The SMA Treatment Acceleration Act is a bill originally introduced in 2007 in the United States Congress

United States Congress

The United States Congress is the bicameral legislature of the federal government of the United States, consisting of the Senate and the House of Representatives. The Congress meets in the United States Capitol in Washington, D.C....

 "to authorize the Secretary of Health and Human Services

United States Secretary of Health and Human Services

The United States Secretary of Health and Human Services is the head of the United States Department of Health and Human Services, concerned with health matters. The Secretary is a member of the President's Cabinet...

 to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases, and for other purposes."

Spinal Muscular Atrophy

Spinal Muscular Atrophy

Spinal muscular atrophy

Spinal Muscular Atrophy is a neuromuscular disease characterized by degeneration of motor neurons, resulting in progressive muscular atrophy and weakness. The clinical spectrum of SMA ranges from early infant death to normal adult life with only mild weakness...

 (SMA) is an inherited motor neuron disease that destroys the nerves controlling muscle movement, affecting crawling, walking, head and neck control, swallowing, and respiratory function. It is the leading genetic cause of death for children under the age of two. Approximately one in 40 people, or approximately 7.5 million Americans, carry the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being afflicted by the disease.

SMA research and the National Institute of Health

In the past few years, researchers have identified the gene responsible for SMA, called SMN 1, as well as a disease modifying “back-up” gene, called SMN2, that has resulted in new treatment pathways.

Because of the advanced genetic understanding of the disease, the National Institute of Health (NIH) identified SMA as the disease closest to treatment out of more than 600 neurological disorders. The NIH, a component of the Department of Health and Human Services, is a $29 billion Federal agency that has primary responsibility for funding much of the nation's basic medical research through grants to institutions of higher education and research facilities throughout the country. Although the disease is the leading genetic cause of death among children under two years of age, currently the NIH funds just $11 million in SMA research annually.

Features of the Act

Specifically, "The SMA Treatment Acceleration Act" provides for the following:

1. Federal support for a national clinical trials network for SMA.
2. Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA.
3. Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments.
4. Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research.
5. Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry.
6. Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public.

History of the 2007 version of the Bill

H.R. 3334, “The SMA Treatment Acceleration Act”, was introduced in 2007 in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA), as H.R. 2149/S. 1158. The Senate version of the bill, S. 2042 was introduced by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA). Although by the close of the 110th Congress on January 3, 2009, the SMA Treatment Acceleration Act had 85 cosponsors in the House of Representatives and 21 cosponsors in the Senate, or approximately 20 percent of each legislative body, Congress failed to pass the measure.

Status of the 2009 version of the Bill

After the 110th Congress’ failure to pass the 2007 version of the bill, the act was reintroduced in the 111th Congress in April 2009 as H.R. 2149 and S. 1158. Currently, responsibility for the bill in the House falls under the United States House Committee on Energy and Commerce

United States House Committee on Energy and Commerce

The Committee on Energy and Commerce is one of the oldest standing committees of the United States House of Representatives. Established in 1795, it has operated continuously—with various name changes and jurisdictional changes—for more than 200 years...

, chaired by Representative Henry Waxman (D-CA). In the Senate, the bill has been read twice and referred to the United States Senate Committee on Health, Education, Labor, and Pensions

United States Senate Committee on Health, Education, Labor, and Pensions

The United States Senate Committee on Health, Education, Labor, and Pensions generally considers matters relating to health, education, labor, and pensions...

, chaired by Sen. Thomas Harkin (D) of Iowa. After the bill’s reintroduction, various activist groups in the SMA community began a renewed drive to find cosponsors. As of February, 2010, 57 House members had signed on as cosponsors of the bill. Fifteen Senators had initiated or renewed their status as cosponsors. In February, 2010, Congressman Kennedy, who introduced both versions of the bill with Congressman Cantor, announced that he will not seek reelection after his term expires.

Prominent cosponsors

Currently, the 2009 version of the bill has received bipartisan support, including Sen. John Kerry (D-MA), Sen. Saxby Chambliss (R-GA), Sen. Kay Hagan (D-NC), Sen. Roger F. Wicker (R-MS), and Sen. Arlen Specter (D-PA). While still in the Senate, Barack Obama served as a cosponsor of the first version of the bill.

