My name is Claire Willett. I am a playwright in Portland, Oregon. Out of respect for your constituents, I am choosing to send this letter via email instead of contacting you by telephone, to leave phone lines free for residents of your own state to contact you – as I am sure they are doing – to share their own stories with you. But because the decision you make on healthcare in America will affect all of us, right now you are my senator too, and as such, I would like to share my story with you.
My mother, Theresa Willett, was a lifelong servant of her community. She devoted her life to her family and to her church. As a board member and volunteer fundraiser, she helped raise money for Catholic nonprofits throughout the State of Oregon. When she died, seventeen priests, an abbot and an archbishop concelebrated her funeral. She was an extraordinary human being.
She was perfectly healthy until something she thought was a pinched nerve in her right arm turned out, in fact, to be amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig’s Disease. It killed her three years later.
I would like to talk to you about how staggeringly expensive it is to die of ALS in America. Mobility assistance and communications technology are two of the most costly forms of medical equipment which health insurance does not always cover. Or, if they do, they cover only the most inexpensive available version. For example, let’s talk about wheelchairs. If you have ALS, it is a matter of literal life-and-death to have access to a wheelchair which provides full spinal support all the way up to your head, and reclines backward at an angle. Why? Because the disease causes your muscles to atrophy. You can’t hold up your own spine. Your shoulders and torso slump forward and your neck muscles cease to be able to support the weight of your head. Without a wheelchair which supports your entire spine at a reclined angle, you will choke to death on your own saliva.
But most insurance providers view those wheelchairs as luxury items, and do not cover them. The wheelchair you get, if you get one at all, is one of those low-budget ones they use to wheel patients around in hospitals. The kind that works fine if you’re temporarily incapacitated, like you’re pregnant or you just broke your leg. They’re not made for the human body to sit in full-time, all day long, and they will literally kill an ALS patient.
Now, the ALS Association is an extraordinary organization, and one of their most vital nationwide programs is a series of equipment lockers, who loan out wheelchairs and other costly equipment to families who can’t afford them, but there is only so much they can do. My family paid full price for not only a wheelchair, but a wheelchair van to transport it, a ramp to get the wheelchair into our house, and a chairlift to get my mother from the first to the second floor, to make it possible for her to spend her remaining few years in the house where she raised her children, instead of moving into a cold, white medical facility to die. That adds up to tens of thousands of dollars of expenses, and we’re still only talking about mobility equipment. One single category of costs associated with this staggeringly expensive disease which can cost one family up to half a million dollars in care.
My father is a software engineer. In 1981 he co-founded a company called Mentor Graphics, which expanded to become a global leader in engineering technology and is one of the State of Oregon’s largest tech companies. By the time my mother was diagnosed in 2005, he had left to start his own company, which he ran from home. He had both money, and time. And not a day goes by where I do not think about what our lives would be like if he hadn’t. We were astonishingly privileged and fortunate. We were able to pay cash for the mobility assistance my mother needed to be able to stay in the house she loved. The vast majority of families living with this disease cannot. I am speaking to you for them, not for myself.
The costs of ALS would astonish anyone who has not had the experience of living with it. I was in my twenties, and my father shielded his children from much of the worst of it. I have no idea how many thousands of dollars we spent. I know there were monthly clinic visits where she saw half a dozen doctors or more. There was medication. There were machines to help with her breathing and suction the saliva out of her mouth when she could no longer swallow. There was a feeding tube to maintain. There was an elaborate computer system with a screen attached to her wheelchair and a sensor on her glasses that allowed her to type on a keyboard and have her words translated into a computer voice, so the woman who used to be the life of every party could still make jokes and teach me how to make the Thanksgiving stuffing and help my youngest brother with his homework and say “I love you”, even though she could barely move her head.
And all of this was in aid of a disease that can’t be cured. This was just to preserve as much of a decent quality of life as possible. To let her be a human being who could do all the little things you take for granted. Get in and out of the house. Ask for a glass of water. Breathe without choking.
We had excellent health insurance, but we almost didn’t. My father was an independent contractor at the time; he hired my sister a few hours a week to help with marketing so that he would have a second person on his payroll. Without her, we would have lost our insurance under a rule that stripped employer-paid coverage from any company with only one employee. If he had lost that, and had to apply as an individual, in the days before the Affordable Care Act there wasn’t a single insurance company that would have covered my mother. Or her children. 10% of ALS cases are hereditary; if Graham-Cassidy passes, nothing could stop an insurance provider from denying me coverage because my mother died.
My father had a great deal of money, very good insurance, four adult children who lived in town and were able to help out regularly to share the burden, a huge church community of support, and a flexible work-from-home job, but still, the pressure was crushing. And we were navigating this situation on the absolute lowest difficulty setting.
Imagine if my father had an hourly-wage job.
Imagine if he had had to add in the cost of in-home health care (another set of massive costs which insurance only partly covers, if at all).
Imagine if he’d had to find the cash to pay outright for every single piece of equipment, instead of only some.
Portland is blessed with an extraordinary ALS Clinic, located at Providence Hospital, where patients make one visit to see every one of their doctors – neurologists, speech pathologists, occupational and physical therapists. Imagine if we lived somewhere that didn’t have those resources. Imagine my father having to carve out the time to drive my mother to monthly or biweekly appointments with as many as eight separate doctors. Add up those co-pays. Add up that gas money. Now imagine it if you couldn’t afford to buy a wheelchair van.
Imagine being diagnosed with this disease if you live in a rural area, miles from the nearest hospital with specialist doctors. Imagine if she had lived alone.
The ALS Association stepped in over and over to help out wherever they could. They are my heroes and my family. Their work saves lives. But even in the best of circumstances, there is a limit to what you can ask nonprofits to do to fill gaps in insurance coverage. And my expectations that the current administration might increase nonprofit funding, instead of decreasing it, are not high.
The moral of this story is that I spent my twenties learning how a medical diagnosis can upend your entire existence in the blink of an eye. We were deeply privileged. We were in a position to afford things others could not. Things without which my mother would have died years earlier. It is crushingly, brutally unfair that that life-saving care was in some cases only accessible to her because her husband was a millionaire. That is the America we had before the Affordable Care Act, and the America we will have again if Graham-Cassidy passes.
You cannot pull yourselves up by your bootstraps with Lou Gehrig’s Disease, Senator. You cannot even hold your bootstraps in your own hand. Every family with this disease deserves the care we got and already not nearly enough have access to it. This bill would make that worse. It should not be a privilege afforded only to the rich to be able to avoid choking to death in a bad wheelchair.
If you have actually read this far, thank you for listening. Please, please hear me when I say this to you: this bill will kill people. You will kill people. Actual, real-life people I know. This is not liberal hysteria; this is a blunt statement of fact from which there is no escaping. Every CBO score, every testimonial from actual experts in the healthcare field backs this up.
I am pleading with you to find and stand fast to your conscience. Please listen to the millions of Americans telling you far, far, far more devastating stories than mine. No ALS patient would be able to obtain coverage if insurers have no obligation to cover preexisting conditions, especially not one so costly. I am writing to you on behalf of the families with ALS who already struggle to afford the most basic care; this bill would strip even that away.
Thank you for listening.