Tag: ALS

The Financial Cost of ALS

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by Rachel Doboga

My mother taught me it’s not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it’s ALS Awareness Month I want to make clear the monetary cost of the monster inside me.

ALS is often called “the bankruptcy disease,” and with good reason. The finances behind maintaining a decent quality of life are devastating at $250,000 a year. I have survived 8 years next month. Do the math. That’s $2 million.

This is where Medicaid and Medicare step in. I also believe I could not have lived this long without three very lucky factors.

First, I bought into private long-term disability insurance at age 24. This was through my first teaching job right out of grad school. One of my colleagues thought I was wasting my money and let me know. “You could go to the movies with that money!” However, my parents drilled into me “Better safe than sorry!” so my husband Evan and I let Hollywood pass us by.

Second, when we moved so I could be treated at a world-class clinic, we just happened to move into a state with amazing programs for people with disabilities. For example, a housing program gives interest-free loans up to $50k for down payments for first-time disabled home buyers with 10 years to pay it off.

Third, much to my shame, we rely heavily on the generosity of our families. We could never thank them enough for their support. This is hard for me to accept because I have always prided myself on being independent. I got my first job at 15 as soon as it was legal to work and before that I was a companion to a girl with autism.

For my first job, I worked at a cinema cafe, but I couldn’t get anything right. They tried me as a waitress, but I kept dropping things. Then they put me in the kitchen, but I kept messing up all the recipes except the fancy salads.

However, I was committed to working and, oddly enough, my boss was committed to keeping me. I was so friendly and sweet that he didn’t want to fire me so he made up a position for me. I was hostess, and my job was to vacuum the lobby and clean the toilets. My grandma was horrified but my parents were proud of me because I stuck with it to earn money to travel one day. At $7 / hour, I watched my savings account and independence grow. I eventually used the money to go to Russia where I met the love of my life. Relying so heavily on others makes me feel awful and ashamed.

Rejoice, for Yesterday a Miracle Happened!

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Photo by Pixabay on Pexels.com

When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down.

“What happened? What’s going on, honey?”

I could hear the mounting panic in his voice, but I was crying too hard to type my answer – that these were tears of joy because the FDA had made the right decision and approved Tofersen, a miracle drug for people with SOD1 ALS and familial ALS. Thank God, Goddess, and Jesus Christ I don’t have either of those. I’m very, very lucky. Still I am overjoyed! I know one family who lost 33 people to ALS. They cut through generations and you’re almost guaranteed to get it.

Evan wiped my tears so I could type. “I’m so happy! Tofersen just got accelerated approval from the FDA. It’s almost like a cure for familial ALS! Everyone has been been campaigning so hard for this on Twitter. It’s a dream come true!”

I feel bad for not including him in my passion over the past few weeks, but we have been consumed by our efforts to put together a fundraiser for our dog Pickle who desperately needs veterinary care.

I go on and on. “One man was on life support and now he’s ice skating with his daughter! And another woman’s ALS clinic score hasn’t changed in 2.5 years! Mine went down every 3 months until they stopped measuring. She cooks, does laundry, does everything she shouldn’t be able to do!”

Evan raises his eyebrows, speechless.

“The FDA approving Tofersen is a huge deal for the whole ALS community because it’s the FDA recognizing a biomarker for ALS. Who knows where that could lead?! This is the 3rd ALS treatment to be approved in 6 years. Things are really ramping up! I’m not eligible for any of them because I have sporadic ALS and I’m on a ventilator, but I’m still absolutely thrilled for the rest of my community!

“I’m proud of you, honey. You contributed to this.”

“Barely. Just a few tweets and reading a lot.”

“That’s still something. I love you.”

I’m suddenly very tired. All the crying and the roller-coaster of emotion wore me out. I have a feeling this is just the first wave of joy and tears today. Evan closes the curtains and peaceful sleep takes over my Tofersen dream come true.

A big shout out to the pALS who participated in clinical trials, and to the ALS Association, which has been investing in the antisense technology Tofersen relies on for decades!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com