An Open Letter to Tom MacArthur and Congressional Republicans on the Affordable Care Act

Congressman MacArthur,

I was eight when I defecated in my pants while sitting on the floor watching Star Wars.

I was ten when I had my first colonoscopy.

I was eleven when I was diagnosed with Crohn's Disease.

I was twelve when I leaned against the window of my dad's car, on my way from my regular appointment at the Children's Hospital of Philadelphia, and looked at the people around the city and wondered how many of them knew how they were going to die, the way that I did.

I was thirteen when my mother had to start spending a half hour every evening placing a feeding tube into my nose and down my throat so that I wouldn't lose more weight. I was under sixty pounds.

I was fifteen when I was taken into the hospital and they poked a hole in my stomach and installed a plastic tube so that I could get the nutrition that I lacked.  I slept with a machine pumping a supplement that replaced the food that I could not eat into my stomach for five years.

I was eighteen when I was trapped in my college dorm room for two weeks because I was in so much pain that I was not able to get out of my bed.

I was eighteen when I was cut open in an emergency operation and three feet of intestines, so scarred and diseased that food could not pass through, were cut out of my body.

At 27 I've lived with Crohn's Disease for the majority of my life. It has been a life full of severe abdominal pain, weight loss, personal embarrassment, and fatigue so great that most nights after school I was passed out by 7:00. I wasn't able to concentrate on school work, wasn't able to get my homework done, have a social life, or play sports.

I wasn't able to be a kid.

I kept my shirt on for four years because I was so embarrassed by the feeding tube that stuck out of my stomach. Most mornings for twelve years the pain in my stomach was so great that I could not move for twenty minutes. I sat curled up in the shower desperately hoping the warm water would help alleviate the pain.

But I was lucky, Congressman, because I had health insurance and parents who were not struggling to survive. I was able to get the medicine I needed, the treatments I needed, the emergency operations I needed.

But as the end of my time at college came, I was horrified. Why? Because I graduated at 22, and back then, that meant I only had a few more months on my parents' health plan. And my job prospects were bleak at the time, because many in my generation were thrown into an economy destroyed by Republican economic policies. I was in remission after my surgery in 18, but without the five medicines I took at the time, there's a real chance I would become symptomatic again.What was I going to do?

The Affordable Care Act's provisions for pre-existing conditions and extensions for dependents to stay on their parents' health care plans went into effect just when I needed them to. Without it, I don't know where I'd be today.

I wouldn't have been able to give up a year of my life to volunteer in service to an inner-city high school in Los Angeles, because I would have needed to find a job immediately just to make sure I had health benefits. But even then, there was no guarantee I would be covered because I have Crohn's Disease and have had so many colonoscopies, x-rays, CAT scans, and surgical procedures that I could be deemed a liability.

After I finished my year of service, I was struggling to find a job. I was completely out of work for a few months, and then was able to find part-time employment. If I wasn't able to stay on my parents' plan, I would have been without health insurance, despite the fact that I was spending 40 hours a week sending out resumes, going on interviews, and desperately searching for gainful employment.

In 2015 I was a few months away from being booted off my parents' insurance--and I still didn't have a job. I was going to have to go into the marketplace. Without that marketplace I would have had no option...I would have to forego my medicine...because on a part-time salary wherein I made less than $1,000 per paycheck I was never going to be able to afford the nearly $9,000 price of my four (yes, I take one less now than I used to) medicines. But I would not have even been able to use the marketplace if it wasn't for the subsidies mandated by the Affordable Care Act. Without the subsidies that supplemented the marketplace, I would be without insurance. Without insurance, I may very well have ended up back in bed, in severe pain, exhausted, and losing weight rapidly.

I was fortunate again--I found a job in time and was able to get health insurance. And, because the Affordable Care Act mandates it, I was covered despite my preexisting condition. And, because the Affordable Care Act mandates it, preventative screenings are no cost to the consumer, and so when I need to have a colonoscopy (a too frequent occurrence for people with Inflammatory Bowel Disease) I do not have to pay so much as a copay.

Congressman, as you can see, I have benefitted from the Affordable Care Act in many tangible ways. Your party's proposals for repealing and replacing the ACA remove almost all of the benefits that have made insurance tangible and affordable for people like me and people who have not been as fortunate. The mandate for all people to be covered keeps premiums down--if the healthy people are not in the market, then the people like me who rely on insurance to pay for our outrageously priced medication will have even less to spend on things like housing and food.

Without the subsidies, people working part time or underemployed will not be able to afford insurance at all. 43,000 people will die annually if the ACA is repealed and the major benefits like coverage for pre-existing conditions, subsidies, extensions for dependents to stay on their parents' plan, lack of lifetime limits, and the individual mandate are removed. All of these things work together to keep costs down and have led to the lowest uninsured rate in American history.

All of these preventable deaths and the loss of insurance will be on your hands and on your conscience if the ACA is repealed. It is not only morally bankrupt, but it it is fiscally irresponsible. Repeal will lead to a $353 billion increase in the national deficit over ten years. This is forgetting to mention the countless jobs it will cost. Here in South Jersey in District 3, Urgent Cares and new labs like Quest Diagnostic and Labcorp have popped up all over Route 130. Should your constituents lose their healthcare, these jobs will be lost, and Route 130 will be spotted with even more empty strip malls, which will drive more businesses away.

