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

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May 1, 2020
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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

_________________                __________________  __________________

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

__________________              __________________  __________________

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

__________________  __________________ 

Gregory W. Meeks       Henry C. “Hank” Johnson, Jr.

Member of Congress    Member of Congress