Title: Expressing support for the designation of September 2021 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. 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. 494 Introduced in House (IH)]

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117th CONGRESS
  1st Session
H. RES. 494

 Expressing support for the designation of September 2021 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

                             June 23, 2021

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

_______________________________________________________________________

                               RESOLUTION


 
 Expressing support for the designation of September 2021 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 causes the rapid destruction of sickle cells, which results in 
        multiple medical complications, including anemia, jaundice, gallstones, 
        strokes, restricted blood flow, damaged tissue in the liver, spleen, and 
        kidneys, and death;
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 1,000 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 the sickle 
        cell trait, and 1 in 13 African Americans carries the trait;
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 42 years for a woman and 38 
        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, 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 2021 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; 
        and
            (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.
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