Life by Numbers

Emily Todebush
Jul 25, 2017 · 4 min read

Birthdays, phone numbers, addresses. Our lives are oftentimes summed up by a series of numbers that help tell the story of where we came from and where we’re going. On February 26, 2013, I added another number to my collection: 340, the international diagnostic code for multiple sclerosis. I was 27-years-old.

Emily Todebush speaks at rally and press conference on why the Affordable Care Act works.

Let me back up.

In early October 2012, I was experiencing a very specific pain behind my right eye. The pain was excruciating and hurt every time I moved my eye. Ever wonder how much you actually move your eye in a 10-minute span? Spoiler alert: It’s a lot.

I had started a new job just 60 days earlier and was only covered by a “catastrophic” insurance plan, which meant I could only see a doctor in the ER and my deductible was $10,000. No other doctor’s visits were covered. Not exactly generous, but I was a healthy twenty-something. What could go wrong?

Because I am not rich (reminder: twenty-something!), I had to wait until my new insurance kicked in before I could see a doctor. I spent an agonizing five months dealing with neurological symptoms that evolved from eye pain to total numbness and tingling along the right side of my body to difficulty walking. I would oftentimes lay awake at night thinking how in the world I would get to work if I couldn’t walk reliably. My life was changing in front of me, but I wasn’t in control of any of it.

My experience is no different than anyone else with a pre-existing condition. Whether it’s MS or cancer, the reality is the same; you are completely at the mercy of your insurance provider. That’s what’s so terrifying about restrictive legislation Republicans are putting forward in the American Healthcare Bill and its Senate counterpart, the Better Care Reconciliation Act.

Here’s why it matters to me and everyone else with a pre-existing condition.

Before implementation of the Affordable Care Act (Obamacare), insurance companies were allowed to impose a “lifetime maximum” to your policy. Those lifetime maximums were oftentimes $1,000,000, which is a number big enough that it seemed unlikely you’d ever reach it. Unlikely unless you’ve experienced a serious health episode, that is. The Affordable Care Act outlawed lifetime maximums, but these Republican bills reinstate that lifetime maximum provision.

Emily Todebush speaks at a press conference on how ObamaCare keeps her alive.

Why does that matter?

Take me for example. My health insurance policy is charged more than $100,000 a year for my cost of care. Of that $100,000 a year, $68,500 of that goes to pay for my disease-modifying drug, whose sole purpose is to slow and delay the ability for MS to destroy my central nervous system. But, if you used $100,000 as an annual benchmark, I would exceed my insurance benefits in 10 years, when I will be just 42-years-old.

At that time, my insurance company could drop me. That would force me to look for a new insurance plan. Because I have a pre-existing condition, insurance companies could deny me coverage outright or they would be able to charge me unaffordable insurance premiums, forcing me to go without. Additionally, both Republican bills strip protections for what are considered “essential health benefits,” which means that even IF I was able to obtain insurance, they wouldn’t have to cover any of my doctor’s visits, lab tests, MRIs, or prescription drugs that are critical to my care.

You see, my life is all about numbers. I am now part of an exclusive club; just one of the tens of millions of Americans who could lose their insurance coverage if the Republicans pass their disastrous legislation.

How a country cares for its most vulnerable population says a lot about who we are as a nation, about our character. The healthcare debate has always been about something more than politics. It’s about doing what’s right for the people who don’t have a voice. I choose to speak out about healthcare not to point out how sick I am, but to illustrate how sick I am not, and that is in large part thanks to the Affordable Care Act.

Now is not the time to let up on the pressure. Now is the time to apply MORE pressure! Call your Senator every day to tell them to vote against BCRA or thank them for pledging to vote against it. If you don’t know who your Senator is, click here. Democracy is a verb and it requires all of us to participate. Don’t forget that they work for us.

It’s never been more important to be engaged. I’m not giving up. We’ve got more work to do.

America Votes

America Votes is the coordination hub of the progressive community. We collaborate efforts to advance progressive policies and win elections in key states and advocate to modernize elections and protect every American's right to vote.

Emily Todebush

Written by

Emily Todebush, a healthcare advocate, battles multiple sclerosis. She works in political fundraising and is a development associate at America Votes.

America Votes

America Votes is the coordination hub of the progressive community. We collaborate efforts to advance progressive policies and win elections in key states and advocate to modernize elections and protect every American's right to vote.

Welcome to a place where words matter. On Medium, smart voices and original ideas take center stage - with no ads in sight. Watch
Follow all the topics you care about, and we’ll deliver the best stories for you to your homepage and inbox. Explore
Get unlimited access to the best stories on Medium — and support writers while you’re at it. Just $5/month. Upgrade