S. 424: A bill to amend title IV of the Public Health Service Act to provide for a National Pediatric Research Network, including with respect to pediatric rare diseases or conditions.

We are so excited to share that NPRNA now has an official bill # after being introduced in the Senate!

S. 424

This bill was assigned to a congressional committee on February 28, 2013 (Rare Disease Day!), which will consider it before possibly sending it on to the House or Senate as a whole.

FightSMA wrote in a press release: 

Introducing the NPRNA on Rare Disease Day on Capitol Hill, Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS) continue their leadership from the 112th Congress by once again serving as the bill’s lead sponsors. Joining them as original cosponsors will be Senators Richard Blumenthal (D-CT), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Sheldon Whitehouse (D-RI). The NPRNA will now be referred to the Senate Health, Education, Labor and Pensions (HELP) committee, where it is expected to be considered by committee members in the coming weeks.

Now — on to the Senate and from there to desk of the President of the United States!

As this critical legislation is considered in the Senate, FightSMA needs your help. A phone call, letter or email to your senators can make all the difference.

Please help us build this critical support in the Senate by writing your Senator through their website and also phoning the Capitol Hill office. You can copy and paste the draft letter below for email or fax.  We’ve also listed talking points. Here’s a link that could be helpful:http://www.senate.gov/general/contact_information/senators_cfm.cfm .  When you write or call, we strongly encourage you to mention your family’s story and experience with SMA.

(Letter to be sent via Senator’s website)

Dear Senator ____________,

 

Here in [STATE], I’ve had the privilege to be involved with FightSMA, a non-profit organization of families in our state and across the country working to find a treatment for spinal muscular atrophy (SMA), the leading genetic killer of children under two.  Along with millions of other families living with rare pediatric diseases, I am proud to support S.424, the National Pediatric Research Network Act (NPRNA).  I write you today to ask for your support in passing this critical legislation, which will lead to increased research and enhanced treatments of devastating pediatric diseases.

The NPRNA was introduced in the U.S. Senate on February 28, 2013, by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS).  The bipartisan coalition of original cosponsors includes Senators Richard Blumenthal (D-CT), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Sheldon Whitehouse (D-RI).  Senate introduction of the NPRNA comes just weeks after the House of Representatives passed the NPRNA by an overwhelming 375-27 bipartisan vote, thanks to the leadership of Reps. Lois Capps (D-CA), Cathy McMorris Rodgers (R-WA), Fred Upton (R-MI) and Eric Cantor (R-VA).
My family and others in [STATE] are thrilled that the Senate will begin consideration of the NPRNA and we anticipate that the legislation will receive additional broad bipartisan support as it advances.  For more information on the bill, please feel free to contact Valarie Molaison in Sen. Brown’s office (Valarie_Molaison@brown.senate.gov) or Sarah Lloyd Allred in Sen. Wicker’s office (SarahLloyd_Allred@wicker.senate.gov). 
Thank you very much for your consideration.  Your support would mean the world to [STATE] families, and we are ready to do whatever it takes to help move this provision across the finish line.

 

Sincerely,

________

(Talking points for phone call)

  • I am a constituent of Senator NAME
  • I am phoning today to urge Senator NAME to cosponsor the National Pediatric Research Network Act of 2013 (S. 424/H.R. 225)
  • This legislation will benefit SMA and other rare diseases.
  • There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
  • Mention your family’s story and experience with SMA.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across STATE
  • Thank you for your consideration!

Many thanks for all that you have done to make this happen.

Meeting With Senator Burr

Today was a really special day for our family. We had an opportunity to meet with U.S. Senator Burr (R-NC) and share our thoughts regarding pending legislation that would impact those with rare pediatric diseases. He was very receptive and eager to assist when he returns to Washington! WE.JUST.WANT.A.CURE!!!

The National Pediatric Research Network Act of 2013 (H.R. 225) Passes The House!

“House Overwhelmingly Approves Bipartisan Committee Legislation to Support Pediatric Health Care.”

WATCH: Chairman Fred Upton on the House floor. He mentions meeting with our family and our little princesses, “Sleeping Beauty and Cinderella.” We are so thankful for his support!

