My Public Comment On Graham-Cassidy

I don’t usually post on the weekend, but I wanted to make sure to get the word out.  There’s still time – until 9:00 a.m. (eastern) on Monday morning, September 25, 2017 – to submit a public comment in opposition of the Graham-Cassidy bill.  Below is the comment that I sent to the Senate Finance Committee on Friday morning regarding the bill.

If you’d like to submit a comment, email GCHcomments@finance.senate.gov.   

We must fight for the right for healthcare, especially for the most vulnerable among us.

I am one of millions of Americans with a pre-existing condition.  And based on what I’ve read, I could see insurance premiums that would cost me more than I earn in six months. 

Graham-Cassidy would effectively destroy my life and make it worse than just living with multiple pre-existing conditions. 

Our society is built on the idea of the American Dream.  Not only would Graham-Cassidy destroy my life, it would destroy my dreams.  I have a PhD, and yet, I won’t be able to afford food or rent, and definitely won’t be able to afford the medications I need.  If I won’t be able to afford my medication, I won’t physically be able to work. And I know that our government will make it impossible for me to get disability benefits if I can’t work. And if I die, I know the government won’t pay for my funeral. 

So basically, you are throwing the baby out with the bath water.  You are taking a leaking ceiling and rather than fixing the leak, you are tearing down the whole house. Does that make any sense?  Didn’t think so.  And neither does this bill. 

As politicians, you have power.  And with that power, comes responsibility.  So voting for a terrible bill simply because of campaign promises to “repeal and replace”, and following through on those promises at any cost, is an abuse of power and dereliction of duty.  Replacing something good with something that is far worse is simply not an option.  It shouldn’t even be on the table. 

The productivity that this country will lose for all of us who become too sick to work without having the necessary coverage we need to function, will be profound. 

And it profoundly saddens me that to make yourself feel better, you will potentially hurt and/or kill millions of people. 

So please, if you believe in the American Dream, if you believe that America can and should be a positive example for the rest of the world, and if you want to use your power for good, vote no on Graham-Cassidy.  The ACA is not perfect, but Graham-Cassidy is much, much worse. 

I didn’t ask to be sick.  It’s not something I planned on happening at age 22.  And I have been fighting for nearly a decade to live.  Graham-Cassidy calls all of that into question. 

I hope that you will not turn your back on the millions of people that aren’t hurting you by needing healthcare, but will be very hurt by not having it.  

Where is our humanity?  What happened to empathy and compassion?  Please stop and prove that all of these things still exist in our government today.

Too Rich To Be Sick, Or Too Cruel To Be Kind?

There is so much going on in our world today that is simply heartbreaking.  The things that are happening are beyond words.  But one area of my life where I refuse to be silent is where my healthcare is concerned.  And right now, a bunch of rich, white men are trying to take my – and your – healthcare away.  And as far as I can tell, the only real reason why they are doing that is because they can.  

The last time I checked, no one – rich or poor – has emptied their pockets to pay for my healthcare.  The only one who has been bled dry physically, emotionally, or financially, is me.

So please, stop putting forth this argument because it is convincing those in power, whether they should be or not, that healthcare is a commodity, that it will be bought and sold to the person that can pay the highest price.  Except the highest price isn't monetary.  It's life.  And death.  

It's a zero sum game.  Because the rich will win again.  They can buy their way out of almost anything.  I worry now more than ever that what I thought was the most difficult fight of my life, the daily battle of living with chronic illness, didn’t start almost 10 years ago.  It’s starting right now.  It’s starting with convincing those in power that my life is worth living.  That even though I am sick, often in pain, and may have more medical expenses than my “normal,” healthy 32 year old counterparts, my life is valuable nonetheless.  

Let me explain how my life works at the moment.  I take no less than seven pills a day.  On most days, that allows me to function; to wake up, eat breakfast, sometimes take a shower, drive myself to work, work an eight hour day, drive myself home, and make dinner for my boyfriend and I.  But do you know how tenuous that is?  I don’t even have a day grace period.  If I forget to take my medication or run out of my medication, I have one day before I will feel like I got hit by a truck and will barely be able to get out of bed.  Sure, my illnesses are managed, but only by medication and a crack team of doctors.  And because I can afford all that.  Because the moment I can’t, almost 10 years of hard work will have gone completely down the drain.  I will have gone from living life despite illness, to not living at all.  

I didn’t ask for this.  I didn’t ask to part with a large portion of the money I make to go towards medical expenses.  I didn’t ask to literally use all 10 days of my paid time off every year to go to doctor’s appointment after doctor’s appointment, only to take unpaid leave for all the rest.  It’s insulting to suggest that somehow I benefit, or somehow others lose out, because of my healthcare needs.

Then you have rich white boys who think that they can go from rock and roll to politics and they further arguments such as this one – that their pockets are being made thinner because I am sick and they are not.  Someone in my home state of Michigan is vying for a senate seat and this is an argument that they are furthering. That some people are sick and everyone shouldn’t have to pay for it. But isn’t that the whole concept of insurance? You pay into because some day you might need it? 

