Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
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Friday, October 12 • 3:30pm - 3:45pm
Finding SCD Patients In Michigan - A Case Study

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Ms. Jeanne M. Loboda- Global Blood Therapeutics, Dr. Kartik S. Pappu- Global Blood Therapeutics, Ms. Robin C. Howard- Global Blood Therapeutics, Mr. Vincent Y. Siu- Global Blood Therapeutics, Ms. Wanda Whitten-Shurney- Sickle Cell Disease Association of America–Michigan Chapter

Objective: Sickle cell disease (SCD) is a genetic, lifelong blood disorder that can cause significant, long-term, severely disabling, and costly clinical complications. Many individuals with SCD, especially adults, lack access to hematologists with significant experience treating SCD. Many providers in the primary care setting have limited knowledge of SCD and available therapies. Provider and patient disease education is a vital component of quality care delivery in this setting.
We describe the results of a recent collaboration between the Michigan Chapter of the Sickle Cell Disease Association of America (SCDAA-MI) and Global Blood Therapeutics, a biotechnology company dedicated to developing novel disease-modifying therapies for SCD, to better target community providers and patients for educational outreach programs in the state of Michigan. A special focus was placed on federally qualified healthcare centers (FQHCs) near areas with moderate to high densities of affected individuals.
The ability to target outreach efforts is particularly relevant to the SCDAA-MI’s role as the subrecipient of 2 health resource and service administration (HRSA) grants. One of the major objectives of the Sickle Cell Treatment Demonstration Grant is to educate physicians about the management of SCD. The Newborn Screening Grant is focused on identifying patients previously lost to follow-up, placing them in a medical home, and providing care coordination.
Methods: Pharmacy and medical claims for patients with at least 2 SCD specific health care claims (using SCD specific ICD9/10 codes) from Symphony Health’s Integrated Dataverse™ were analyzed. This longitudinal patient dataset captures claims across the United States and covers all payment types, including Medicaid, Medicare, commercial plans, cash, and assistance programs. All data collected from the database is deidentified in compliance with the patient confidentiality requirement of the Health Insurance Portability and Accountability Act.
We first identified individuals residing in the state of Michigan with at least 1 ICD9/10 code for SCD in each of the 2 most recent years (2016 and 2017). We then analyzed each individual’s age (derived from birth year), geographic location (using the first 3 digits of the zip code of residence [zip3]), and healthcare payer (derived from payment type). Visits to a hematologist during 2016 and 2017 were quantified through the National Provider Identifier number associated with each claim. Finally, we overlaid the locations of the latest list of FQHCs in Michigan on an SCD population density map to identify the FQHCs with the largest local SCD populations.
Results: A total of 1628 individuals were identified in Michigan with at least 1 SCD-related claim in both 2016 and 2017. Of these, 83% were older than age 18 years, and 60% had Medicaid as their primary payer (of those that do have payer information provided). The distribution of these individuals with SCD was geographically concentrated: 69% resided in 3 zip3 areas (Figure 1). A majority of pediatric patients (64%) and of adult patients (71%) had not seen a hematologist at least once a year in 2016 and 2017. We identified 52 FQHCs that serviced the 3 zip codes with the largest share of individuals affected by SCD.
 Conclusions: Individuals with SCD in Michigan are geographically concentrated. Most individuals with SCD in Michigan have Medicaid as their primary medical insurance provider. Although it is likely that some patient visits are not captured in this dataset, this analysis nevertheless demonstrates that most individuals with SCD in Michigan have reduced access to hematologists. Therefore, it is crucial to identify and provide disease education to community providers that service the Medicaid population and have the potential to treat significant volumes of individuals with SCD. To this end, we have identified several FQHCs that might serve as recipients of initial outreach by the SCDAA-MI. This establishes a case study for biotechnology and pharmaceutical companies to work in concert with local advocacy organizations to better focus outreach efforts on improving disease education and care delivery. Making similar data available to other HRSA grantees as well as other community-based organizations could prove to be of great benefit in targeting efforts to maximize all aspects of care.


Jeanne Loboda

Senior Director, Global Blood Therapeutics
Accomplished healthcare marketer and strategist with oncology and rare disease experience. Proven builder of brand and product launch teams. Skilled leader recognized for developing functional and team visions and translating them into achievements. Keen ability to identify unmet... Read More →
avatar for Wanda Whitten-Shurney, MD

Wanda Whitten-Shurney, MD

Pediatrician, Sickle Cell Disease Associtaion, Michigan Chapter Inc.
Dr. Shurney is a pediatrician at Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan where she has provided out – patient care for children who have sickle cell disease for the past 19 years.  Her interest in sickle cell disease is “genetic”.  She inherited... Read More →

Friday October 12, 2018 3:30pm - 3:45pm EDT
Baltimore/ Annapolis