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