The struggle of living with a rare disease and dealing with insurance issues was in the spotlight on national television.
During Tuesday night’s 2020 Democratic debate for the president, Senator Elizabeth Warren of Massachusetts referenced ALS patient and advocate Ady Barkan, who according to Warren has to beg his insurance company and others to pay the staggering healthcare costs he faces every month to keep himself alive.
She conjured Ady’s name as part of her pitch for why she thinks the country’s healthcare system needs to be fixed.
What is ALS?
Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease) is a progressive, neurological disease that kills nerve cells in the brain stem, spinal cord and brain. Consequentially, muscles eventually weaken, causing loss of voluntary movement and control. ALS is typically fatal because patients lose the ability to breathe since muscles in the chest are wasted away.
ALS has two types: sporadic and familial, the former being the most common form at 90-95% of cases. Familial is considered to be inherited. ALS occurs in approximately 3.9 per 100,000 people in the United States. All races and ethnicities are affected, though ALS is more prevalent in white males aged 60-69. Men are affected more than women.
‘This Isn’t Funny’
Not only was it compelling to conjure up Ady’s name, considering he has been public about his struggle with ALS — but the issue got even more attention because of an innocent audience miscommunication.
It started early, when Senator Warren answered a question about healthcare.
“I want to have a chance to tell the story about my friend Ady Barkan. Ady is 35 years old…he has ALS and it’s killing him. Ady has health insurance – good health insurance…and it’s not nearly enough.”
When Senator Warren was cut off because her time expired, she wasted no time reclaiming her time in the next question and pivoting back to talking about Ady.
“So giant corporations and billionaires are going to pay more. Middle-class families are going to pay less out-of-pocket for their health care. But I’d like to finish talking about Ady,” she said, to the sound of some laughter from the audience, presumably tickled by Senator Warren’s doggedness.
But the senator was not amused.
“This isn’t funny,” she interjected, wanting to finish telling Ady’s story. “This is somebody who has health insurance and is dying. Every month he has about $9,000 in medical bills that his insurance company won’t cover. His wife Rachel is on the phone for hours and hours and hours begging the insurance company please cover what the doctors say he needs. He talks about what it’s like to go online with thousands of other people to beg friends, family, and strangers for money so he can cover his medical expenses. The basic profit model of an insurance company is taking as much money as you can in premiums and payout as little as possible in health care coverage. That is not working for Americans.”
Whoever you support — left, right, center — Senator Warren’s anecdote about this young ALS patient rings true; from the stress any rare disease can bring on families, to the utter hell it can be to deal with insurance issues.
Whoever your candidate is this election season, make sure to hold her or his feet to the fire when it comes to rare disease and healthcare policy.