SMA Treatment Acceleration Act

The SMA Treatment Acceleration Act was a bill originally introduced in 2007 in the United States Congress "to 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, and for other purposes." [1]

Specifically, "The SMA Treatment Acceleration Act":

  1. Provided for federal support for a national clinical trials network for SMA.
  2. Provided for federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA.
  3. Established an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments.
  4. Established a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research.
  5. Required 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. Provided for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public.[2]

History

In 1995, researchers identified the genes responsible for spinal muscular atrophy (SMA): the SMN1 and SMN2 genes, a discovery that has resulted in developing new treatment pathways.

Owing to the advances in understanding of the disease aetiology, the National Institute of Health (NIH) – a US government agency responsible for providing funding towards medical research – identified SMA as the disease closest to treatment out of more than 600 neurological disorders. Nevertheless, even though the disease is the leading genetic cause of death among children under two years of age in the developed world, the level of NIH funding towards treatment discovery has remained extremely low (around 11 million USD annually)[3]

In view of the above, 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.[4]

The Act was reintroduced in the 111th Congress in April 2009 as H.R. 2149 and S. 1158, falling under the responsibility of the United States House Committee on Energy and Commerce, 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, 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.

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, President Barack Obama served as a cosponsor of the first version of the bill. As of February, 2010, 57 House members had signed on as cosponsors and fifteen Senators had initiated or renewed their status as cosponsors. (Congressman Kennedy, who introduced both versions of the bill with Congressman Cantor, announced in February 2010 that he will not seek reelection after his term expires.[5])

All along, patient organizations Fight SMA and Families of SMA, backed by affected families, have been strongly involved in lobbying efforts.

References

  1. ↑ H.R.2149: SMA Treatment Acceleration Act of 2009 – U.S. Congress – OpenCongress
  2. ↑ http://www.gpo.gov/fdsys/pkg/BILLS-110hr3334ih/pdf/BILLS-110hr3334ih.pdf Text of the 2007 bill
  3. ↑ Families of Spinal Muscular Atrophy – Appropriations
  4. ↑ A Letter to the SMA Community on the SMA Treatment Acceleration Act
  5. ↑ Patrick Kennedy won't seek reelection – John Bresnahan and Jonathan Martin – POLITICO.com
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