The Affordable Care Act: A voice for those with pre-existing conditions

Pre-existing conditions and politics…while I consider myself to be well-versed on the first topic, I don’t ever pretend to be an expert on the latter. That being said—in recent days there have been countless headlines about efforts to repeal the Affordable Care Act. Just like anything in life, Americans are divided about the need for universal coverage. Polls largely show that while a majority of people oppose the law, a wide majority oppose repealing it all together. I’m not one to share my political allegiance or get into conversations about politics, but it’s difficult to ignore the outpouring of concern among not only fellow Crohnies, but anyone who lives with a chronic health condition.

It’s one thing to repeal the ACA, it’s another to do away with it without a replacement program in place to make it better. Seventy rallies to defend the law took place over the weekend from Maine to California—this is an issue that impacts the quality of life for millions of Americans.

As a Crohn’s patient of nearly 12 years—medical bills from doctor visits, routine scopes, daily medications, blood tests and hospitalizations are extremely overwhelming. For instance, two injections of Humira (a month supply) is nearly $2,500 (without insurance). Limg_8385uckily for me, I’ve been fortunate to have insurance coverage from my employers through the years and been able to take advantage of some drug-savings cards. As a soon to be mom, and a wife, I never want my health costs to hinder my family, you feel enough guilt as it is battling a chronic condition in the first place. It’s physically, mentally, emotionally and financially exhausting on not just the patient, but also the caretakers.

When I graduated college in 2005, my parents put me on a private insurance plan to cover me as I looked for my first TV job. They got the coverage when I was a “healthy” 21-year-old, two months later I was diagnosed with Crohn’s disease. Timing was everything. I can’t even imagine how difficult it would have been to pay the premiums and cover my initial hospital stays, tests, 22 pills a day, etc… as an unemployed, uninsured, 21-year-old college graduate.

My heart hurts for those who hit a crossroads—deciding to take medication, seek treatment and drown in debt, or go without and let your disease spiral out of control. I came across this story from a woman named Jean:

“What many take for granted, the health of their children, is a constant worry for us. Our daughter has Crohn’s disease, a chronic illness that requires she have Remicade infusions every 8 weeks to stay in remission. At close to $20,000 each, her medical costs are almost $150,000 per year. Without insurance, she can’t afford this. We can’t afford this. Can anyone? Repealing the ACA may work if you have a great job with insurance benefits but what is a college student to do? What is a new graduate to do? What is a person without a full-time job supposed to do? She doesn’t even have a chance at a job when one considers the cost of providing insurance benefits. She can work if she gets medical care, but without it, she will die.”

While on Twitter, I saw a new website called: Faces of the ACA. The website is run by a team of volunteers dedicated to the countless Americans who depend on ACA for survival, it features roughly 100 personal stories. According to a December survey from the Kaiser Family Foundation:

  • 85 percent of the public supports the provision that allows young adults to stay on their parents’ insurance plans until age 26.
  • 83 percent support eliminating out of pocket costs for preventative services.
  • 69 percent favor the provision that bans insurance companies from denying coverage on the basis of pre-existing conditions.

Speaking of pre-existing conditions, the Crohn’s & Colitis Foundation of America (CCFA) recently released the following statement urging Congress to maintain stability in insurance coverage for patients with chronic illnesses:

“For patients living with chronic illnesses like Crohn’s and colitis, healthcare coverage is essential to ensure they receive the care necessary to manage their complicated disease,” said Michael Osso, President & CEO of CCFA. “Our patients experience numerous barriers to care – including difficult utilization management protocols and high cost of care. Repealing the Affordable Care Act without simultaneously enacting a replacement would not only increase the barriers our patients have to combat, but it would leave many in limbo without certainty that they would have the insurance they depend on for critical doctor’s appointments, medications, medical procedures, and much more. If we are to repeal the Affordable Care Act, it must be done so in a way that provides a replacement that will ensure stability in coverage, maintains the basic patient protections enacted by the law, and prohibits insurer discrimination against patients with chronic diseases.”

Undoubtedly this is a very complex issue and there are pros and cons for the current law. Regardless of your stance, I think it’s important to take a moment and think about loved ones, family members and friends—maybe it’s even yourself—this isn’t just a political game, we’re talking about people’s lives and their health.

Think about how scary it would be to know you may not be able to continue medical treatments you need to manage your chronic illness, or perhaps even survive. Think about how stressful it would be if you had to choose between putting food on the table or getting the medicine you need to help you power through a work day. This is the reality for millions of people.

For anyone with Crohn’s…you’ve likely experienced the transformation yourself—from being healthy and not relying on insurance coverage to having a lifelong disease and becoming dependent on insurance to manage your chronic illness. Not only are you burdened with a chronic health condition, but you have to worry about whether you can even afford the drugs that will help manage your pain. Repealing the ACA without a suitable replacement that provides protection for patients with pre-existing conditions is like adding insult to injury.

I know what it feels like to go through your mail and receive multiple medical bills a day, it’s not easy—whether you have insurance or not. It’s an extra burden on your finances and your family. Circumstances and health can change in the blink of an eye; it’s easy to think you’re invincible until you become a statistic with nowhere to turn.

So what can you do amongst all the debate and discourse? Contact your Representative in the U.S. Congress here and your U.S. Senator here and share your story. If you sign up for 2017 health insurance no act of Congress can take that away from you once you’ve signed a contract with your insurance company. Enroll before the January 31 deadline. Get covered today at

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