House cosponsors

• Sponsor: Rep. Patrick J. Kennedy
  Patrick J. Kennedy
  Patrick Joseph Kennedy II is the former U.S. Representative for , serving from 1995 until 2011. He is a member of the Democratic Party. The district includes all of Bristol County and Newport County, and parts of Providence County. Kennedy did not seek re-election in 2010.A member of the Kennedy...
  
   (RI)
• Rep. Rodney Alexander
  Rodney Alexander
  Rodney McKinnie Alexander is the U.S. Representative for , serving since 2003. He is a member of the Republican Party. The district covers twenty-two parishes in roughly the northeast quadrant of the state...
  
   (LA)
• Rep. Spencer Bachus
  Spencer Bachus
  Spencer Thomas Bachus III is the U.S. Representative for , serving since 1993. He is a member of the Republican Party and the senior member of the Alabama U. S. House delegation...
  
   (AL)
• Rep. Tammy Baldwin
  Tammy Baldwin
  Tammy Suzanne Green Baldwin is the U.S. Representative for Wisconsin's 2nd congressional district, serving since 1999. She is a member of the Democratic Party. In September 2011, Baldwin announced she would be a candidate in the 2012 U.S...
  
   (WI)
• Rep. Timothy H. Bishop (NY)
• Rep. Earl Blumenauer
  Earl Blumenauer
  Earl Blumenauer is the U.S. Representative for , serving since 1996. He is a member of the Democratic Party. The district includes most of Portland east of the Willamette River. A native of Portland, he previously spent over 20 years as a public official representing the city.-Early...
  
   (OR)
• Rep. Dan Boren
  Dan Boren
  Daniel David "Dan" Boren is the U.S. Representative for , serving since 2005. The district includes most of the eastern part of the state outside of Tulsa...
  
   (OK)
• Rep. Rick Boucher
  Rick Boucher
  Frederick Carlyle "Rick" Boucher is the former U.S. Representative for , serving from 1983 until 2011. He is a member of the Democratic Party.-Early life, education and career:...
  
   (VA)
• Rep. Bruce L. Braley (IA)
• Rep. G. K. Butterfield
  G. K. Butterfield
  George Kenneth Butterfield, Jr. is the U.S. Representative for , serving since 2004. He is a member of the Democratic Party. The district is located in the northeastern corner of the state.-Early life and education:...
  
   (NC)
• Rep. Eric Cantor
  Eric Cantor
  Eric Ivan Cantor is the U.S. Representative for Virginia's 7th congressional district, serving since 2001. A member of the Republican Party, he became House Majority Leader when the 112th Congress convened on January 3, 2011...
  
   (VA)
• Rep. Lois Capps (CA)
• Rep. Christopher P. Carney (PA)
• Rep. Kathy Castor
  Kathy Castor
  Kathy Castor is the U.S. Representative for , serving since 2007. She is a member of the Democratic Party.The district covers most of the city of Tampa, most of south St...
  
   (FL)
• Rep. Donna M. Christensen (VI)
• Rep. Yvette D. Clarke
  Yvette D. Clarke
  Yvette Diane Clarke is the U.S. Representative for , serving since 2007, and the Chair of the United States House Homeland Security Subcommittee on Emerging Threats, Cybersecurity, Science and Technology since 2007 as well...
  
   (NY)
• Rep. Jim Cooper
  Jim Cooper
  James Hayes Shofner "Jim" Cooper is the U.S. Representative for , serving since 2003. He is a member of the Democratic Party and the Blue Dog Coalition. He previously represented from 1983 to 1995....
  
   (TN)
• Rep. Charles W. Dent (PA)
• Rep. Steve Driehaus
  Steve Driehaus
  Steven L. "Steve" Driehaus is the former U.S. Representative for , serving from 2009 until 2011. He is a member of the Democratic Party...
  
   (OH)
• Rep. Anna G. Eshoo (CA)
• Rep. John Fleming (LA)
• Rep. J. Randy Forbes (VA)
• Rep. Jeff Fortenberry
  Jeff Fortenberry
  Jeffrey Lane "Jeff" Fortenberry, born December 27, 1960) is the U.S. Representative for , serving since 2005. He is a member of the Republican Party. The district is based in Lincoln and includes most of the eastern third of the state outside the immediate Omaha area.-Early life, education and...
  
