On Government, Insurance Companies, and ALS or #NoWhiteFlags

Steve Gleason has done a lot to bring attention to Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease). Please read this letter that he wrote to his congressional delegation. Living with such a debilitating condition is not easy. Government and insurance companies have the ability to make it just a little bit easier. Unfortunately they usually do the exact opposite.

An Open Letter to Louisiana Senators and Congressmen:

Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,

Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.

Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.

While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.

Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.

I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies “empowering”. These new rules from the CMMS will quash the power that technology gives people like me… people who intend to be productive and purposeful.

Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.

Steve Gleason

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One comment

  1. AMEN! Great letter.
    Two years ago I had to fight for eight months to get my power wheelchair approved – appeal after appeal.
    In January my eye-tracking computer crashed and I could not communicate for three weeks. My so-called “Advantage” plan began giving us the run around again, the people my wife talked to said they weren’t sure they even covered communication devices like that. I was desperate and was finally able to borrow an old one from MDA. I gave up on fighting the insurance; a generous friend has offered to pay for it so I ordered one like Steve’s last week.

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