H.R. 2149 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: 4/28/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.
Points in Favor
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Points Against
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Visitor Comments
Victoria Strong
May 6, 2009, 3:37pm (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.
RitaW
(logged in user) May 6, 2009, 4:27pm (report abuse)As a mom who lost her 5 month old son to SMA, I am very saddened to see the 30% voting against this bill. How does one decide to vote against saving babies?
Elizabeth Vandiver
May 7, 2009, 12:15am (report abuse)My 19 month old niece Gwendolyn Strong has SMA. She is fully mentally capable. However, she can't sit, swallow, move, speak, and eats with a feeding tube. She is nursed by her parents around the clock. Scientists are very close to a cure and they need your funding to get them there. A cure for SMA will also lead to a cure for many other neurological disorders as well. Children with SMA deserve a shot at life. Help the medical community get us there. Please support HR2149 and support children with SMA. SMA must be acknowledged and a cure must be found. We need you Congress! Give SMA babies a voice!
Sara K.
May 7, 2009, 1:07am (report abuse)There are so many reasons to vote for this; so many little babies needing YOUR help right now.
Stella C
May 7, 2009, 5:12am (report abuse)My baby girl Lilly passed away just 2 months ago from SMA. 1 in 30 people carry the gene...it is the number 1 genetic killer of children under 2! We need a cure now and the US government is our only hope. I know they have nothing here in Australia. The US need to lead the world in the right direction so that governments around the world can take notice of this horrible disease and stop parents from experiencing the same heartache we have.
Raj Peshawaria
May 7, 2009, 6:38am (report abuse)My son Rishi passed away from SMA almost 5 years ago now. It's an absolutely tragic condition which exists. Chilren are our future, not our past. We need to unite and fight this currently incurable condition. So many lives are being wasted whilst we debate on whether or not to pass this Bill. Surely something as important as this requires no debate? I urge and beg all of you that read this to cast your support. Please do not let anymore innocent lives be taken by SMA.
Dorothy Shuler
May 7, 2009, 4:19pm (report abuse)My beautiful son Owen, lost his battle to SMA type 1 on August 16, 2008. He was only 5 months old. Researchers are so close to a cure...Please pass this bill because no parent should have to bury their baby.
LauriePotter
(logged in user) May 7, 2009, 7:58pm (report abuse)Another mom here who lost her first born to SMA, nearly 7 years ago. It IS too late for my son Marshall, but it is NEVER too late to save the thousands of babies who will be born with SMA in the future. If it were your child with an incurable illness, would you not fight with your every ounce to help expedite a treatment or cure? Please pass this bill . . . and hug your children often. I have one I will never be able to hug again. Miss you, MD!
Donna Trakas
May 8, 2009, 11:30pm (report abuse)Our daughter passed away at 7 1/2 months old from Type I SMA. PLEASE pass this bill. This is your opportunity to make a REAL difference. You would without question support this bill if it were your child. Put yourselves in our shoes, and imagine for one minute the devastation of this disease on sweet, innocent, cognitively normal children. SMA is NOT that rare!
Donna Taylor-Campbell
May 20, 2009, 11:46pm (report abuse)My sweet daughter, Hannah Jean Campbell, passed away on October 18, 2008 from Spinal Muscular Atrophy Type 1. We loved her and did the best jobs as parents as we could, and yet she did not have the chance to share her many wonderful qualities with the world. Please have compassion for all of our children suffering from this disease, we need to all we can to find a cure.
Laurie DeVault
May 21, 2009, 6:26am (report abuse)My beautiful Granddaughter Hannah Jean Campbell died from spinal muscular atrophy type 1. She was 9 months old. Please pass this bill to find a cure or to prevent this devastating genetic killer.
Please visit http://www.caringbridge.org/visit/hannahcampbell/journal/10
to see how SMA type1 children and families suffer. Thank you.
Karin Vallo
May 21, 2009, 11:14am (report abuse)Our granddaughter Desiree's has SMA Type 2. She is almost 8 years old and just went thru (2) operations this months. She is a real fighter. She has been lobbying personally with us in congress, since she was 3 years old. Please pass the bill! We need to find treatment/cure for this horrible disease! PS. We started a foundation here in Albuquerque to help raise fund for research but we need a lot more funds to start the clinical trials.Other neurological disorder will also benefit!
Matthew Campbell
May 23, 2009, 1:13am (report abuse)In loving memory of my daughter Hannah Jean Campbell. She was 9 months old. For all the other families that have strive and cope with this terrible disease. And, for all the families that have yet to find out... How devestating it is to provide the quality of life for our sons and daughters. Please visit http://www.caringbridge.org/visit/hannahcampbell/journal/10
Jason DeVault
May 23, 2009, 10:14pm (report abuse)We lost a 9 month old baby in our family to SMA type1. There are four "Types" of SMA, Type 1,2,3 & 4. The earlier the symptoms are noticed, the more severe the type of SMA. Type 1 is the most severe, affecting children while still in the womb or shortly after birth. Please help the children by passing this. Thank you.
Bill Strong
May 24, 2009, 12:13pm (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.
Carrie Manriquez
June 1, 2009, 1:47pm (report abuse)My son, Ryan is 8 years old living with SMA type 2. He is a happy and loving kid who fully understands that he we be in a wheelchair for life. SMA is a progressive illness, meaning he will continue to weaken. We are not looking for a miracle to make him get up and walk. We are looking for a drug treatment that will stop the progression of his disease so we may spend many more years with him. We have been involved in a clinical drug trial, which we felt was "our part" to help researchers. Please do "your part" which is to write your elected officials supporting this bill. Thank you.
Patrice Fletcher
June 3, 2009, 9:14am (report abuse)Our son Joshua J Fletcher is a SMA Type 1. We live in Florida where there is no current clinical study; he is unable to travel very far. We need your help so that more babies born with this disease in areas where there is no expert Physician or clinical studies will also have a chance to beat this disease. Joshua will be 1 in a few days he has spent 5 months in the PICU he is Trached with 24hr ventilation and a G-tube. He has lost all his movement except is left index finger, but you should see his smile. Please help give my baby HOPE we are so close to a cure we need your help. Please support this bill.
Khristy
June 10, 2009, 1:08pm (report abuse)This bill is extremely important, my 7 year old son was diagnosed three years ago and has been struggling with this debilitating disease.
Sam Bonsett
July 9, 2009, 9:34pm (report abuse)My son just got diagnosed with TypeI SMA at the age of 4 months. He will die if there is not a cure or treatment soon. I have spoken to researchers and they are close to a cure but they need $$$ and clearence from the FDA to bring it home. Redirect a few million bucks from the TARP fund and save my son's life!