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.

Anger, And Everything Else.

In 2000, Lex Luthor ran for and won the presidency. Growing up, it seemed like a ridiculous plot. How could a billionaire criminal, an enemy of every American value, win the presidency?

Life, it seems, is like a bad comic book plot.

I'm angry. And a new day goes by and I think tomorrow I won't be so angry. And I get angrier. Because every day that has gone by this last week  I see more people dismissing Donald Trump like this is just any other election. Like people who are upset, or hurt, or scared are overreacting.

I'm angry that there are so many people unwilling to recognize that this election was a win for racism, religious persecution, and hate. I'm furious that good people put the shortsighted promises of a career conman ahead of basic human decency.

This is not a regular election. People aren't sad because their candidate lost. This isn't Mitt Romney. This is not John McCain. This is not about disagreements on economic policy. Donald Trump and his entire cabal represent the worst of American bigotry. Trump opened his campaign with a sweeping declaration of Mexican immigrants as rapists and criminals. He continued with a promise to ban all Muslim immigrants.

Replace "Muslim" with "Jew." Replace "Mexican" with "Black." Does any of that sound familiar? This kind of speech is intolerable. It is cruel. It is unconstitutional. It has whipped a small but despicable group of people in our country into a frenzy, it has empowered white supremacists to spread their message of hate. And not just in words. But through violence.


I'm angry because today, the Ku Klux Klan is happy.

I'm angry because so many people are incapable of empathizing with those minorities that are the target of these hate groups. Just because your rights are not in danger, just because your world may not change, does not mean these hate groups do not exist, and it doesn't mean the inconvenient truth of racism and hate isn't festering just because you're not looking.

Our country was founded on the backs of slaves and murdered indigenous peoples. We as a society have failed to reckon with it, and that makes me mad, too. Any time some small progress is made, we celebrate, clap ourselves on the back, and ignore the deeply-rooted injustice that still goes on. So for a moment, if you are still not realizing just how incendiary and horrible a Trump presidency is, just imagine you're a Mexican mother who fled a town ravaged by drug cartels to save the life of your daughter and son. Imagine seeing the president of this country--the country that you dreamed would save you--tell you that you do not belong here. That your very presence in society is a crime, and that you and your kids are going back to the town you came from, where you very well may die in the crossfire.

This isn't an abstraction. It's the honest to God truth.


Imagine you're gay, and you are already afraid of coming out to your parents, who may not understand the reality of who you are. Imagine that you wake up and find out that your new Vice President thinks that who you love makes you worthy of electro shock therapy. Imagine your Vice President is repulsed at the idea of you having a family, of adopting a child that you know you would love and care for.


Maybe you didn't know that Donald Trump's campaign manager and top choice for cabinet position was a raging anti-semite who published articles with headlines like this:


I'm disappointed that we have not learned lessons from countries like South Africa and Germany, who instead of trying to pretend that they have just moved on from the painful truth of their nations' pasts, forced themselves to confront it. We are not brave enough as a society to do the same.

So no, you're not a racist. You're not a homophobe. You don't hate Muslims. But your acceptance of Donald Trump and Mike Pence and Steve Bannon means that you are willing to let those things go. And don't you see the problem with that? They have no problem with defying civil liberties for the many non-white, non-straight, non-male people in our country. You have the obligation to be angry, too.


I'm so incredibly angry that a human being who bragged about his wealth affording him the privilege of sexually assaulting women, who boasted that he would walk into the dressing rooms of beauty pageants he hosted to spy on the undressed contestants, who constantly body shames and makes women feel bad for their appearance, now gets four years to remind us of how little he values half of our country. I'm disgusted that little girls who lived through this election now have to grow up knowing that a person who thinks and acts this way gets to be the leader of the free world. I'm in shock that now young boys are getting the message that it's okay to treat women like garbage, because they can still get everything they want without consequence.