   (NE)
• Rep. Barney Frank
  Barney Frank
  Barney Frank is the U.S. Representative for . A member of the Democratic Party, he is the former chairman of the House Financial Services Committee and is considered the most prominent gay politician in the United States.Born and raised in New Jersey, Frank graduated from Harvard College and...
  
   (MA)
• Rep. Bob Goodlatte
  Bob Goodlatte
  Robert William "Bob" Goodlatte is the U.S. Representative for , serving since 1993. He is a member of the Republican Party. The district is based in Roanoke and also includes Lynchburg, Harrisonburg and Staunton.-Early life, education and career:...
  
   (VA)
• Rep. Bart Gordon
  Bart Gordon
  Barton Jennings "Bart" Gordon, is a lawyer and former U.S. Representative for , serving from 1985 until 2011. The district includes several rural areas and fast-growing suburbs east of Nashville. He was Chairman of the House Committee on Science and Technology from 2007 until 2011. He is a member...
  
   (TN)
• Rep. Gene Green
  Gene Green
  Raymond Eugene "Gene" Green is the U.S. Representative for , serving since 1993. He is a member of the Democratic Party...
  
   (TX)
• Rep. John J. Hall (NY)
• Rep. Ralph M. Hall (TX)
• Rep. Gregg Harper
  Gregg Harper
  Gregory "Gregg" Harper is the U.S. Representative for , serving since 2009. He is a member of the Republican Party. The district includes the wealthier portions of the state capital, Jackson, along with most of that city's suburbs. Other cities in the district include Meridian and Natchez.-...
  
   (MS)
• Rep. Martin Heinrich
  Martin Heinrich
  Martin T. Heinrich is the U.S. Representative for , serving since 2009. He is a member of the Democratic Party.The district includes the central area of the state, in and around Albuquerque.- Early life, education and career :...
  
   (NM)
• Rep. Stephanie Herseth Sandlin (SD)
• Rep. Brian Higgins
  Brian Higgins
  Brian Higgins is the U.S. Representative for , serving since 2005. He is a member of the Democratic Party. The district includes the southern two-thirds of Buffalo proper, most of that city's eastern and southern suburbs, and all of Chautauqua County.-Early life, education and career:A native of...
  
   (NY)
• Rep. James A. Himes
  Jim Himes
  James A. "Jim" Himes is an American businessman and U.S. Representative for , serving since 2009. He is a member of the Democratic Party....
  
   (CT)
• Rep. Tim Holden
  Tim Holden
  Thomas Timothy "Tim" Holden is the U.S. Representative for , serving since 1993. He is a member of the Democratic Party.-Early life, education and career:...
  
   (PA)
• Rep. Steve Israel
  Steve Israel
  Steve J. Israel is the U.S. Representative for , serving since 2001. He is a member of the Democratic Party. The district is located on Long Island and includes the towns of Huntington, Babylon, Islip, and Smithtown in Suffolk County, part of the town of Oyster Bay in Nassau County, and the...
  
   (NY)
• Rep. Henry C. "Hank" Johnson, Jr.
  Hank Johnson
  Henry C. "Hank" Johnson Jr. is the U.S. Representative for , serving since 2007. He is a member of the Democratic Party. The district is based in DeKalb County, a largely suburban county east of Atlanta. It also includes portions of Gwinnett and Rockdale counties.-Life, education and...
  
   (GA)
• Rep. Walter B. Jones, Jr. (NC)
• Rep. Steve Kagen
  Steve Kagen
  Steven Leslie Kagen, M.D. is a physician and was the U.S. Representative for , serving from 2007 to 2011. He is a member of the Democratic Party...
  
   (WI)
• Rep. Dale E. Kildee
  Dale E. Kildee
  Dale Edward Kildee is the U.S. Representative for Michigan's 5th congressional district, serving since 1977. He is a member of the Democratic Party. The district includes Flint, Saginaw and Bay City...
  
   (MI)
• Rep. Ron Kind
  Ron Kind
  Ronald James "Ron" Kind is the U.S. Representative for , serving since 1997. He is a member of the Democratic Party. His district is located in the western portion of the state and is anchored by La Crosse and Eau Claire and Platteville....
  
