In February 2018, the sickle cell community celebrated with the announcement of two legislative victories in Congress. First, the U.S. House of Representatives passed H.R. 2410 on February 26, 2018, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act. Then it was introduced on May 11, 2017, by Rep. Danny Davis (D-IL). Then, on February 28, 2018, Senator Cory Booker (D-NJ) and Senator Tim Scott (R-SC) introduced S.2465, the Senate companion bill to H.R. 2410 into the Senate.

About HR 2410

Above all, H.R. 2410 would authorize the Secretary of Health and Human Services to conduct surveillance and collect data on the prevalence of sickle cell disease (SCD). In addition, the bill would authorize the Secretary to develop public health initiatives that support community-based organizations in education activities and to support regional and state health departments in testing to identify SCD.

Most importantly, click here to read the key points of the legislation.

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Key Talking Points about S.2465

• S.2465 – Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018- was introduced on February 28, 2018 by Sen Tim Scott [R-SC] and cosponsored by Sen. Booker, Cory A. [D-NJ]; Sen. Jones, Doug [D-AL]; Sen. Cassidy, Bill [R-LA]; Sen. Stabenow, Debbie [D-MI]; and Sen. Warren, Elizabeth [D-MA]
• S.2465 represents a commitment by the government to continue much-needed research geared towards increasing understanding of prevalence, distribution, outcomes, and therapies associated with SCD
  • The legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA)
  • Authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, academic institutions, and non-profit organizations
• It is imperative that the Senate HELP committee take action to move the bill towards a floor vote with the ultimate goal of cohesive passage by both Congressional houses and signature by the President into law

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CONTACT YOUR SENATORS & LET YOUR VOICE BE HEARD

So, this is a major victory for the sickle cell community, and it has been a long journey to get to this momentous occasion. But, we still have work to do to ensure the Senate passes the companion bill. If we do not advocate for this bill, how can we expect others to do so?

Click here to find your senator. 

• Begin by finding out who they are by plugging in your zip code.
• Their email addresses are provided and you can copy and paste the letter below and fill in the blanks, or write your own personal letter.
• Email your letters, including your name and address.

In conclusion, adding a personal touch to your letter is always meaningful.

 Sample Letter & Call Script

Dear Senator ____________:

 As someone closely touched by sickle cell disease (SCD), I write to ask your support for the S.2465, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018, that was introduced into the Senate on February 28^th by Senator Cory Booker and Senator Tim Scott.

 In the United States, approximately 100,000 people have sickle cell disease, and 2 million people have sickle cell trait. Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. In the body of people with the disease, sickle cells destroy rapidly. This causes anemia, jaundice, and the formation of gallstones. The sickle cells also block the flow of blood through vessels. This results in lung tissue damage (acute chest syndrome), pain episodes (arms, legs, chest and abdomen), stroke and priapism (painful prolonged erection). In addition, it also causes damage to most organs including the spleen, kidneys and liver. Damage to the spleen makes sickle cell disease patients, especially young children, easily overwhelmed by certain bacterial infection. No universal cure for sickle cell disease currently exists.

The Sickle Cell Disease Association of America, Inc. has worked tirelessly on the Treatment Act. As the leading advocacy organization working on a national level to resolve issues surrounding SCD and sickle cell trait, SCDAA led a grassroots, community-driven effort over the past five years on the Sickle Cell Treatment Re-Authorization Act. So, SCDAA also worked to help form and serve as host organization for the Congressional Sickle Cell Caucus, and SCDAA testified in front of the U.S. House of Representatives Health Subcommittee in 2016 about the enhanced services that would be provided to the sickle cell community through the bill.

 I am writing to ask you to support the work that has been done by the sickle cell community by supporting S.2465. The many complications of SCD can make every stage of life extremely challenging for individuals with the disease. This is compounded by the fact that many individuals living with SCD are unable to access quality care. And they are not aware of effective treatment options. In conclusion, this bill provides hope in improving outcomes for individuals with sickle cell disease (SCD).

 Sincerely