Advocacy

Advocacy Day2.JPGAdvocacy is an important part of the mission of the Les Turner ALS Foundation. It is also a crucial way to improve the quality of life for those affected by ALS. By uniting in a common cause, we can make a meaningful difference in the lives of those patients and families.

The Foundation participates in advocacy efforts at the local, state and national level. To receive regular updates about issues affecting people with ALS, we suggest signing up for legislative alerts through ALSA's public policy section or the advocacy section of MDA-ALS.

In addition, timely updates, particularly as they pertain to local issues, will be posted on this page. We also share advocacy news via our monthly e-newsletter. Please join our email list if you wish to receive our e-newsletter.

Current Legislative Issues

The Illinois Legislature is currently considering the elimination of the Medicaid Hospice Benefit. While difficult decisions are needed to balance the state budget, this proposal would be counterproductive to a balanced budget, and would increase the financial burden on families affected by ALS. We urge you to take action by contacting your state representatives.

1. Locate your representatives in the Illinois Senate and Illinois House at the State Board of Elections district search page.

2. Contact them via phone, fax or email to urge them to reconsider. If contacting via phone or fax, please contact them at the Springfield office. We suggest using a message similar to the following:

Dear [Name of Representative],

On behalf of the Les Turner ALS Foundation and all of our families affected by ALS, I wish to voice my grave concern regarding the possible elimination of the Medicaid Hospice Benefit. This is a dangerous and under-reviewed cut that would cost the state far more than the current Medicaid Hospice Benefit.
 
With the proposed cuts, costs to the state will actually increase. Eliminating the benefit does not mean that people will stop being diagnosed with ALS; instead they will be forced to seek other, higher cost alternatives, e.g., acute care. Hospice is a proven high quality, lower cost option.

Multiple studies of Medicaid systems around the country have found savings from hospice ranging from $2,300-$10,800 per beneficiary. The majority of ALS patients (PALS) in Illinois are Medicare beneficiaries. The elimination of the Medicaid Hospice Benefit disproportionately affects our minority and low-income PALS.
 
In 1985, Illinois legislated a repeal of the Medicaid Hospice Benefit that was overturned in less than three  months due to the overwhelming evidence of potential cost increases to the Medicaid System. Please do not repeat this mistake again. We urge you to protect Medicaid and the citizens of your districts, including the ALS community, who are the most vulnerable amongst us. Please maintain Hospice as part of the Medicaid Program.

Sincerely,

[Your Name]

If you have any questions, please contact the Foundation office at (847) 679-3311.

Past Legislative Issues

The following are just a few of the accomplishments that have resulted from past advocacy efforts:

  • The Veterans Administration officially established ALS as a service connected disease, meaning that military veterans with ALS now have access to the highest level of VA benefits without having to prove that their disease was caused by their service in the military.
  • The Social Security Administration included ALS on a list of conditions automatically qualified for expedited reviews, shortening review times to an average of just six to eight days.
  • The Centers for Disease Control created a National ALS Registry, enabling better data collection so researchers can look for disease pattern changes over time and try to identify whether there are common risk factors among ALS patients.
  • The Improving Access to Clinical Trials Act was passed, dictating that compensation of up to $2,000 for participating in clinical trials can't be considered income in Social Security Supplemental Income (SSI) and Medicaid determinations. This enables people with ALS to participate in trials without putting their eligibility at risk.
  • For fiscal year 2011, Congress increased funding for the ALS Research Program (ALSRP) at the Department of Defense by $500,000--bringing the total appropriated to $8 million. The funding was included in the budget agreed to by Congress and the President and which was signed into law.

For more information on advocacy, please contact our main office at (847) 679-3311.

Pictured above: Marty Woywod (seated), Jim Woywod, and United States Senator Dick Durbin.