Open Letter to Lawmakers: The Human Cost

Dear lawmakers currently attempting to shut down Obamacare,

My name is Kendall Brown. I am a 26-year-old, college graduate with a full-time job. I am the Executive Director of a statewide arts organization in Oklahoma and the organizer of a monthly event in Oklahoma City that is open to the public and provides entertainment to thousands of people each third Friday of the month.

And I am dying, because of the political games you are playing right now.

You see, I was born with Crohn’s Disease. This didn’t happen because I ate unhealthy food, or because I smoked, or because of any of the other reasons we use to victim blame sick people and justify not giving our countrymen adequate health care. I became severely ill beginning in the third grade because I won a genetic lottery that left me with a disease that would quickly drop me to 87 pounds, render me unable to walk at times, and nearly kill me twice.

For the first 26 years of my life, I was lucky enough to have insurance to help foot the bill of my care. Now, don’t get me wrong, it wasn’t easy. I have very clear memories of my mother at the kitchen table, poring over our finances, attempting to find it in the budget to purchase my daily handfuls of pills, at often well over a dollar a pill, even with insurance coverage.

For a brief period in college, following my birthday that year, I was removed from my mother’s insurance. You see, some semesters I was so ill that I could only complete a small amount of hours at a time, meaning I didn’t qualify to remain on her insurance by sheer virtue of my college enrollment. That brief period, in which I could afford nothing but limited student health insurance, left me with thousands of dollars of medical debt I may never be able to fully pay off. Luckily, thanks to the first steps of “Obamacare” I was able to get back on my mother’s insurance until my 26th birthday. Right before my 25th birthday, I had major surgery to remove nearly two feet of my intestine. Without that first bit of the Affordable Care Act, I could not have gotten the surgery. And without the surgery, I would have died.

 

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While pursuing photo journalism during the height of the occupy movements in Texas and Oklahoma, Brown has a show of photos she’d captured during that time debut in 2012 at Mainsite Gallery in Norman.
Photo credit: Studio1409   https://www.facebook.com/studio14ohnine

 

But I lived. And shortly following my surgery, I went on to get hired at the Individual Artists of Oklahoma, where I am the Executive Director. Through my position there, I have been able to offer community programming to thousands of men, women and children in my state over the past year. I don’t tell you this to brag on myself. I tell you this because I truly, fully believe that had I died back in April of 2012, rather than have surgery, my city and my state would be worse off without me.

 

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Brown spent two summers in Kisumu, Kenya as the Founder and Director of an art therapy based program for students affected by the Kenyan post-election violence of 2007. (Editor’s note: I asked Kendall for pictures of times when she was healthy vs sick. Individuals lives are far more than units and numbers, one person has the potential to create a meaningful ripple effect beyond even state and national borders.)

 

Now, for the past year, I have been without insurance to cover the cost of my Crohns-related medical care. I am the only full-time employee of the organization for which I work, meaning I can currently be denied health care coverage for my “pre-existing condition.” And denied I have been. Following my surgery, I was put on Remicade, a form of chemotherapy to manage my Crohn’s Disease. It is not an ideal drug (it comes with many of the side effects you’d associate with “chemotherapy”) nor is it one that will work forever for me. But it works for now, and hopefully will continue to do so until there are more options available to me. But this past March I was turned away from the infusion clinic I attended, as my new health insurance had decided they would not pay for this life-saving medicine for me, and I could not foot the $15,000 per infusion bill. The last six months have been filled with frantic searching for methods in which to receive my infusions. For a temporary period, I was able to receive infusions in the same clinic where our state prisoners receive treatment (and if you want a humbling experience, try getting chemo next to a man with one leg in prison scrubs and handcuffs.) But following a kidney infection, during which I couldn’t receive treatment, I have been unable to get back into the clinic, largely due to budget cuts that leave them with too many patients and not enough time.

 

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I don’t tell you this to make you feel sorry for me, Mr. or Mrs. lawmaker. I tell you this because I am tired of being reduced to a number, a statistic or, even worse, being described as a freeloader that wants to live off of the government health care teat. I tell you this because if you defund Obamacare, or delay it even for one year, as you are debating today, then this will be my last letter to you. I will be dead before my 27th birthday.

If you think that my life, and the lives of thousands of other people like me have no value, then by all means, delay the ACA. But before you do so, I’d like to invite you to hear stories from others like me, or, if you find yourself in the great state of Oklahoma, come meet me. I’d love to show you around and buy you a cup of coffee — and to introduce you to the woman you are killing.