I'm genuinely scared that the Republican plan to repeal the Affordable Care Act will negatively affect my quality of life. That one day I won't have my insurance anymore. That I won't be able to afford the medicine that has helped to give me a normal life. That if I need another operation some day that might save my life the doctor will look at me and tell me there's nothing we can do. And I'm furious that you are giving them the chance to do it.

I'm angry at the Catholic Church, an institution that I have dedicated the better part of the last five years to. I'm mad that they spread so much fear over a single issue that more than half of American Catholics voted for Trump--a man who defies every value that Catholics claim to uphold. I am angry that there was no condemnation for Donald Trump's unabashed hatred, while there was plenty of condemnation for anyone who dare step out of line when it comes to their pet issues.

But I'm not just mad at Donald Trump, a sexist, racist, narcissistic lying conman, and the Republicans.

I'm mad at the United States and all of our politicians who have ignored the reality of poverty in this nation. I'm mad as hell that America has the worst income inequality of any major developed country. I'm mad that the gap between the rich and poor is worse than at any point since the 20s. I'm furious that 58 percent of all wealth generated since the '08 Wall Street crash has gone to the top one percent. I'm sick that Americans are working longer hours for lower wages, and countless numbers of our fellow citizens are working below the already laughable minimum wage.

Do I sound familiar?

The Democratic Party ignored this reality. They ignored the very valid and very real anger that, ultimately, won Donald Trump the presidency.

I'm angry that the working class can't afford to put food on the table. That jobs are getting shipped overseas and that as manufacturing jobs and jobs in the coal industry have shut down and automated, there has been no investment in the infrastructure and education that could have helped these communities stay afloat.

I'm enraged that the situation has gotten so bad that the working poor throughout this country were so desperate that they let themselves get manipulated into believing that a man who was born into privilege, who blew his first million, who has never wanted for a damn thing in his life, who regularly stiffs his workers, who proudly shipped jobs overseas, who pays less taxes than the hated "illegal immigrants," was going to save them.

Because, let's be honest, we both know the manufacturing jobs aren't coming back.

I'm sad for every immigrant kid and family I got a chance to briefly know in my time in Los Angeles. I'm heartbroken that their struggles are deemed as less important than traditionally white manufacturing hubs. I'm sick about every LGBTQ friend and mentor I've known in my life who now sees in this country a place of rejection and hate.

I am disconsolate that governors and congressman of coastal states said, "Yes, please," to a man who denies climate change--a catastrophic danger that poses very real threat to their constituents' safety and the livelihood of their tourist industries, and thus, the economy of their states. I cannot believe that our politicians deny science and forsake my future, and the future of any children I might have.


I'm mad at myself for doing nothing but smugly thinking that America was "better" than this. That we were smart enough to see through Donald Trump.

I underestimated the real anger, and real hurt that so many in this country feel. I was as blinded by my privileged place in American society as anyone else. And I was blinded to the depth of hatred of minorities and women.

But I refuse to believe this election is a referendum in favor of the worst of America. Yes, the white supremacists had their voices heard. Yes, they got the man they wanted--a puppet who would do and say anything to grovel at their feet just so he could win and stick it to all those people who never gave him his Emmy. But I believe when they realize that Trump doesn't care about them, when they all realize they got conned by a two-bit carnival barker, they'll feel as sick and angry as I do for the thing that they helped give birth to.

So if you are not angry, if you are rejoicing today--just know that I and all the others like me are not going to "get over" this. I am not going to stop being angry.

And we should not stop being angry.

I am not going to stop fighting against hatred and fear and the blatant lies peddled by this national disgrace. I am not going to stop being a voice for the marginalized, who now risk being even moreso. I will be a voice for compassion, and not just for them--but you too.

I'm going to stay angry, and I won't forget that we are all in this together--and that we must find a way to heal all of our gravest national sins: poverty, racism, sexism, and hate in all its forms. If this election has taught me anything, it is that I can not be complacent in the assumption that things will work themselves out on their own.