   (WI)
• Rep. Peter T. King
  Peter T. King
  Peter T. "Pete" King is the U.S. Representative for , serving since 1993. He is a member of the Republican Party. King's central Long Island district includes parts of Nassau and Suffolk counties....
  
   (NY)
• Rep. James R. Langevin (RI)
• Rep. Barbara Lee
  Barbara Lee
  Barbara Jean Lee is the U.S. Representative for , serving since 1998. She is a member of the Democratic Party. She is the first woman to represent that district. Lee was the Chair of the Congressional Black Caucus and was the Co-Chair of the Congressional Progressive Caucus...
  
   (CA)
• Rep. Zoe Lofgren
  Zoe Lofgren
  Zoe Lofgren is the U.S. Representative for , serving since 1995. She is a member of the Democratic Party. The district is based in San Jose.-Early life, education, and early career:...
  
   (CA)
• Rep. Carolyn B. Maloney
  Carolyn B. Maloney
  Carolyn Bosher Maloney is the U.S. Representative for , serving since 1993. She is a member of the Democratic Party. The district, popularly known as the "silk stocking district", includes most of Manhattan's East Side; Astoria and Long Island City in Queens; and Roosevelt Island.-Early life,...
  
   (NY)
• Rep. Eric J. J. Massa
  Eric Massa
  -March to the Primaries:Freshman incumbent Randy Kuhl had been elected to Congress with slightly over 50% of the popular vote in a three way race in 2004. In early 2005, former U.S. Naval officer Eric J.J. Massa, a long-time friend of 2004 presidential candidate General Wesley Clark filed to run...
  
   (NY)
• Rep. Michael T. McCaul (TX)
• Rep. Thaddeus G. McCotter (MI)
• Rep. Mike McIntyre
  Mike McIntyre
  Douglas Carmichael "Mike" McIntyre II is the U.S. Representative for , serving since 1997. He is a member of the Democratic Party....
  
   (NC)
• Rep. Cathy McMorris Rodgers (WA)
• Rep. Gregory W. Meeks (NY)
• Rep. James P. Moran (VA)
• Rep. Grace F. Napolitano (CA)
• Rep. Glenn C. Nye, III
  Glenn Nye
  Glenn Carlyle Nye III is the former U.S. Representative for , serving from 2009 until 2011. He is a member of the Democratic Party...
  
   (VA)
• Rep. Collin C. Peterson (MN)
• Rep. Ted Poe
  Ted Poe
  Lloyd "Ted" Poe is a Republican politician currently representing Texas's 2nd congressional district in the United States House of Representatives. The district includes most of northern Houston, as well as most of the Beaumont-Port Arthur metropolitan area. He is the first Republican to ever...
  
   (TX)
• Rep. Tom Price (GA)
• Rep. Adam H. Putnam (FL)
• Rep. Harold Rogers
  Hal Rogers
  Harold Dallas "Hal" Rogers is the U.S. Representative for , serving since 1981. He is a member of the Republican Party.-Early life, education, and early career:...
  
   (KY)
• Rep. Ileana Ros-Lehtinen
  Ileana Ros-Lehtinen
  Ileana Ros-Lehtinen is the U.S. Representative for , serving since 1989. She is a member of the Republican Party....
  
   (FL)
• Rep. Steven R. Rothman (NJ)
• Rep. Bobby L. Rush (IL)
• Rep. Robert C. "Bobby" Scott (VA)
• Rep. Joe Sestak (PA)
• Rep. Louise McIntosh Slaughter
  Louise McIntosh Slaughter
  Louise McIntosh Slaughter is the U.S. Representative for New York's 28th congressional district, serving since 1993, and Chair of the House Rules Committee from 2007 until 2011. She is a member of the Democratic Party. The district is based in Rochester and Buffalo and includes parts of Erie,...
  
   (NY)
• Rep. Fortney Pete Stark (CA)
• Rep. Bennie G. Thompson (MS)
• Rep. Patrick J. Tiberi (OH)
• Rep. Edolphus Towns (NY)
• Rep. Debbie Wasserman Schultz
  Debbie Wasserman Schultz
  Debbie Wasserman Schultz is the U.S. Representative for , serving since 2005. She is a member of the Democratic Party and the Chairwoman of the Democratic National Committee. She previously served in the Florida House of Representatives and the Florida Senate...
  
