The Ensuring Access to Clinical Trials Act
The Ensuring Access to Clinical Trials Act of 2015 (S 139/HR 209: EACT) was introduced in to U.S. legislators. If passed, this Act would make the Improving Access to Clinical Trials Act of 2009 (IACT) permanent.
IACT has helped to remove financial barriers for individuals who receive Supplemental Security Income (SSI) or Medicaid to participate in clinical trials, receiving the benefit of participation without endangering their eligibility for SSI or Medicaid. Individuals participating in clinical trials can receive up to $2000 in compensation without affecting eligibility for SSI or Medicaid. In turn, the participation of these individuals helps to further research to better understand diagnosis, treatments, and cures for disease, including neuromuscular disease. If EACT is not passed, IACT will expire in October of 2015.
The Ensuring Access to Clinical Trials Act of 2015 (S 139/HR 209) was introduced by Senator Ron Wyden of Oregon on January 8, 2015 and introduced to the House on January 9, 2015. Introduced to the Senate and Congress and referred to committee in the House in January, no further action has been taken at this point according to congress.gov (n.d).
The Muscular Dystrophy Association has urged support of this legislation. By accessing their webpage about this issue (MDA, 2015), and clicking on the “Take Action Now” button, and following the simple instructions, you can contact your legislators about this important piece of legislation.
In 2014, important legislation affecting the neuromuscular disease community in the U.S. was passed by the U.S. House and Senate, and signed into law by the President. Recently passed legislation includes: MD CARE Reauthorization Act (Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education Amendments Act; S. 315/H.R.594); The Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313; and The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417). These Acts were passed in 2014 in part due to the efforts of the neuromuscular diseases community in voicing their support. (You can read more about these Acts in the article linked below.)
As members of the neuromuscular community, it is important to remain informed about legislation such as EACT and to act to make your opinion known regarding any legislation that is important to you. The Muscular Dystrophy Association’s (MDA’s) website Advocacy pages have important information regarding pending legislation and how to contact your legislators.
Resources:
congress.gov, (n.d). H.R.209 - Ensuring Access to clinical Trials Act of 2015. Retrieved on 7/8/15 from https://www.congress.gov/bill/114th-congress/house-bill/209
congress.gov, (n.d.). S.139-Ensuring Access to clinical Trials Act of 2015. Retrieved on 7/8/15 from https://www.congress.gov/bill/114th-congress/senate-bill/139/actions
MDA, (2014). Advocacy. Retrieved on 7/8/15 from https://mda.org/advocacy
MDA, (2015). Get Involved: New Legislation Would Ensure Access to Clinical Trials for People with Neuromuscular Disease. Retrieved on 7/8/15 from https://www.mda.org/advocacy/get-involved
Reijonen, J., (2013). Legislative Advocacy and Neuromuscular Disease. Retrieved on 7/8/15 from https://www.bellaonline.com/articles/art180080.asp
IACT has helped to remove financial barriers for individuals who receive Supplemental Security Income (SSI) or Medicaid to participate in clinical trials, receiving the benefit of participation without endangering their eligibility for SSI or Medicaid. Individuals participating in clinical trials can receive up to $2000 in compensation without affecting eligibility for SSI or Medicaid. In turn, the participation of these individuals helps to further research to better understand diagnosis, treatments, and cures for disease, including neuromuscular disease. If EACT is not passed, IACT will expire in October of 2015.
The Ensuring Access to Clinical Trials Act of 2015 (S 139/HR 209) was introduced by Senator Ron Wyden of Oregon on January 8, 2015 and introduced to the House on January 9, 2015. Introduced to the Senate and Congress and referred to committee in the House in January, no further action has been taken at this point according to congress.gov (n.d).
The Muscular Dystrophy Association has urged support of this legislation. By accessing their webpage about this issue (MDA, 2015), and clicking on the “Take Action Now” button, and following the simple instructions, you can contact your legislators about this important piece of legislation.
In 2014, important legislation affecting the neuromuscular disease community in the U.S. was passed by the U.S. House and Senate, and signed into law by the President. Recently passed legislation includes: MD CARE Reauthorization Act (Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education Amendments Act; S. 315/H.R.594); The Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313; and The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417). These Acts were passed in 2014 in part due to the efforts of the neuromuscular diseases community in voicing their support. (You can read more about these Acts in the article linked below.)
As members of the neuromuscular community, it is important to remain informed about legislation such as EACT and to act to make your opinion known regarding any legislation that is important to you. The Muscular Dystrophy Association’s (MDA’s) website Advocacy pages have important information regarding pending legislation and how to contact your legislators.
Resources:
congress.gov, (n.d). H.R.209 - Ensuring Access to clinical Trials Act of 2015. Retrieved on 7/8/15 from https://www.congress.gov/bill/114th-congress/house-bill/209
congress.gov, (n.d.). S.139-Ensuring Access to clinical Trials Act of 2015. Retrieved on 7/8/15 from https://www.congress.gov/bill/114th-congress/senate-bill/139/actions
MDA, (2014). Advocacy. Retrieved on 7/8/15 from https://mda.org/advocacy
MDA, (2015). Get Involved: New Legislation Would Ensure Access to Clinical Trials for People with Neuromuscular Disease. Retrieved on 7/8/15 from https://www.mda.org/advocacy/get-involved
Reijonen, J., (2013). Legislative Advocacy and Neuromuscular Disease. Retrieved on 7/8/15 from https://www.bellaonline.com/articles/art180080.asp
You Should Also Read:
Learn more about legislative advocacy for neuromuscular disease.
Read about recent U.S. legislation affecting neuromuscular disease.
Find out more about newborn screening.
Related Articles
Editor's Picks Articles
Top Ten Articles
Previous Features
Site Map
Content copyright © 2023 by Jori Reijonen, Ph.D.. All rights reserved.
This content was written by Jori Reijonen, Ph.D.. If you wish to use this content in any manner, you need written permission. Contact Jori Reijonen, Ph.D. for details.