Congressman, I have to assume that you have never had to worry what would happen to you if you were denied your insurance. I have to imagine that when you were thirteen you did not have the horrible sensation of knowing that this disease with which you suffer every day is going to be the same thing that kills you one day. I have to imagine that you never had to worry that you would make a mess of your pants in the middle of class because you could not control your diseased intestines.

I have to imagine that you were always able to imagine a future for yourself. I was not. I never assumed I would be able to work a day in my life. When I was thirteen I just assumed I would be trapped in my home, trapped in a failing body. If I even lived past twenty.

I implore you, Congressman, fight to keep and strengthen the Affordable Care Act. There are issues that need to be resolved and it's not perfect, but it has made life so much better for myself and millions of others. Throwing it all away is going to hurt millions and kill tens of thousands. Can you live with that?

Signed,

Tim Rooney

My Letter From the President

It was a cold night in a cold, empty room. Like many nights in my first year of college, I was by myself in my single room. I was very sick, and though I didn't know it at the time, about to get a whole lot sicker.

But tonight--this night--felt warm. I had voted in my first election, and I had voted for the first African American President. I was excited--and scared. I felt that this was an election that mattered, because it was about change, even though  plenty of people said that this kind of promise was dumb and naive. Barack Obama had no platform, they said, he just threw around nice words and made promises he couldn't keep.

But I heard plenty that was completely different than what came before. It was a call for diversity and inclusion, a call to replace war with diplomacy, and to set aside mistrust of other races and religions. In his acceptance speech that night, this is what President Obama said:

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference. 

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

We are, and always will be, the United States of America.
It's the answer that led those who've been told for so long by so many to be cynical and fearful and doubtful about what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.
It's been a long time coming, but tonight, because of what we did on this date in this election at this defining moment, change has come to America.

I am not, and wasn't then, stupid or naive enough to think every promise would come true, or that any change would be easy...but these are the words and the dreams that defined everything about who I strived to become. Though it is not until I sat down to write this that I truly understood.

Just as my adolescence was inextricably linked to the disastrous policies and presidency of George W Bush, my adulthood has been inextricably tied to the presidency of Barack Obama and the world view that America can be better than it is now-- that America is an unfinished project that calls upon each of us to commit to its deepest values of liberty, diversity, and inclusion.

I went into college in the midst of the earth rattling recession that turned the world on its axis. My prospects were dim. I saw the ongoing wars in Afghanistan and Iraq throw away people's lives and accomplish nothing. I saw anger at Muslims creep into our cultural consciousness. I saw a president ineptly out of touch with the needs of the country's people, ignorant of the disastrous economic policies he and his congress had put forth. I didn't fully grasp it all, but this was the milieu in which I grew up. The challenges felt insurmountable.

Crohn's was an enormous burden then; it felt like it separated me from everyone else. I often felt that my time in college was a waste since there was no way I would be able to  hold down a job with this illness. I didn't believe in much of a future for myself. And with the economy falling apart, and the television reporting that things had not been this bad since World War II, I had even less to look forward to. But my illness has also provided me with a unique perspective and empathy that has served me well and opened my eyes to realities of inequality. My own roadblocks and difficulties have kept me grounded enough to realize that there is nothing in this world that is promised, deserved, or guaranteed. Good person or bad.

When I awoke from my surgery in January of 2009, having just gotten three feet of my small intestine removed, I had the great privilege to spend the next two weeks with a cavalcade of temporary roommates who were admitted and released in a matter of days. There was the guy who suffered from such chronic diarrhea that the room smelled of feces at all times; he spent his entire two days shouting about all that had gone wrong in his life. To be fair, he did seem to have a severe issue, but also, I had just had my stomach cut open and couldn't move. There was another dude who was unhappy with our nurses for not reacting enough to his needs, who moaned and groaned constantly.

My favorite roommate, though, was a fellow who had been taken to the ER because, I think, he had complications with his diabetes. He spent this entire time explaining to people on the phone how horrible his ambulance ride was, that he didn't even want to come to this hospital, but he had to. Everything--from the food, to the great tribulation of receiving his prescriptions--was a personal slight against him. He demanded and deserved only the best and greatest attention at all times. Then he went on and on about how Obama was a sleeper agent for the Muslim Brotherhood, in the pocket of the Saudis, and was planning to overthrow the country.

So that was fun.

I was lying there, the thought slowly dawning on me how fortunate I had been to even be stuck in this bed. I had almost been set home, which may very well have cost me even this very uncomfortable moment.  It had only been a few days since my surgery, and I still had my catheter, I still had an IV inserted into my forearm, wires attached to various places to monitor my vitals, I still could not sit up, but I felt better than I had in years. I could not stop thanking God and the universe and every abstract concept of creation for this unbelievable feeling of... Nothing. I was not in the constant pain and exhaustion that had accompanied my every waking hour for so long. I resolved, then, that there would never be a moment that I would not give thanks, where I would not remember where I once was and never again take for granted the simple pleasure of waking up and not being in pain.