So basically you’re too rich to be sick? I guess it’s more the case that if you get sick you can afford to pay out of pocket. I can’t. Read my lips: without medication, I...WILL...DIE.  And when that happens, I assume no over-privileged white guy is going to pay for the funeral. 

I think it’s important, though, to acknowledge that there are people out there, celebrities, who are bringing awareness to chronic illness and chronic pain.  However, they have money, too.  When one cancelled her tour,  she was able to do that because she can afford to take time off.  When another got a kidney transplant,  she didn’t have to worry about taking time off for it, or not being able to afford the surgery or the anti-rejection drugs she will need to take for the rest of her life – even if she someday finds herself without insurance.  So when the U.S. Pain Foundation applauds these folks, and states that they prove that “Pain is an Equalizer,”  I call bullshit.  It’s true that just because you’re rich, doesn’t mean that you are immune to pain or illness.  But you certainly don’t deal with it in the same way that someone who has to decide whether to take care of their health or pay their rent does.  They can take the time they need to recover.  Most of the chronically ill people I know cannot.  And that needs to be acknowledged.  

I feel that the current healthcare debate has drawn a line in the sand and made it more apparent who the “haves” and “have nots” are.  And with that comes a profound feeling of being left in dust, of being hung out to dry.  And that no one beyond those in my inner circle care about what happens to me.  That not even my own government cares.  And why should those who will never have to want for anything care?           

What these people fail to realize, is that with this impending decision, we all pay a price.  For me and my chronic peeps, not being able to afford the care we need will mean we are less productive and less able to do the things we want and love to do.  In a lot of cases, it might even mean that we die.  Not having our contributions will diminish us all.  But the rich people that want to turn their backs on the rest of us, a small part of them will die, too, because deep down, they know what they are doing is wrong.  And they simply don’t care.    

What happened to our humanity?  What happened to empathy and compassion?  What happened to helping each other out, out of the goodness of our hearts?  The money you have doesn’t make you a good person.  It’s how you treat others.  It profoundly saddens me that this is what our country has come to.  And I hope that for all of our sakes, we win this fight.  Because if we don’t, we all stand to lose, some of us more than others.  

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[1] http://www.mlive.com/music/index.ssf/2017/09/kid_rocks_entire_senate_speech.html

[2] http://www.npr.org/sections/therecord/2017/09/18/551838441/lady-gaga-reveals-she-has-fibromyalgia-postpones-european-tour-dates

[3] https://www.usatoday.com/story/life/people/2017/09/14/selena-gomez-reveals-she-had-kidney-transplant-as-part-of-lupus-treatment/665143001/

[4] http://nationalpainreport.com/pain-is-an-equalizer-8834395.html

I Lead A Good Life And I’m Not A Burning Down House (Or Shit People Say To People With Pre-Existing Conditions)

First, Senator Pat Toomey (R-Penn) compared people with pre-existing conditions to burning down houses, stating that it’s pointless to insure a house that’s already on fire, and so the same follows that people who are already sick aren’t worth insuring (1).

Then, Representative Mo Brooks (R- Al) said that healthy people are people “who lead good lives” and are those that have “done things the right way” (2).

And you’re probably thinking what the what.  Of all the stupid shit…

So if you’re a sicko like me, I guess that means you’re a burning down house of a bad person. 

The Government is trying to beat us at our own game.  They are trying to make us feel inadequate.  They are trying to reinvigorate feelings that you may have had when you were first diagnosed. 

I know that when I first got sick, I wondered if my life was going to be worth living.  And I wondered what I had done to deserve being sick.  I thought I had been living a life that would keep me from harm.  But I was wrong.  And for someone to suggest that any of us are to blame for our chronic illnesses is disgusting, shortsighted, ill-informed, and just plain wrong. 

What I have come to realize over the last nine years is that, yes, my life is worth living.  And no, there was nothing I did or didn’t do that caused me to get sick.  Other than living in this country, that is.  If you’ve seen previews for “An Inconvenient Sequel,” it makes me wonder if living in a country of privilege like America has caused the uptick in autoimmune diseases.  And all of the other money that our government is cutting is just going to make that worse.  But I digress. 

This is not the country my great grandparents fled to from violence and religious persecution.  This is not the country where I have had dreams of raising my future children.  The past, present, and future hinge on the decisions that our government will make about us and the worthiness of our lives and our place in the fabric of America because we are sick.    

We currently live in a country where those in power think they have the right to say stupid shit about people.  Why?  Because Senator Toomey and Representative Brooks know that most of us with chronic illnesses are out living far better lives than the ones they are.  Minus the money and influence, of course.  

Our government is building a wall, people, but it’s not between America and Mexico.  It’s between the healthy and the sick.  And maybe it’s a wall that has always existed.  I know that I have felt envious of my healthy counterparts since the day I got sick.  But the wall they’re creating is a bigger than that.  And it might ultimately mean a wall between the living and the dead.      