 

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Sincerely,
Kendall Brown

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17 Comments
  1. I want to say things angrily, all I can say is this woman is truly brave. I’m not surprised about the laws involving health care. My entire family has had a run in with the shotty healthcare system in this state. My sister went over 20 years having seizures, and strokes until a doctor outside of this state finally diagnosed her properly. Her brain has massive swelling, she now has brain damage and a large spot that grows and is not treatable. She is 32. My father, as well as myself have almost died because of it. My mother is ill constantly, and has no insurance because of cost, she goes to free clinics where the doctor’s cannot diagnose her, nor do they listen to her questions or help to properly diagnose why she has fatigue, has lost 20 lbs in a few weeks, and has spent the last 4 months with other flu like systems, and other things they cannot explain. Nobody does anything. They pat her on the head and send her on her way. I hope the new healthcare stuff saves lives, and makes the costs go down for those of us that do not have the money to pay for basic healthcare needs. There are so many loopholes that keep many from being able to qualify for medicaid or medicare. It’s over $100 to go to a well woman visit, I haven’t had one in a few years. I am fairly certain I have ovarian cysts, and endometriosis. I hope this time my cysts do not burst like they did when I was a teenager. Sure, are people going to be pissed off? Yeah, they are. You cannot please everyone. I think there is a way to make sure the citizens of this country are cared for. ALL of the citizens, we all deserve the same rights. I definitely feel like we are taking a step in the right direction. Okay, I’m done babbling.

  2. Your both wrong. Now, don’t misunderstand me. My brother has Chron’s. My Wife has endimetriosis. They are both horrible things you have, and I am sorry for both of you. But also what you are both saying is that many should suffer so you don’t have to.

    Across the country, millions of people who are living paycheck to paycheck are going to find that the MUST have insurance, and in almost all 50 states the cost of insurance has increased. Once in a debate Obama (Vs Hillary) said something to the effect of: “Your saying that we should make people who can’t afford health insurance buy health insurace? By that logic, we could solve homelessness by making everyone buy a house.”

    People are going to have to decide if they will buy food for their kids, or insurance. Pay their car payment or buy insurance.

    There are serious problems with our healthcare, I don’t know of a soul that disputes that. The problem is that the ACA, while addressing few of those issues, creates a whole slew of other ones.

    Good luck to you both, and God help us all if the ACA stands.

    • You’re incorrect okie.

      Everyone needs to have health insurance. The people that you say can’t afford to buy it are the ones that are clogging up the emergency rooms and causing those costs to soar and do you think they’ll ever pay anything back? If they have insurance then the hospitals will be covered. It’s a lot like having car insurance. If you hit someone, at least you can cover them up to the cost of their car and even some medical damages. I even get full coverage on my car for about half the price per month as my health insurance through my employer, and my health bills could total in the hundreds of thousands possibly. For just twice my car insurance payment, that is one hell of a deal. I know that there will be plans cheaper than mine for those that make less and don’t have employers to offer plans. I can almost guarantee you these people have cars. Perhaps maybe just not get the next iphone? Don’t get your kids that ipad?

  3. “People are going to have to decide if they will buy food for their kids, or insurance. Pay their car payment or buy insurance.”

    Which is different from the status quo how?

    Note also that insurance means regular care means better overall health and fewer ER visits means significantly lower overall healthcare costs means lower burden on taxpayers

    And the penalty for not having insurance is pretty low, which, coupled with the preexisting condition provisions of the ACA means that somebody who doesn’t have insurance yet gets a long-term illness will be able to then purchase insurance and maybe avoid complete and inevitable financial ruin and also probably /death/

  4. Kendall, what a jewel you are. A treasure, really. Much love to you and hope that will you make it far beyond 27. Thank you for being honest and brave. I had no idea you battled this disease, which is a testimony to your love and grace. Respectfully, jennifer

  5. Please Update this story. I am anxious to know if she got the coverage she needs since sign up for the ACA began on October 1st. I am hoping she gets better.

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  9. I am definitely tired of the economic Darwinism that Republicans have imposed on this country…we need to take care of our own here in the richest country in the world. Healthcare needs fixed–people like Kendall Brown, who have jobs, need to have health coverage. My heart breaks for this woman; I have tried to find out how to contact her, in order to ask if she has heard of a drug recently approved for Crohn’s disease. It’s called Low Dose Naltrexone, and the FDA just put their stamp of approval on it–it’s fairly cheap, even if one is uninsured. It sends the immune system into overdrive; I am taking it (newly acquired the prescription) to prevent breast cancer from returning. I hope that Ms. Brown explores obtaining a prescription for this, even if the right-wing freak parade were not blocking Obamacare.

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