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senate Bill S. 2465

Should the Feds Extend Funding for Sickle Cell Disease Research?

Argument in favor

Sickle Cell Disease affects over 100,000 Americans, negatively impacting their own and their families’ wellness. The disease isn’t well understood, and needs further research to help find better diagnosis and treatment options.

Jack's Opinion
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12/11/2018
Yes we must explore all available resources for a new way to live, a better chance of life, if indeed we can save lives then by all means research!
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Carl's Opinion
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12/11/2018
Continue funding. This disease is very painful and debilitating. Funding for all diseases under research should continue if measurable progress is met, until the largest goal is met.
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David 's Opinion
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12/11/2018
Reauthorizing the research now will help further understanding of this disease, improve treatment, and save money in the long-term.
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Argument opposed

At only 100,000 patients in the U.S., Sickle Cell Disease doesn’t affect a significant portion of the U.S. population and is largely nonfatal, as long as it’s properly managed. Federal health research spending should be focused on other diseases that affect more people and have worse prognoses.

Jim's Opinion
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12/11/2018
No more fed spending! If individuals think the cause is worthwhile, give to an appropriate charity. We need to cut federal spending, not find worthy new ways to spend more. Congress is a nothing more that a government sanctioned Ponzi scheme!
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Brian's Opinion
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12/12/2018
At only 100,000 patients in the U.S., Sickle Cell Disease doesn’t affect a significant portion of the U.S. population and is largely nonfatal, as long as it’s properly managed. Federal health research spending should be focused on other diseases that affect more people and have worse prognoses.
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Tim's Opinion
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12/11/2018
If there’s extra money lying around one day then go for it, but until there’s extra money we should prioritize what we have towards more pressing concerns. Like... nearly any other disease out there.
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bill Progress


  • Not enacted
    The President has not signed this bill
  • The house Passed December 11th, 2018
    Passed by Voice Vote
  • The senate Passed October 11th, 2018
    Passed by Voice Vote
      senate Committees
      Committee on Health, Education, Labor, and Pensions
    IntroducedFebruary 28th, 2018

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What is Senate Bill S. 2465?

This bill would continue the federal government’s research towards increasing understanding of the prevalence, distribution, outcomes, and therapies associated with Sickle Cell Disease (SCD).  It’d also authorize sickle cell surveillance, prevention, and treatment initiatives and to establish conditions for collaboration with community-based organizations on such initiatives. The Health Resources and Service Administration’s (HRSA) grants for SCD prevention and treatment would be reauthorized, as would the Centers for Disease Control and Prevention (CDC) SCD surveillance grants for states, academic institutions, and non-profit organizations.

Under this bill, HHS could issue grants to no more than 20 eligible entities (defined as states, state health or public health departments, and higher education institutions) for the purposes of:

  • Collecting data on the demographics and prevalence of sickle cell disease;

  • Conducting public health initiatives with respect to the disease; and

  • Identifying and evaluating strategies for SCD prevention and treatment

This bill would also reauthorizes the SDTDP through 2022 with $18 million, which includes expanding support services for adolescents making the transition to adult care.

Impact

Sickle cell disease; HRSA; CDC; HHS; community-based health organizations; and SDTDP.

Cost of Senate Bill S. 2465

$123.00 Million
The CBO estimates that implementing this bill would cost around $123 million over the 2019-2023 period.

More Information

In-DepthSen. Tim Scott (R-SC) introduced this bill to fund SCD research:

"One of the pillars I base my public service on is giving a voice to the voiceless, and that is exactly what my Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act does. I am thrilled that the Senate unanimously passed my bill to ensure that we work to improve our medical understanding of this disease through enhanced data collection and public health initiatives. For far too long has this inherited disease been overshadowed in the public sphere and I am encouraged that, by the passage of it, our world-renowned medical communities will one day find a way to better treat and cure the 100,000 people across our nation who are affected."