   (FL)
• Rep. Lynn A. Westmoreland (GA)
• Rep. Charles A. Wilson
  Charlie Wilson (Ohio politician)
  Charles A. "Charlie" Wilson is the former U.S. Representative for . He is a member of the Democratic Party. He previously served in the Ohio State Senate and the Ohio House of Representatives...
  
   (OH)
• Rep. Joe Wilson
  Joe Wilson (U.S. politician)
  Addison Graves Wilson, Sr., most commonly known as Joe Wilson , is the U.S. Representative for , serving since 2001. He is a member of the Republican Party...
  
   (SC)
• Rep. Robert J. Wittman (VA)
• Rep. Frank R. Wolf (VA)
• Rep. David Wu
  David Wu
  David Wu is an American politician who served as the U.S. representative for from 1999 to 2011. He is a member of the Democratic Party.The district includes most of Portland west of the Willamette River, as well as all of Yamhill, Columbia, Clatsop, and Washington Counties...
  
   (OR)
• Rep. C.W. Bill Young (FL)

Senate cosponsors

• Sponsor: Sen. Debbie Stabenow
  Debbie Stabenow
  Deborah Ann Greer "Debbie" Stabenow is the junior United States Senator from Michigan and a member of the Democratic Party. Before her election to the U.S. Senate, she was a member of the United States House of Representatives, representing Michigan's 8th congressional district from 1997 to 2001...
  
   (MI)
• Sen. Sherrod Brown
  Sherrod Brown
  Sherrod Campbell Brown is the senior United States Senator from Ohio and a member of the Democratic Party. Before his election to the U.S. Senate, he was a member of the United States House of Representatives, representing Ohio's 13th congressional district from 1993 to 2007...
  
   (OH)
• Sen. Richard Burr
  Richard Burr
  Richard Mauze Burr is the senior United States Senator from North Carolina and a member of the Republican Party. Previously, Burr represented North Carolina's 5th congressional district in the United States House of Representatives....
  
   (NC)
• Sen. Saxby Chambliss
  Saxby Chambliss
  Clarence Saxby Chambliss, Jr. is the senior United States Senator from Georgia. A member of the Republican Party, he previously served as a U.S. Representative ....
  
   (GA)
• Sen. Kirsten E. Gillibrand (NY)
• Sen. Kay Hagan (NC)
• Sen. Johnny Isakson
  Johnny Isakson
  John Hardy "Johnny" Isakson is the junior United States Senator from Georgia and a member of the Republican Party. Previously, he represented in the House....
  
   (GA)
• Sen. John F. Kerry (MA)
• Sen. Frank R. Lautenberg (NJ)
• Sen. Robert Menendez
  Robert Menendez
  Robert "Bob" Menendez is the junior United States Senator from New Jersey and a member of the Democratic Party. In January 2006, he was appointed to fill the U.S. Senate seat vacated by Jon Corzine, who resigned upon being elected Governor of New Jersey. Menendez was elected to his own full...
  
   (NJ)
• Sen. Patty Murray
  Patty Murray
  Patricia Lynn "Patty" Murray is the senior United States Senator from Washington and a member of the Democratic Party. Murray was first elected to the Senate in 1992, becoming Washington's first female senator...
  
   (WA)
• Sen. Jack Reed (RI)
• Sen. Bernard Sanders (VT)
• Sen. Arlen Specter
  Arlen Specter
  Arlen Specter is a former United States Senator from Pennsylvania. Specter is a Democrat, but was a Republican from 1965 until switching to the Democratic Party in 2009...
  
   (PA)
• Sen. Sheldon Whitehouse
  Sheldon Whitehouse
  Sheldon Whitehouse is the junior U.S. Senator from Rhode Island, serving since 2007. He is a member of the Democratic Party...
  
   (RI)
• Sen. Roger F. Wicker (MS)

Grassroots support

An online petition to push for the passage of the SMA Treatment Acceleration Act was developed in 2009 by Bill and Victoria Strong. SMA organizations "Fight SMA" and "Families of SMA," backed by affected families, have also been involved in lobbying efforts.

External links

• http://www.fsma.org/LatestNews/index.cfm?ID=4331&TYPE=1150
• http://www.fightsma.org/
• http://www.fsma.org/FSMACommunity/Legislative/FSMALegislativeAgenda/SMATreatmentAccelerationAct/