But those two weeks, I learned very quickly that those who did not know what it was like to not have everything at all times could not be thankful for what they did not realize was not there right. I realized that the hope I believed in and voted for, that I was experiencing vividly was virulently opposed by cynicism, selfishness, racism, and classism. Those who have and have always had do not feel for those who have not.

I left that hospital and it still took me a long time to reach my footing and come to grips with this grand epiphany, to even fully appreciate how deeply I felt it. But this healing came at the same time as this new presidency...and I was on fire with that three word mantra: Yes We Can.

I could live a life. I could pull myself together and overcome what had defined everything about who I was. Maybe I did get to have a future--something I never dreamed for myself.

And so I put myself out there. I went on a retreat that gave me the chance to turn the page on that previous chapter in my life--I literally saw those fears and doubts go up in flames. I took my first trip to West Virginia for a weeklong service immersion experience. This was mostly as an opportunity to meet other students and try to find my place in the world--but what I encountered was so much greater.

For the first time I stepped outside of the metropolitan area which was everything I knew. I spoke to people suffering--no, not suffering--enduring and overcoming poverty. I learned about the destructive practices of the coal industry on the environment, individual health, and the local economies. I was aware that the world was not a fair place--I knew that in my own life-- but I saw vividly for the first time the interconnected pattern that weaves every American individual to the other, how our broken societal compacts inordinately burden those who are already disadvantaged.

From then I devoted myself to service; I felt a responsibility to understand more about inequality, to be an advocate, and to help where I could. This culminated in my service with the Jesuit Volunteer Corps, where this blog first began. I was propelled by the president's call to get involved in the world, I was propelled by the responsibility I felt to make the most of my second chance at health.

The Obama presidency coincided with a time in my life where I was, for the first time, getting the chance to discover and define who I was above and beyond a sick kid. It coincided with my first real experience of being healthy. I saw that progress was difficult and obstructed by hate and narrow mindedness, but I also knew that even the smallest victories were worth fighting for--and every day for the first 18 years of my life I had to find those kind of small victories amidst struggle. I had the chance to see a president who fought for those who struggled--who advocated for the poor and the immigrants, the gay and the sick. It inspired me to figure out how I could advocate for what is right--and it challenged me to go out and discover where I fit, how my life fit into the complex pattern of injustice. I faced the hard truths that though I have struggled in life in many ways, I am also gifted --undeservingly -- with many advantages. And with these advantages come responsibilities.

In 2010, the Affordable Care Act passed, guaranteeing coverage for pre-existing conditions and allowing dependents to stay on their parents' healthcare until the age of 26. As someone who lives with a chronic illness, both of these things were such a weight off my shoulder that I nearly came to tears on multiple occasions--when it passed, when it was challenged, and when it was affirmed. The 26 provision proved to be huge for me, given how hard it had been to find a job. And the fear that I could be denied coverage because I am a sick is a fear that has plagued me since I was a teenager. The relief I felt was like finding out I was in remission all over again.

In the early days of 2016, President Obama passed executive orders to increase gun safety measures. It was this, following yet another senseless attack, that inspired me to write to President Obama. I had never written any such letter, and I certainly did not expect the president to read it. I don't know why I wrote it; I guess it had begun to dawn on me that his term was ending and I wanted to say thanks, even if I was shouting into the wind.

I thanked him for his fight to curb gun violence--I told him that my parents were educators, and so was my fiancé--and the NRA and the GOP supposition that we should arm teachers to protect kids horrified and sickened me. I thanked him for working to make our country safer. I also let him know that while I admired so much of what he did, I was disappointed in many of his education policies.

I thanked him for the Affordable Care Act. I told him how much peace of mind it brought me, a young adult who had been without a job for nearly a year, a person who lived with a chronic illness for his whole life. I told him that this legislation was a weight off my shoulder that I did not even know I carried.

I told him that his message of hope and optimism helped inspire me to serve in the Jesuit Volunteer Corps, where I encountered young men who deserved more opportunity, many of whom are the children of immigrants. I told him that I  appreciated his work to provide clemency for thousands of undocumented immigrants and opportunities for DREAMers. In Los Angeles, I also became keenly aware of the importance of representation in media, as I wrote about on this blog, and I recognized how much it meant for many of those students to see a president who liked like them in the office.

Months passed and I totally forgot I had sent that letter. And in September I received a FedEx envelope from the White House. I assumed it was a form letter. It was not.

This letter, maybe actually by Barack Obama, maybe not (I'll choose to believe it is) encapsulates so much about these last 8 years of my life. From that empty room in East Residence Hall on the night of my first election, to Casa Dorothy Kazel the night of Obama's second victory, sitting around the living room TV with my fellow Jesuit Volunteers, to now: months away from the future with the woman I love that I did not dare imagine that cold November night.

I'll hold this letter and treasure it for as long as I live; it is a message from a person that inspired me to dream beyond cynicism, to serve and to advocate, and who fought to provide me my right to be healthy.

For all that you have done for me and for this country: Thanks, Obama.