The bipartisan National Pediatric Research Network Act (H.R. 225), authored by Reps. Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA), would allow NIH to fund pediatric research networks comprised of a consortia of institutions that will cooperate in conducting research on conditions and diseases, such as Spinal Muscular Atrophy, affecting children. H.R. 225 was approved by a vote of 375 to 27.

H.R. 225, National Pediatric Research Network Act of 2013 PASSES markup by unanimous consent.

Tuesday, January 22, 2013 - 10:00am

The House Energy and Commerce Committee’s Health Subcommittee for the 113th Congress passed H.R. 225 -  the National Pediatric Research Network Act of 2013.  Spinal muscular atrophy (SMA) was singled out as one of the rare pediatric disorders for which this bill will impact.

H.R. 225, National Pediatric Research Network Act of 2013 passes mark up by unanimous consent.

Watch the video here:

http://energycommerce.house.gov/markup/committee-organizational-meeting-113th-congress

H.R. 225: National Pediatric Research Network Act of 2013

Sadly, the National Pediatric Research Network Act (S.3461 / H.R. 6163) did not pass in the 112th Congress.

With that news, we are SO thankful to know that on January 14th, 2013 Congresswomen Lois Capps (CA) re-introduced the National Pediatric Research Network Act (H.R.225) in the United States House of Representatives.  This bipartisan legislation will create a national network focused on accelerating clinical trials for pediatric rare diseases, including SMA.

We are so hopeful it will pass in this 113th Congress!!

Track it with us!

GovTrack: http://www.govtrack.us/congress/bills/113/hr225/text

The Library of Congress: http://thomas.loc.gov/cgi-bin/bdquery/z?d113:HR00225:@@@X

How YOU Can Help! - NPRNA in the Senate!

FightSMA has provided a sample letter and talking points for a phone call to your US Senator’s office. Please read their press September 20, 2012 release below: 

“FightSMA’s legislative efforts in Washington have taken another important step forward. Senate Bill 3461, the Senate companion to the House of Representatives’ National Pediatric Research Network Act (H.R. 6163), was introduced last evening by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS). Like the House version introduced July 19, the Senate bill directs the National Institutes of Health to support the formation of pediatric research consortia and calls for a number of these consortia to focus on conducting multisite clinical trials and translational research on rare pediatric disorders, with a specific mention of SMA.

The effort to build support for the bill is underway, with Senators John Kerry (D-MA), Mark Begich (D-AK), Sheldon Whitehouse (D-RI) and Richard Blumenthal (D-CT) already signing on as cosponsors. FightSMA will be working throughout the August congressional recess with members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) to press for committee consideration of the bill and seek additional cosponsorship. Similarly, we will continue our legislative push in the House alongside our two sponsors, Reps. Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA).”

WE NEED YOUR HELP!

Please send a letter and/or call your US Senator’s office and ask them to co sponsor NPRNA because SMA and all pediatric rare diseases matter!  

Click HERE for your Senator’s contact information. 

SAMPLE LETTER:

Dear Senator [NAME]:

On behalf of families like mine across [STATE] who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO). Whitehouse (RI), Begich (AK) Blumenthal(CT) and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across [STATE]. Thank you so much for your consideration.

Sincerely,

[YOUR NAME]

OR (Talking Points for phone call):

  • I am a constituent of Senator [NAME]
  • I am phoning today to urge Senator [NAME] to cosponsor the National Pediatric Research Network Act (S.3461/H.R. 6163)
  • This legislation will benefit SMA and other rare diseases.
  • There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across [STATE]
  • THANK YOU FOR OUR CONSIDERATION

- FightSMA press release dated September 21, 2012.

How YOU Can Help? - NPRNA in the Senate!

FightSMA has provided a sample letter and talking points for a phone call to your US Senator’s office. Please read their press September 20, 2012 release below: 

“FightSMA’s legislative efforts in Washington have taken another important step forward. Senate Bill 3461, the Senate companion to the House of Representatives’ National Pediatric Research Network Act (H.R. 6163), was introduced last evening by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS). Like the House version introduced July 19, the Senate bill directs the National Institutes of Health to support the formation of pediatric research consortia and calls for a number of these consortia to focus on conducting multisite clinical trials and translational research on rare pediatric disorders, with a specific mention of SMA.

