Medicaid coverage and 2) easy-to-access policy information for patients with SCD.   
To describe the availability of information on Medicaid coverage benefits for BMT for patients with SCD  
 SCD incidence estimates were calculated using the number of births in 2016 [6-7] multiplied by the CDC SCD incidence rates by race [2].  States estimated to have more than 75 newborns diagnosed with SCD were identified and information on Medicaid BMT coverage benefits was collected. Where available, information was obtained from Medicaid plan websites for the calendar year 2018. When information was not available online, state Medicaid offices were contacted. Lastly, if contact with the state office could not be made, transplant centers within that state were contacted for information. Data on the number of BMTs performed annually for patients with SCD was extracted from the Center for International Blood and Marrow Transplant (CIBMTR) outcomes registry for 2016 and 2017 (there is 1-year lag in data submission to the CIBMTR by transplant centers, hence 2016-2017 data was included in this analysis).  
Six states were estimated to have more than 75 newborns diagnosed with SCD in 2016 (Table 1). Although Medicaid programs determine BMT coverage for SCD by reviewing individual patient characteristics and clinical indications, general requirements differed by state. Information on BMT coverage for patients with SCD was publicly available only on the Texas, North Carolina and Californian plan websites [8-11]. The absence of information on plan websites necessitated contacting state Medicaid offices. Contact with Medicaid office representatives revealed that BMT may be covered with prior approval in California. A Georgia Medicaid representative reported that although BMT may be covered for patients with SCD under 21, after obtaining prior approval, BMT was not covered for patients with SCD over 21 years. Data collection for New York and Florida is currently ongoing. Data collection through state Medicaid offices and transplant centers on comprehensive benefits including BMT-related travel, housing, and medications is also currently ongoing and will be completed by September 2018 [8].    
There is disparate information available online regarding Medicaid coverage of BMT for patients with SCD across states with high numbers of SCD patients. Limited publicly available information on BMT coverage for patients with SCD may contribute to disparities in access. Coverage for resources beyond the procedure itself needed to undergo BMT, such as travel, housing, and medications, may also affect patient access to BMT (data collection is ongoing). Although Medicaid programs may grant prior approval for BMT on a case-by-case basis, making general requirements/guidelines on patient and clinical indications that would be considered for BMT and covered by Medicaid publicly available would better support patient-provider informed treatment decision-making. Provision of easy-to-access information on current Medicaid coverage for BMT in SCD is needed to address informational barriers and help reduce disparities in access. Expanded awareness of available Medicaid coverage benefits may also increase engagement among health professionals and the SCD community around a potentially lifesaving therapy.   
  1. National Heart Lung and Blood Institute. Evidence-Based Management of Sickle Cell Disease Expert Panel Report 2014.  
  2. Centers for Disease Control and Prevention (CDC). Data & Statistics. https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed Feb, 2018.  
  3.  Kassim AA, Sharma D. Hematopoietic stem cell transplantation for sickle cell disease: The changing landscape. Hematol Oncol Stem Cell Ther. 2017.  
  4. Walters MC, De Castro LM, Sullivan KM, et al. Indications and Results of HLA-Identical Sibling Hematopoietic Cell Transplantation for Sickle Cell Disease. Biol Blood Marrow Transplant. 2016;22:207-211  
  5. Medicaid.gov. Medicaid & CHIP Enrollment Data Highlights. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html, Accessed Apr, 2018.  
  6. Kaiser Family Foundation. Number of Biths by Race, https://www.kff.org/other/state-indicator/births-by-raceethnicity/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Black%22,%22sort%22:%22desc%22%7D. Accessed Apr, 2018  
  7. The Centers for Disease Control and Prevention (CDC), National Vital Statistics Reports (NVSR), Vol. 67, No. 1: Births: Final Data for 2016. Accessed Jan 2018.  
  8. Be the Match. Transplant Benefits & Coverage. https://payer.bethematchclinical.org/transplant-benefits-and-coverage/. Accessed Apr, 2018.  
  9. Florida Medicaid. Transplant Services Coverage Policy Agency for Health Care Administration. http://www.fdhc.state.fl.us/medicaid/review/Specific/59G-4.360_Transplant_Coverage_Policy.pdf. Accessed Feb 2018  
  10. Texas Medicaid Provider Procedure Manual December 2015 Volume 1 & 2.  http://www.tmhp.com/TMHP_File_Library/Provider_Manuals/TMPPM/2015/Dec_2015%20TMPPM.pdf. Accessed Jun 2018  
  11. NC Division of Medical Assistance. Medicaid and Health Choice Allogeneic Hematopoietic & Bone Clinical Co


Tatenda Mupfudze, PhD

Health Services Research Analyst II, Center for International Blood and Marrow Transplant Research (CIBMTR)
Tatenda Mupfudze is a Health Services Research Analyst at the National Marrow Donor Program. Her area of research interests center on anemia of inflammation, hepcidin, sickle cell anemia and blood and marrow transplantation.

Friday October 12, 2018 3:45pm - 4:00pm
Constellation D

Attendees (13)