Fort Worth local Colin Hadley is an ALS Hero and inspiring PALS who advocates for the rights of those living with ALS. Read his letter to his Senator, urging him to consider supporting life changing legislation that could improve the quality of life for many patients:
On October 24, 2014 I was given a death sentence…I was given a diagnosis of ALS for which there is no cure and there are no treatments to stop the disease. It isn’t a matter of IF I and other ALS patients will die, it is inevitably WHEN each of us will die.
That day I thought of things that I was looking forward to later in life that would never occur now, such as walking my daughter down the aisle on her wedding day, or playing with grandkids. I gave myself one day to be sad, mad, and bitter. The next day I said I was going to take advantage of the time I have left to make as many memories as possible with my family.
My family and I adopted a motto that we have lived by each and every day: ‘Don’t Count the Days…Make the Days Count’. We’ve done a great job making the days count with over 25 trips in 4.5 years.
There are 3 reasons why I could make those memories with my family and why I am still alive and able to speak to you today:
- I had the luxury of immediate ACCESS to incredibly expensive insurance that I paid for through COBRA while I waited 5 months to be approved for Social Security Disability Insurance (SSDI)
- I obtained ACCESS to an effective non-invasive ventilator, which is a life support machine that enables me to breathe and speak
- Finally, I gained ACCESS to a respiratory therapist, who is certified and highly specialized in neuromuscular diseases like ALS and able to manage the medical adjustments I need with my non-invasive ventilator
I have accepted that I am going to die, but the brutal fact is I would already be dead today if it weren’t for my non-invasive ventilator and skilled respiratory therapist.
I would not have shared special moments with my family that you cannot put a price tag on:
- Seeing my son Connor run up the stadium stairs after he won his first track meet race to dedicate the race to me and give me his first-place ribbon.
- Hearing the screams of joy when my daughter Maddie found out she had made the cheerleading squad after complete certainty in her mind that she had no chance.
- Or just waking up one more day to be utterly amazed at my wife, Emily, and watch her with thankful awe as she successfully functions as a rock and the glue of our family despite the exhaustive roles as a mother, wife, and caregiver.
I am thankful for these moments and many others that I would not have been present for had I not been given the gift of this non-invasive ventilator and my certified respiratory therapist, Christy.
The tragic fact is that many ALS patients today and those in the future are going to miss out on the ability to make memories like I have if current legislation isn’t changed and proposed legislative items get approved.
- Current legislation requires ALS patients wait 5 months to get access to care coverage through SSDI.
- Proposed legislation dictates that non-invasive ventilation go into competitive bidding, which would be a tragic hit to quality care and quality of life for ALS patients.
- Included in the legislation for a non-invasive ventilation competitive bid is the proposal to include the funding of respiratory therapists that specialize in managing non-invasive ventilation for patients. These individuals are highly specialized in ALS and are essential for the proper management of the machine. They simply cannot go away, as those not certified cannot manage a patient’s breathing.
I plead, beg, and urge you to act to improve the quality of life for ALS patients today and those in the future facing an inevitable death sentence by:
- Supporting the elimination of the 5-month waiting period to gain access to SSDI
- Supporting the removal of competitive bidding for non-invasive ventilators
- Supporting the removal of competitive bidding for respiratory therapists to manage patient’s non-invasive ventilation
Can I count on you to support these crucial initiatives? I thank you for your time and the opportunity to share my story.
Thank you Collin for your inspiring words and for speaking up for those who cannot. Are you interested in ALS Advocacy? Learn more here.