The effort to build support for the bill is underway, with Senators John Kerry (D-MA), Mark Begich (D-AK), Sheldon Whitehouse (D-RI) and Richard Blumenthal (D-CT) already signing on as cosponsors. FightSMA will be working throughout the August congressional recess with members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) to press for committee consideration of the bill and seek additional cosponsorship. Similarly, we will continue our legislative push in the House alongside our two sponsors, Reps. Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA).”

WE NEED YOUR HELP!

Please send a letter and/or call your US Senator’s office and ask them to co sponsor NPRNA because SMA and all pediatric rare diseases matter!  

Click HERE for your Senator’s contact information. 

SAMPLE LETTER:

Dear Senator [NAME]:

On behalf of families like mine across [STATE] who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.

SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO). Whitehouse (RI), Begich (AK) Blumenthal(CT) and Kerry (MA).

This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.

We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across [STATE]. Thank you so much for your consideration.

Sincerely,

[YOUR NAME]

OR (Talking Points for phone call):

  • I am a constituent of Senator [NAME]
  • I am phoning today to urge Senator [NAME] to cosponsor the National Pediatric Research Network Act (S.3461/H.R. 6163)
  • This legislation will benefit SMA and other rare diseases.
  • There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
  • The Senator’s co sponsorship of NPRNA would mean the world to me and other families across [STATE]
  • THANK YOU FOR OUR CONSIDERATION

- FightSMA press release dated September 21, 2012.

US House Passes National Pediatric Research Network Act (NPRNA)!

We are thrilled to share this exciting news with you!

US Representative Fred Upton showing the Kalamazoo Parent magazine cover picture of Brielle on the House floor asking for support for “The National Pediatric Research Network Act (H.R. 6163). Moments later, the bill was passed! A monumental day for SMA! — at U.S. House of Representatives.

On September 19th, 2012 the (bipartisan) National Pediatric Research Network Act (NPRNA) unanimously passed the United States House of Representatives! This is a bill that would have a direct impact on Spinal Musuclar Atrophy and many other rare diseases. We have worked closely with FightSMA, the SMA leaders in Washington, and our own West Michigan Representative, Chairman Upton! We are so thankful for his dedication to this bill and so honored that Mr. Upton spoke about meeting our family on the floor of Congress during its passage from the full House (see video below). I had happy tears streaming down my face when I watched this live on C-SPAN.  In fact, it gives me happy tears every time I re-watch it on Youtube.  This is such a huge accomplishment and one of the most amazing things to feel like WE ARE making a difference in the fight against SMA!

But we’re not done… next it goes to the Senate, then the President’s desk!!!!!!

~~~~~~~~~~

We could not agree with TheGSF more:

“This bipartisan legislation would not have happened if it were not for the vision and leadership of FightSMA, without Representative Capps’ dedicated advocacy of SMA and children’s causes, or without the collaboration of Representatives McMorris Rodgers (WA), Diana DeGette (CO), Committee Chair Fred Upton (MI) and House Majority Leader Eric Cantor (VA) — and the families facing SMA and other rare disease across the country who have inspired their legislators.

Now let’s rally together and lend our voices to get NPRNA onto the President’s desk!”  

~~~~~~~~~~

Watch the C-SPAN video of NPRNA passing the House, September 19th, 2012 on a unanimous voice vote! Representative Upton mentioned Brielle and Brooke in his speech on the House Floor (as “Cinderella” and Sleeping Beauty”).

 

FDA Week: Pediatric Rare Disease Group Works To Advance Clinical Research Bill

The following article about the National Pediatric Research Network Act (NPRN) was posted in this week’s edition of the Washington newsletter FDA Week!

 

Bipartisan legislation aimed at expanding the National Institutes of Health’s investments in pediatric research through the creation of pediatric research consortia could work with newly enacted provisions in the FDA Safety and Innovation Act aimed at accelerating drug approvals, according to an advocacy group spearheading the effort. FightSMA, the group backing the legislation, is pushing for the House Energy and Commerce Committee to take up the bill when it returns from August recess.

The National Pediatric Research Network Act, introduced by Reps. Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA), directs NIH to establish a National Pediatric Research Network consisting of up to 20 pediatric research consortia over a five year period that would be eligible for awards, including grants, for basic, clinical, behavioral or translational research to meet unmet pediatric population needs, including rare diseases.