Dr. Yutaka Niihara, CEO and founder of Emmaus Life Sciences, supports this bill:

“As a physician who has treated SCD patients for more than twenty years, I know first-hand the impact of this disease. This condition exacts a terrible toll on patients, their families and the community in terms of pain, missing school or work and hospitalizations. We are pleased to see this legislation and look forward to it being passed.”

This bill passed the Senate with an amendment by voice vote and has the support of six cosponsors, including five Democrats and one Republican. It has the support of Sick Cells, the Sickle Cell Disease Association of America, Emmaus Life Sciences, and EveryLife Foundation.

This is a companion bill to HR 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act introduced on May 11, 2017 by Rep. Danny Davis (D-IL). That bill passed the House in February 2018. Since the Senate version of this bill differs from the one that was passed by the House, a second House vote is required.


Of NoteSCD is an inherited, lifelong disorder affecting nearly 100,000 Americans. Individuals with the disease produce abnormal hemoglobin, resulting in their red blood cells becoming rigid and sickle-shaped, causing them to get stuck in blood vessels and block blood and oxygen flow to the body. SCD complications include severe pain, stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, and in some cases, premature death. Though new approaches to managing SCD have led to improvements in diagnosis and supportive care, many people living with the disease are unable to access quality care and are limited by a lack of effective treatment options.

People with SCD require regular health maintenance through proper nutrition, good hygiene, bed rest, protection against infections, and avoidance of other stresses. Regular physician or clinic visits are needed to identify early changes in the patient’s health and ensure that they receive immediate treatment if needed — all of which require public health funding.


Media:

Summary by Lorelei Yang

(Photo Credit: iStockphoto.com / Meletios Verras)

AKA

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018

Official Title

A bill to amend the Public Health Service Act to reauthorize a sickle cell disease prevention and treatment demonstration program and to provide for sickle cell disease research, surveillance, prevention, and treatment.

    No discussion needed! Vote yes!
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    Continue funding. This disease is very painful and debilitating. Funding for all diseases under research should continue if measurable progress is met, until the largest goal is met.
    Like (2)
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    Legit.
    Like (2)
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    Yes we must explore all available resources for a new way to live, a better chance of life, if indeed we can save lives then by all means research!
    Like (2)
    Follow
    Share
    No more fed spending! If individuals think the cause is worthwhile, give to an appropriate charity. We need to cut federal spending, not find worthy new ways to spend more. Congress is a nothing more that a government sanctioned Ponzi scheme!
    Like (1)
    Follow
    Share
    At only 100,000 patients in the U.S., Sickle Cell Disease doesn’t affect a significant portion of the U.S. population and is largely nonfatal, as long as it’s properly managed. Federal health research spending should be focused on other diseases that affect more people and have worse prognoses.
    Like (1)
    Follow
    Share
    Reauthorizing the research now will help further understanding of this disease, improve treatment, and save money in the long-term.
    Like (1)
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    I agree with the research aspect of this bill, but community outreach? How is community outreach going to help find a cure???
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    Sickle Cell is still a major issue affecting the lives of many.
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    Though 100,000 Americans evenly divided is "only" 2,000 per state, black citizens comprise 12.6% of the total U.S. population (a significant voting block), From a scientific point of view research in this area may lead to cures for many and varied diseases. From a moral vantage point funding this research is a no-brainer!
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    For the better meant of the human experience.
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    Why not research has helped millions of people to live a normal life
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    If there’s extra money lying around one day then go for it, but until there’s extra money we should prioritize what we have towards more pressing concerns. Like... nearly any other disease out there.
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    Any disease should have research funding how else would you find a cure for the disease .
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    We should be increasing all science research (and arts funding) and decreasing all gratuitous military expenditures.
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    If the president wants to end one disease research, then we might as well end them all. We are broke!! Fix our budget first, then we can think about making America great again.
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    Sickle Cell Disease affects over 100,000 Americans, negatively impacting their own and their families’ wellness. The disease isn’t well understood, and needs further research to help find better diagnosis and treatment options.
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