S. 1158 would authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases.
Detailed Summary
SMA Treatment Acceleration Act of 2009 - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH) to establish a national clinical trials network for spinal muscular atrophy by upgrading and unifying spinal muscular atrophy clinical trial sites and recruiting new investigators and sites. Requires the Director to ensure that such network: (1) conducts coordinated, multisite, clinical trials of therapies and clinical approaches to the treatment of spinal muscular atrophy; and (2) rapidly and efficiently disseminates scientific findings to the field.
Requires the Director to: (1) establish a data coordinating center with respect to spinal muscular atrophy; and (2) expand and intensify NIH programs with respect to preclinical translation research related to spinal muscular atrophy.
Requires the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to enhance and support a spinal muscular atrophy patient registry to provide for expanded epidemiological research towards improving awareness, management, treatment, and prevention of spinal muscular atrophy. Requires the Secretary to ensure the collection and analysis of longitudinal data related to individuals of all ages.
Directs the Secretary to establish the Interagency Spinal Muscular Atrophy Research Coordinating Committee. Sets forth the duties of the Committee, including to develop a comprehensive strategy related to spinal muscular atrophy research and other related neurological diseases and disorders.
Requires the Secretary to establish a program to provide information and education on spinal muscular atrophy to health professionals and the general public.
Status of the Legislation
Latest Major Action: 5/21/2009: Referred to Senate committee. Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Points in Favor
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Points Against
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Visitor Comments
Victoria Strong
May 23, 2009, 1:39am (report abuse)SMA is the leading genetic killer of young children. It is degenerative and terminal and statistics are comparable to ALS, which already receives federal research funding. The NIH selected SMA as the disease closest to treatment and researchers estimate a treatment and cure could be found in less than five years IF given the resources. And because so much is known about SMA, many other diseases have already benefited from SMA research -- including ALS, Alzheimer's, the muscular dystrophies, and many more -- meaning this bill has the potential to benefit millions of people. Families impacted by SMA have worked tirelessly to bring research to this mature level. It is time for the government to step in and take research to the finish line and End SMA for good.
Dorothy Shuler
May 23, 2009, 12:21pm (report abuse)Imagine bringing your healthy baby home from the hospital...taking him to his first few pediatrician visits without incidence. Then you start to notice things like he's not really moving his arms and legs much. After insisting something doesn't seem right visiting with a neurologist and within minutes your concern of little arm and leg movement turns into the fact that your beautiful, happy, smiling 8 week baby boy has a TERMINAL disease, with NO TREATMENT and NO CURE. My husband and I were slightly worried that our son MIGHT need physical therapy for his low muscle tone before the visit with the neurologist - never in our darkest nightmares did we ever hear of SMA until the day our son Owen was diagnosed. We buried our baby boy when he was just 5 months and 9 days old. SMA killed our baby, and it's now our mission to Fight for him and all the families of SMA. THE CURE IS OUT THERE! Let's End SMA so no parent has to hear those words NO TREATMENT, NO CURE - ever again.
mieke verstraete
May 23, 2009, 12:37pm (report abuse)For the sake of these innocent children and all the other people, children or adults who will benefit from this important research, let's do what simply MUST be done.
Bill Strong
May 24, 2009, 12:09pm (report abuse)My precious daughter, Gwendolyn, was born perfectly healthy, but diagnosed with SMA, the leading genetic killer of young children, at 6 months old. We had no family history and no warning. 1 in every 6,000 babies is born with SMA and 1 in 30 people, or nearly 10 million Americans, is unknowingly carrying the gene responsible for it. There is currently no treatment and no cure, but there is HOPE.
Passage of this legislation will help provide researchers the resources necessary to end this horrible disease once and for all.
Please sign our petition, http://PetitionToCureSMA.com, in support of the SMA Treatment Acceleration Act. To date, we've received 60,000 signatures, but we need more support to get this legislation passed to end SMA.
For more information on Gwendolyn's journey with SMA, visit http://GwendolynStrong.com.
Devon
May 26, 2009, 12:07am (report abuse)My amazing son Dakin has a rare form of SMA called Spinal Muscular Atrophy with Respiratory Distress. As far as we are aware, there is no research going on in the US to help Dakin be able to come off his ventilator and out of his wheelchair someday. The Act may result in treatments that could be applied to his case. We must pass this bill.
Heidy Martinez
May 26, 2009, 12:39am (report abuse)As a mother of a beautiful 12 years old with SMA I ask our Congress, House of representatives and Governor to approve the SMA Treatment Acceleration Act. This is something that is not only going to benefit SMA but it will help find a cure to more than 600 neurological diseases. Please listen to our children the future of our nation. They need to have a chance at life and we are the ones that can give them that chance they can't do it on their own, so it's time to get together as 1 world and fight for our most precious Angels. We need to end SMA before is too late.
Kristin Talty
May 26, 2009, 11:48pm (report abuse)This is a horrible disease. Our government needs to act now! Children and families should not have to suffer with this disease due to ignorance and lack of funding. Nothing should stand in the way of a cure! The time is now to pass this bill. Fight for Owen!
Hally
May 27, 2009, 1:55pm (report abuse)Before someone votes again this bill, he/she needs to educate him/her self on how devastating this disease is. This bill is about children, whose lives depend on breathing ventilators and caught assists, feeding tubes and multiple spinal fusions.
Just imagine your little one going through this….
Cecilia
June 3, 2009, 4:45pm (report abuse)My nephew died of this horrible disease. It's a killer...until you educate yourself you shouldn't vote. Once you educate you WILL vote YES!
N Jaudoning
June 8, 2009, 11:28am (report abuse)Pass this approve the SMA Treatment Acceleration Act now so many are suffering from this and should be approved immediately without any more wait.
Also others who read this please help the Strong family go here;
Please sign our petition, http://PetitionToCureSMA.com
in support of the SMA Treatment Acceleration Act. To date, we've received 60,000 signatures, but we need more support to get this legislation passed to end SMA.
Jack SD
July 20, 2009, 5:44pm (report abuse)This bill needs to be passed now. So many lives are unnecessarily touched by this unforgiving disease. Let's find the cure and end the suffering.