The legislation is aimed at improving clinical trials to quickly move promising drugs to approval, said Steven Eichenauer, a partner at Public Strategies Washington, who is working with FightSMA to pass the legislation.

Eichenauer added the bill would bolster research that could utilize the recently expanded accelerated approval pathway, a provision in FDASIA. He said the National Pediatric Research Network Act would help put drugs in the pipeline that can then be sent to FDA for approval, providing “a supply of newly minted therapies that have shown promise in clinical trials and are now before FDA.”

The bill would ensure these consortia focus on conducting or coordinating multisite clinical trials for pediatric rare diseases, and would establish a data coordinating center to distribute the findings, including to FDA. The consortia would be modeled after the National Cancer Institute centers and would ensure funds are dedicated exclusively towards basic and translational pediatric research and would enable inter-institutional networking, according to FightSMA. The group works to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the leading inherited cause of infant death, according to the group.

Martha Slay, co-founder of FightSMA, said the group decided to take a broader approach with the currently introduced legislation than it has in past efforts, which focused specifically on spinal muscular atrophy.

“I consider this a really historic moment for SMA and other pediatric rare diseases, going from obscurity to a place where something significant and material could be done to make clinical trials available to children who desperately need it,” she said.

Reps. Diana DeGette (D-CO), Gregg Harper (R-MS) and Peter King (R-NY) are cosponsors and a companion bill in the Senate was introduced by Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS), and is co-sponsored by Sens. Sheldon Whitehouse (D-RI), John Kerry (D-MA), Richard Blumenthal (D-CT) and Mark Begich (D-AK).

Eichenauer said the group is pressing for consideration of the bill by the House Energy and Commerce Committee when lawmakers return to Washington in September as several sponsors sit on the panel. He said committee staff have been involved in writing the legislation and it has been vetted by the committee. “The committee knows the bill well,” he said. Further, FightSMA said House Majority Leader Eric Cantor (R-VA) is a longtime supporter of their cause.

Eichenauer said the group hopes the House could approve the legislation on the suspension calendar and then the bill could come before the Senate. Some cosponsors of the bill also sit on the Senate health committee, which FightSMA has also been working with on the legislation. Eichenauer added the group doesn’t know if the bill will move on its own or will be attached to a bigger package. Sources have said moving any legislation before the elections could be difficult.

Eichenauer said sponsors of the measure are exploring the possibility of a score from the Congressional Budget Office, but said it would not affect FightSMA’s ability to move forward with the bill. The legislation could also face difficulty with the looming “fiscal cliff.”

“There is no question that federal funding is going to be a challenge now and in the coming fiscal year,” Eichenauer said. “One of the chief advantages (of the bill), is that it does use federal dollars in a more highly-leveraged way. It takes infrastructure that is already there and expands it to leverage those dollars smartly.”

FightSMA is working over the recess to gather support in Congress and among other groups, with the Coalition for Pediatric Research, the National Down Syndrome Society and the Parent Project Muscular Dystrophy endorsing the bill. Eichenauer said sponsors have discussed reaching out to other groups, including the National Organization for Rare Disorders. — Nanci Bompey

- FightSMA press release dated August 24, 2012.

A Visit To Senator Kay Hagan's Office In North Carolina!

Today we made a trip downtown Charlotte, NC to share our story with U.S. Senator Kay Hagan’s Regional Liaison, Carrie, hoping to get support on The Pediatric Research Network Act (H.R. 6163).

The Pediatric Research Network Act would establish up to 20 pediatric research consortia and support multisite clinical trials for rare diseases like SMA.  The meeting went really well and we hope to have the Senator’s support!  

Carrie was happy to share with us that Sen. Hagan introduced the Transforming the Regulatory Environment to Accelerate Access to Treatments (T.R.E.A.T) Act.  It was signed into law July 9 as part of the Food and Drug Administration Safety and Innovation Act.  

This quote was taken from the Fayetteville Observer:
“In North Carolina and across the country, thousands are living with diseases for which there are no adequate treatments - or no treatments at all,” Hagan said in release last week. “The TREAT Act establishes a clear and effective pathway for turning ideas into cures, and cures into life-saving treatments for patients with rare and life-threatening diseases. I am hopeful that the (act) will bring renewed hope to these patients and their families.”  (Get the full story here.)
We are so thankful for the time her office took to listen to our story, meet Brooke and Brielle and become educated about Spinal Muscular Atrophy!  

