Is Obamacare/The Affordable Care Act perfect? No. Is anything? Also no. When the Affordable Care Act was first implemented I was pretty grumpy. I went from paying $100 a month for a $3,000 deductible, to $130 for a $5,000 deductible. “Unfair!!!” I cried whilst gnashing my teeth.
But it’s so, SO important to realize that REAL ACTUAL LIVES hang in the balance here. This isn’t just about finding a good in-network doctor. This is about, ya know, not dying. Today, Brittany shares her story.
Tell us a bit about yourself!
Hi! My name is Brittany Taylor. I’m a 29-year-old writer currently living in Charleston, S.C. I work with small business owners to craft website copy, blog posts, and bios that dig deep into their stories, values, expertise, and points of view. My job rocks—I get to talk to so many cool people!
When I’m not doing that, I’m carefully managing a fabric and thread addiction. I sew some of my own clothes, I make quilts, and I just got back into embroidery.
For those of us who don’t know, what is ulcerative colitis?
Ulcerative colitis, or UC, is a gastrointestinal disease in the “IBD” family. IBD, or Irritable Bowel Disease, is an umbrella term that includes UC, Crohn’s Disease, and the catch-all that is IBS, or Irritable Bowel Syndrome. IBS is typically what doctor’s call it when they don’t know exactly what you have.
UC, Crohn’s, and IBS are autoimmune diseases. UC affects the colon, or large intestine, and the rectum, and causes inflammation and ulcers. The damage prevents your colon from absorbing nutrients from the food you eat, which leads to malnutrition, anemia, fatigue, and weight loss. The symptoms are particularly shitty: diarrhea, blood in your poo, intestinal cramping, constipation, nausea.
It also leads to a lot of other symptoms that dramatically affect your quality of life. For me, that includes inflammation around my joints, which made it painful to walk, exhaustion from the malnutrition, headaches from the anemia, and anxiety from the bathroom issues.
At my worst point, I weighed 93 pounds (for reference, my target weight is about 125). I was so weak that I had trouble walking up stairs or holding a hair dryer. My vision would start to black out while I was walking to my car, and I would throw up just about anything I ate or drank that wasn’t plain crackers or bread or water.
I took naps in my car for an hour around lunchtime and again when I got home from work. I routinely stopped on the way to work to go to the bathroom. It was a 10-minute drive.
Pro tip: Grocery stores always have public bathrooms and they are almost always cleaner than other public bathrooms.
How did you get it?
The awful part is doctors don’t know what causes UC or other IBDs. A few of my family members have UC and IBS, so I think part of it for me is genetic, but I also started showing symptoms when I got my first job after college and moved to a new city by myself, so I blame stress, too.
What sort of treatments does it require?
When you’re diagnosed with UC, you usually start with anti-inflammatory pills, which take 6 to 10 weeks before you start seeing results. If it’s particularly bad, you’ll get a round of steroids, either as pills or as suppositories, which are pretty similar to enemas. Fun, right?
If you don’t come off the steroids without your symptoms relapsing, you get moved to the next class of meds: immunomodulators. These are pills that suppress your immune system so that your body stops attacking itself. If these babies don’t work, you get moved up to biologics, a higher class of immune system suppressors that you get by infusion (or I do, anyway).
And if biologics don’t work, it’s off to surgery to have part or all of your colon removed.
Biologics are the most expensive, in part, I imagine, because they’re delivered by IV. I get an infusion of Remicade every 8 weeks, and it costs my insurance about $3,500 per treatment. The pharmaceutical company that makes Remicade also has a coverage assistance program, and that covers part of that cost, too. If you take an expensive drug, PLEASE do yourself a favor and see if the company can help you out! A lot of them do.
When I took the anti-inflammatories, I was covered by a crappy employer health plan. I paid $1,050 out of pocket until I reached my $5,000 out-of-pocket maximum every year for about two years.
The steroids were no big deal, but the immunomodulators were mildly pricey. I think I paid around $100 per month for them with the same health insurance coverage I have now.
If you would have had to use private insurance, how much would your premiums have been?
Before the ACA, it might have been impossible for me to get insurance, period. UC is a pre-existing condition that insurance companies don’t like to cover because it tends to require life-long maintenance with pricey drugs and there’s always the possibility of surgery. That goes for health insurance companies like Blue Cross Blue Shield, insurance companies like AFLAC, and life insurance companies, too.
From what I’ve gathered from people who self-insured before Obamacare hit the scene, they were paying $1,000 a month, easy, in premiums, just for themselves.
And how much were your premiums with ACA?
My 2017 premium is about $300 a month. I have a great plan with low deductibles and out-of-pocket maximums. It has increased a bit since 2013, when I first got insurance through the national exchange. Back then, it was right around $220/month.
How are you doing now, health-wise?
I’m about 80 percent normal, thanks for asking!
I’m still treating my ulcerative colitis. Like I mentioned above, I get infusions every 8 weeks. Remicade has been my saving grace. I saw almost immediate results when I went on it, and that’s unusual. My stomach pain stopped, my diarrhea stopped, my constipation stopped. I stopped bleeding, I stopped worrying about where the closest bathroom is.
I have a colonoscopy every two years instead of every year, and at my last check-up with my gastroenterologist, I got the go-ahead to wait a year for my next appointment. I’ve seen this guy every 6 weeks in the past, so this change is crazy to me. I’m living like a pretty normal person who goes out with her friends and exercises.
What’s going to happen now that ACA is being repealed?
Nobody knows, and that’s scary. For people like me, it’s heartening that most lawmakers seem to support the requirement that insurance companies cover pre-existing conditions, but then you get in the whole “access vs. affordability” conversation, and the anxiety sets in again.
My biggest fear is that lawmakers will repeal without a replacement plan ready to go. I’m terrified that congressmen will vote to repeal and then the replacement won’t pass.
What would you like to say to Donald Trump and Paul Ryan?
I would tell them exactly what I’ve told you. In my experience, the best way to change people’s minds about the ACA is to walk them step-by-step through the reality of it. And after I told them about my experience, I’d point to another person and that person would do the same thing.
There’s also a string of curse words I’d be tempted to use, but that probably wouldn’t go over as well.
How can we take action against the repeal?
Talk to your senators and representatives. Talk to them over and over again. Show up in their town halls and offices and make them listen to you. Flood their inboxes and fill up their voice mail and when Paul Ryan puts up a telephone poll, call in, listen to the stupid message, and vote to keep the ACA.
And if you know people who are against the ACA, put on your super calm pants and figure out exactly what their beef with it is. Then change their mind. Tell them a story about how the ACA helped you or a family member or someone you know. Correct the things they say that aren’t true. Most people are compassionate, even if it takes a hammer and chisel to uncover it.
Thank you so much for sharing your story, Brittany. How did ACA affect you guys? For better? For worse?
P.S. If your senator supports the repeal of the Affordable Care Act, tweet this story at them!
P.P.S. Another important read: True Story: I’m a doctor