Reps Davis, Lee and Sewell lead letter to Speaker Pelosi and Minority Leader McCarthy Calling for Improved Access to Comprehensive Outpatient Care for Individuals with Sickle Cell Disease
Representatives Danny K. Davis, Barbara Lee and Terri Sewell lead letter to Speaker Pelosi and Minority Leader McCarthy calling for the Centers for Medicare and Medicaid Services (CMS) to quickly develop a program for Medicare/Medicaid and Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with sickle cell disease.
The letter is below and HERE.
May 1, 2020
The Honorable Nancy Pelosi Speaker of the House of Representatives U.S. Capitol Building, H-222 Washington, DC 20515 | The Honorable Kevin McCarthy Minority Leader U.S. Capitol Building, H-204 Washington, DC 20515 |
Dear Speaker Pelosi and Minority Leader McCarthy:
The undersigned Members of Congress are gravely concerned about the impact COVID-19 is having on African Americans and Latinos in the US and particularly, on individuals living with sickle cell disease (SCD), who often live with long term heart and lung problems (multiple severe co-morbidities) and are at higher risk of life threatening complications if infected. As you consider legislative proposals for the next COVID-19 stimulus package, we ask that you include an authorization for the Centers for Medicare and Medicaid Services (CMS) to quickly develop a program for Medicare/Medicaid and Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD.
Sickle cell disease is an inherited blood disorder that affects an estimated 100,000 Americans, primarily African Americans and Hispanics. SCD causes blockages in blood and oxygen flow throughout the body resulting in stroke, acute chest syndrome, severe organ damage and pain. On average people with SCD live 30 years less than average Americans. The suppressed immune system and co-existing medical conditions occurring in SCD patients result in a much higher risk of severe complications stemming from infection with COVID-19. In addition to their medical vulnerability due to SCD, many of these individuals already face high health risk factors by living in densely populated urban communities with a high risk of poverty and challenges with housing, obtaining food and job security. In addition, some individuals with SCD or their family members are working essential jobs during the pandemic, which are putting them at an increased exposure to the infection.
Today, too many patients living with SCD are not under the care of specialists or primary care physicians that understand the disease and have the tools to effectively treat those affected. Preventive care includes patient education including a discussion about new therapies, referrals to appropriate subspecialists, lab tests, radiographic studies, and vaccines, which are critically needed to prevent infection, strokes and to manage severe pain, in addition to needed treatment for COVID-related illness. Although it has become increasingly difficult to manage some patients in their homes, the expansion of telehealth services during the pandemic has been helpful and should be extended. Many of our patients are suffering at home in excruciating pain because of fear of going to the hospital due to possible exposure to the virus.
An organized approach to primary and preventive care for SCD patients is desperately needed to improve the health and quality of life for this population, which we believe will have the added benefit of reducing costs to both the Medicare and Medicaid programs by reducing emergency department and inpatient hospital utilization. We are suggesting authorization language for $30 million that is modeled on a demonstration program included in the recently passed legislation to address the opioid crisis (PL 115 – 271, SUPPORT for Patients and Community Act). Under the model program, the focus will be on providing specialized and primary care in appropriate outpatient settings. With the recent publication of clinical practice guidelines in sickle cell disease and approvals of new treatments for SCD and more in the pipeline, there is no better time than now to improve this patient populations’ access to state-of-the-art care.
We ask for your leadership on this issue by including in the next stimulus bill an authorization for CMS to develop a demo program to improve outpatient services under Medicare and Medicaid to this vulnerable population. During this time of crisis, it is critical to initiate this program.
Thank you for your consideration.
Sincerely,
__________________ __________________ __________________
Danny K. Davis Barbara Lee Terri Sewell
Member of Congress Member of Congress Member of Congress
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G. K. Butterfield Steve Cohen Shelia Jackson-Lee
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Alcee L. Hastings Darren Soto John Larson
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Bennie G. Thompson Bobby Rush Andre Carson
Member of Congress Member of Congress Member of Congress
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Jahana Hayes Josh Harder Bill Foster
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Eleanor Holmes Norton Mike Sherill Marcia L. Fudge
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Ted Deutch Eddie Bernice Johnson Bonnie Watson Coleman
Member of Congress Member of Congress Member of Congress
_________________ __________________ __________________
Alma S. Adams Dwight Evans Joyce Beatty
Member of Congress Member of Congress Member of Congress
_________________ __________________ __________________
Jim McGovern Donald M. Payne, Jr. Jesús G. “Chuy” Garcia
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Sanford D. Bishop, Jr. Lisa Blunt Rochester Thomas R. Suozzi
Member of Congress Member of Congress Member of Congress
__________________ __________________ __________________
Yvette D, Clarke Al Green Rashida Tlaib
Member of Congress Member of Congress Member of Congress
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Gregory W. Meeks Henry C. “Hank” Johnson, Jr.
Member of Congress Member of Congress