Brooke and Brielle at Senator Kay Hagan’s office with her Liaison, Carrie

 

 

National Pediatric Research Network Act Takes Another Big Step

FightSMA’s legislative efforts in Washington have taken another important step forward. Senate Bill 3461, the Senate companion to the House of Representatives’ National Pediatric Research Network Act (H.R. 6163), was introduced last evening by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS). Like the House version introduced July 19, the Senate bill directs the National Institutes of Health to support the formation of pediatric research consortia and calls for a number of these consortia to focus on conducting multisite clinical trials and translational research on rare pediatric disorders, with a specific mention of SMA.

The effort to build support for the bill is underway, with Senators John Kerry (D-MA), Mark Begich (D-AK), Sheldon Whitehouse (D-RI) and Richard Blumenthal (D-CT) already signing on as cosponsors. FightSMA will be working throughout the August congressional recess with members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) to press for committee consideration of the bill and seek additional cosponsorship. Similarly, we will continue our legislative push in the House alongside our two sponsors, Reps. Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA).

- FightSMA press release dated August 1, 2012.

FightSMA Announces Introduction in the House of Representatives of the National Pediatric Research Network Act (NPRNA)

ALEXANDRIA, VA. July 20, 2012—A bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) was introduced yesterday in the U.S. House of Representatives.

The bipartisan bill, called the National Pediatric Research Network Act (NPRNA) is being introduced by Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA). It is designed in part to help achieve the goal of securing additional federal resources to accelerate clinical trials for spinal muscular atrophy (SMA).

“We are thrilled about this bill which is the result of the dedication of so many in the SMA community,” said Martha Slay, founder and immediate past president of FightSMA. “Legislation to benefit SMA is at the heart of the FightSMA mission.”

“Over the past year, FightSMA has worked with our champions in the Congress, Representatives McMorris Rodgers and Lois Capps, on this important legislationWith the support of longtime FightSMA ally House Majority Leader Eric Cantor (R-VA), these two key members of the House Energy and Commerce Committee’s Subcommittee on Health have collaborated to craft bipartisan legislation that will advance translational research and clinical trials for a variety of rare pediatric disorders, with SMA serving as a model disease,” said Ms. Slay.

“I am proud to join Rep. Capps in introducing the very important National Pediatric Research Network Act.  She has been an instrumental leader in the fight to promote pediatric research for genetic disorders, especially spinal muscular atrophy and Down syndrome,” said Rep. McMorris Rodgers.  “As the mother of a son with Down syndrome, I am confident this legislation will go a long way to improving the lives of those with genetic disorders.  I look forward to working in a bipartisan way to make sure this bill is signed into law.”

“I am proud to co-author this legislation with my friend  (Rep.) Cathy McMorris Rodgers, which would go a long way to increasing and improving research on children’s illnesses–especially rare and complex diseases–and developing new treatments to fight them,” said Congresswoman Capps. “Every parent’s worst fear is that their child becomes sick, and we owe it to all parents to do what we can to fight childhood illnesses.  I would also like to thank my constituents, Bill and Victoria Strong, for their tireless work on behalf of their daughter, Gwendolyn, and all children with Spinal Muscular Atrophy and other rare diseases. Their dedication to fighting this terrible disease has been an inspiration for me and a driving force behind this bill,” said Congresswoman Capps.

Expanding on a previous pediatric research measure by Congresswoman Diana DeGette (D-CO), the bill calls for an appropriate number of new consortia to focus primarily on rare diseases, and specifically mentions SMA among the diseases that should be included.  The bill directs NIH to support consortia that conduct multisite clinical trials of therapies for pediatric rare diseases.

“FightSMA and our congressional sponsors have collaborated directly with senior health staff on the House Energy and Commerce Committee in drafting this legislation,” said Mike Calise, Chair of the FightSMA Board of Directors, “and we will continue to work with them to ensure that the committee considers the bill in a timely manner.”

The process of building bipartisan support for a companion bill in the Senate has begun, working with the Senate Committee on Health, Education, Labor and Pensions (HELP). FightSMA’s objective is to have a bill introduced in the Senate as early as possible. “We will continue to push aggressively for enactment of this important legislation in 2012,” said Calise.

- FightSMA press release dated July 20, 2012.