Title: Expressing support for the designation of September 2022 as "Sickle Cell Disease Awareness Month" in order to educate communities across the United States about sickle cell disease and the need for research, early detection methods, effective treatments, and preventative care programs with respect to complications from sickle cell disease and conditions related to sickle cell disease.
Policy area: Health

Summary:
This resolution expresses support for the goals and ideals of Sickle Cell Disease Awareness Month and encourages the President to support access to innovative therapies for the disease. Sickle cell disease is an inherited blood disorder than can lead to pain, anemia, infections, and stroke.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1330 Introduced in House (IH)]

<DOC>






117th CONGRESS
  2d Session
H. RES. 1330

 Expressing support for the designation of September 2022 as ``Sickle 
 Cell Disease Awareness Month'' in order to educate communities across 
the United States about sickle cell disease and the need for research, 
 early detection methods, effective treatments, and preventative care 
  programs with respect to complications from sickle cell disease and 
               conditions related to sickle cell disease.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           September 2, 2022

 Mr. Danny K. Davis of Illinois (for himself, Mr. Burgess, Ms. Lee of 
 California, and Mr. Owens) submitted the following resolution; which 
          was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
 Expressing support for the designation of September 2022 as ``Sickle 
 Cell Disease Awareness Month'' in order to educate communities across 
the United States about sickle cell disease and the need for research, 
 early detection methods, effective treatments, and preventative care 
  programs with respect to complications from sickle cell disease and 
               conditions related to sickle cell disease.

Whereas sickle cell disease (referred to in this preamble as ``SCD'') is an 
        inherited blood disorder that is a major health problem in the United 
        States and worldwide;
Whereas SCD results from an individual having two copies of a sickle cell gene, 
        one inherited from each biological parent;
Whereas SCD results in the production of abnormally shaped red blood cells;
Whereas SCD causes episodes of considerable pain in the arms, legs, chest, and 
        abdomen of an individual, which often result in lengthy hospital stays;
Whereas SCD affects an estimated 100,000 individuals in the United States;
Whereas approximately 2,000 babies are born with SCD each year in the United 
        States, with the disease occurring in approximately 1 in 365 newborn 
        African-American infants and 1 in 16,300 newborn Hispanic-American 
        infants, and SCD can be found in individuals of Mediterranean, Middle 
        Eastern, Asian, and Indian origin;
Whereas more than 3,000,000 individuals in the United States have a single copy 
        of the sickle cell gene, referred to as sickle cell trait, and 1 in 13 
        African Americans carries the trait;
Whereas sickle cell trait is found in 100,000,000 people worldwide, and affects 
        people of African, Middle Eastern, South Asian, Hispanic, and southern 
        European Caucasian descent;
Whereas there is a 1 in 4 chance that a child born to parents who both have the 
        sickle cell trait will have the disease;
Whereas the life expectancy of an individual with SCD in the United States is 
        often severely limited to an average of 43 years for a woman and 41 
        years for a man;
Whereas, according to a 2018 study, the total economic burden on the United 
        States health care system associated with SCD was $2,980,000,000 
        annually, of which 57 percent was attributed to hospital inpatient 
        costs;
Whereas, according to a 2022 publication, the average lifetime cost for 
        individuals most severely impacted by SCD ranges between $4,200,000 to 
        $6,200,000 per patient;
Whereas, in 2020, the National Academies of Sciences, Engineering, and Medicine 
        developed a comprehensive Strategic Plan and Blueprint for Action to 
        Address Sickle Cell Disease, which cited the need for new innovative 
        therapies as well as to address barriers that may impact delivery and 
        access to approved treatments;
Whereas there are emerging genetic therapy technologies, including gene editing, 
        that can modify a patient's own hematopoietic stem cells with the goal 
        of the patient being able to generate healthy red blood cells to prevent 
        sickle cell crisis;
Whereas while hematopoietic stem cell transplantation is currently the only cure 
        for SCD and advances in treating the associated complications of SCD 
        have occurred, more research is needed to find widely available 
        treatments and cures to help individuals with SCD; and
Whereas September 2022 has been designated as Sickle Cell Disease Awareness 
        Month in order to educate communities across the United States about 
        SCD, including early detection methods, effective treatments, and 
        preventative care programs with respect to complications from SCD and 
        conditions related to SCD: Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) supports the goals and ideals of ``Sickle Cell Disease 
        Awareness Month'';
            (2) commits to ensuring equitable access among economic, 
        racial, and ethnic groups to new treatments in order to improve 
        health outcomes for those with sickle cell disease;
            (3) calls on the Department of Health and Human Services to 
        create policy solutions aimed at eliminating barriers to 
        equitable access for innovative sickle cell disease therapies, 
        including cell, gene, and gene-editing therapies, in the 
        Medicaid and Medicare system for patients who need them most;
            (4) encourages the people of the United States to hold 
        appropriate programs, events, and activities during Sickle Cell 
        Disease Awareness Month to raise public awareness of--
                    (A) sickle cell disease trait;
                    (B) preventative care programs, treatments, and 
                other patient services for those suffering from sickle 
                cell disease;
                    (C) complications from sickle cell disease; and
                    (D) conditions related to sickle cell disease;
            (5) encourages the President of the United States to form a 
        Sickle Cell Disease Interagency Cabinet, which would be 
        convened by the White House, to begin working toward policies 
        that will support equitable and appropriate access to 
        innovative sickle cell disease therapies, by bringing together 
        departments and agencies across the Federal Government to 
        address sickle cell disease on multiple fronts, including--
                    (A) the Department of Health and Human Services;
                    (B) the Department of Veterans Affairs;
                    (C) the National Institutes of Health;
                    (D) the Food and Drug Administration; and
                    (E) the Centers for Medicare & Medicaid Services; 
                and
            (6) urges that the options to be considered by the Sickle 
        Cell Disease Interagency Cabinet not only address access to 
        potential future curative treatments, but also address the bias 
        that those with sickle cell disease continue to face within the 
        United States health care system.
                                 <all>