Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease is a rare group of neurological diseases that affect the nervous system, breaking down nerve cells, weakening muscles, and impacting voluntary muscle movement and overall physical function. The disease itself is tough enough but then imagine not being able to get the care you need, when you need it most, from the insurance company you paid to provide it for you.
This is Ady Barkan's life—and it's the reason he posted this on his Twitter feed:
Can you believe it? My insurance company, @healthnet, did it again!!!— Ady Barkan (@AdyBarkan) February 8, 2018
Two weeks after denying me a ventilator because it was "experimental," they denied me access to the brand new FDA-approved ALS drug.
So I paid them a visit. It was totally mind-blowing. https://t.co/QeobIeWwGi
Barkan, who is terminally ill and by his own admission only has 2 or 3 more years left to live, says he was denied a ventilator to help him sleep at night by his insurer (Health Net) because they deemed it "experimental." Two weeks later, Barkan says Health Net denied him access to a newly FDA-approved ALS drug.
Understandably frustrated, Barkan, a progressive activist with the Center for Popular Democracy where he works as Director of Local Progress/Director of Fed Up, took some friends for support and a camera and went directly to Health Net for answers as to why his claims were denied.
What he got was not answers but just more denials—this time to his question, "Why?"
Many on Twitter agreed with Barkan's points:
Yes to all this, BUT, we shouldn’t have to mobilize an army to get the healthcare services we pay for with our premiums, copays and deductibles. And what about the people who aren’t able to rally public support? How many people did @Healthcare deny ventilators who died waiting?— AllisonMY (@AllisonMY) February 8, 2018
Too many. This all shouldn't have to he done but unfortunately it does. The entire health industry changed when Nixon passed in 1973 the Health Maintenance Act which made industry for profit— Chet A Blum (@chetablum) February 8, 2018
If this story sounds familiar, it's because when Barkan was initially denied his ventilator, he took his complaints to the good people of Twitter and soon found support in droves. In fact, Barkan reported that his tweet was retweeted over 11,000 times before HealthNet responded the next day and offered to go ahead and pay for his physician prescribed Trilogy breathing assistance machine.
But then, just two weeks later, they denied him a life-saving ALS drug. So Barkan took to Twitter again, this time to rally his 50k+ followers and to shine a light not only on his particular case but also for all those who may be having their care denied in this country and who may have no recourse or platform to get their voices heard.
Hopefully Health Net will do the right thing—not only in this case for Barkan but in reevaluating their claim payment and denial process, to ensure that people that need care get the care they paid for—without delay.