Dear Government,

One day, you’ll get sick.  And while it’s likely that your money will get you farther than my witty banter will get me, it won’t do everything.  One day, your money won’t get you anything but dead, just like we’ll all end up one day. 

So here’s a few tips, because having money and influence doesn’t make you a good person.  Neither does being involved in politics. 

-         Think before you speak.  Now there’s an idea. 

-         Words matter.  The things you say matter.

-         Stop using big words you don’t understand. 

-         Take a refresher course about how insurance actually works since you seem to be missing the point of it.

-         Stop throwing shade at the people who are paying for your unnecessary vacations while those very people struggle to pay for the medications and medical care that keep them alive.   

-         Power and influence don’t matter if you don’t use those powers for good.

-         Having empathy and compassion make you a good person.  Putting yourself in the shoes of someone whose personal experience is completely unlike your own and trying to understand their situation is a helpful life skill.  People will like you.  Your mother will be proud.

I am not in politics.  I don’t desire to be in politics.  But I desire to create change.  I want to make the world a better place.  And I think that’s more than can be said about a lot of the people that seem to be influencing our government right now.

I know the difference between right and wrong.  I know that what these politicians are saying is wrong.  I know that the potential consequences of their actions is wrong.  I know that providing access to quality healthcare for ALL is right.  And I know that leaving out the sickest among us is WRONG WRONG WRONG! 

Yes, I understand that I feel passionate about this because I am a “sick” person.  I am also passionate because this negatively impacts a lot of people I know and love.  But I’m also passionate because I was once a “healthy” person.  And when I became a “sick” person, I learned that the distinction between “healthy” and “sick” is a tenuous one.  We unknowingly teeter on the border between healthy and sick until we are no longer healthy any more.  Then we are sick.  And for some of us, we never become healthy again. 

But that doesn’t mean that we did something wrong or did something to deserve our illnesses.  And it doesn’t mean that we deserve to pay more money – money that we don’t have and can’t afford to pay – for healthcare because we are sick. 

The richest among us are proving that they don’t want to share the wealth or the health.  That they don’t play well with others.

Jimmy Kimmel is brave.  He’s using his powers for good and not evil.  And yet there are those who are pushing back, who are saying that they do not want to pay their money for his sick child (3).

But this is the way insurance is and has always been.  If you’re healthy, you pay for insurance so that if something happens, you won’t be bankrupt and destitute because of it.  And if you are sick, you have insurance so that your life doesn’t completely fall apart.   The reality is, we will all get sick someday.  And when we need it most, we will want insurance to be there so our lives won’t fall apart any more than they already have. 

My today could be some Republican’s tomorrow.  Or anyone’s tomorrow.  No one is immune, literally and figuratively. 

I’m lucky.  I know that I’m privileged in that I can stand on a soap box and don’t have to worry about losing my job.  Because my employer knows I’m sick.  They knew prior to day one.  And I’m lucky that I didn’t fear not getting my job because I am sick.  But I know that, that is a reality for many.

So I want to speak for those who are frustrated, angry, and disgusted but do not feel they can publically voice it.  I am mortally scared that employer-based health insurance will no longer be affordable and that I will lose coverage, and as a result of that and my multiple pre-existing conditions, I won’t be able to afford any insurance at all.  And that will render me without doctors and without treatment that will quite likely and relatively quickly leave me in pretty bad shape.  In unworkable and non-functioning condition.

Premiums for rheumatoid arthritis and other autoimmune diseases could rise to $26,580 per year (4).  That’s one of the highest premiums for any disease that isn’t cancer.  And that’s more than I make in SIX MONTHS PRE-TAX (so I don’t actually take home that much at the end of the day at six months).  So I would literally be working to pay for health insurance.  I wouldn’t be able to afford food or rent or my student loans.  And I probably wouldn’t be able to work at all because it’s unclear what spending all that money would get me, other than insurance, which would literally be a plastic card that I could wave around with my arthritis-ridden fingers. 

So thank you.  Thank you Senator Toomey and Representative Brooks.  Thank you for saying stupid shit about people with pre-existing conditions.  Thank you for giving us a reason to use our voices and fight for rights that we clearly don’t have but clearly deserve. 

(I could have posted this a week ago, but I was going to be traveling and didn’t want to risk the plane being shot down or ending up on the “do not fly” list)

#HealthHasNoParty

#Iamapreexistingcondition

(Photo credit @HugoOC and @TheLizArmy)

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(1)   http://www.phillymag.com/news/2017/01/25/toomey-health-care-preexisting-conditions/

(2)  (http://www.salon.com/2017/05/02/alabama-congressman-people-who-lead-good-lives-dont-have-preexisting-conditions/

(3)  http://www.cnn.com/2017/05/02/entertainment/jimmy-kimmel-baby-surgery/

(4)  http://time.com/money/4769050/ahca-pre-existing-conditions-surcharge/