• Research and Resources for Collaboration

  • Network with Adult Sickle Cell Providers

  • Patient Care Resources

  • Education on Clinical Management and Research Opportunities

The Sickle Cell Adult Provider Network (SCAPN)

The Sickle Cell Adult Provider Network (SCAPN) was established in 2002 with a mission to establish and support an interactive network for healthcare providers and investigators who serve adults with sickle cell disease.  This was the first, and remains the only, national organization that offers a home for healthcare professionals from multiple disciplines who focus on adult-oriented research, clinical care, provider education/training, mentorship and advocacy in sickle cell disease.


CMS Report on Sickle cell disease and Opioids  

The Invisible Crisis: Understanding Pain Management in Medicare Beneficiaries with Sickle Cell Disease
Cara V. James, Ph.D. and Shondelle Wilson-Frederick, Ph.D. CMS Office of Minority Health

Conclusion: This study highlights variability in opioid prescribing among Medicare beneficiaries with SCD.  For the majority of patients with SCD, opioid analgesics were an important treatment option, and a subset utilized doses of greater than 120 MME to manage SCD-related pain. The complex nature of SCD pain management may be exacerbated by ongoing efforts to address the opioid epidemic. Excluding sickle cell patients from efforts to restrict opioid access, similar to exclusions for cancer, hospice patients, and other patients with complex pain syndromes, could help ensure that sickle cell patients have access to appropriate care that improve patient health outcomes. As new pain management options are identified, the needs of patients living with SCD should be considered. 

To see the full report; CMS Opioid Brief:  https://www.cms.gov/About-CMS/Agency-Information/OMH/research-and-data/information-products/data-highlights/Understanding-Pain-Management-in-Medicare-Beneficiaries-with-Sickle-Cell-Disease-.html




Rare Disease Week on Capitol Hill 2019

Rare Disease Week on Capitol Hill in Washington D.C. from February 24 to February 28, 2019.

A Hotel block has been reserved at the Washington Court Hotel.  To make a reservation in the EveryLife

Foundation hotel room block, please go to the hotel website. 









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  • Welcome to SCAPN.net

    We are excited to launch our new website!  A big thank you to the Doris Duke Foundation.  We are now a 501(c)3 organization that facilitates Research, Networking and Resources for Health Care Providers of Sickle Cell Adults!  We welcome you to visit the site and become interactive with us.

    • Feedback on the web site
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    • Donations
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    • Blog

    Click here to become a member and stay informed of all the upcoming news and events.   SCAPN is a 501(c)3 and all donations are tax deductible.