Celiac Disease and the Affordable Care Act

Let’s talk health care. Right now we are facing a possible repeal (without a replacement) of the Affordable Care Act, which has given over 20 million Americans access to health insurance. This post is meant to be a discussion about what the ACA has done for me and what could possibly happen to the Celiac community if it gets repealed.

As an individual who has been enjoying the benefits of the ACA for years, I will admit that it isn’t perfect. There are things to fix, but, dang it, I am so grateful to have affordable health insurance, I could cry right now. It is because of President Obama and the ACA that I was allowed to stay on my father’s insurance until I was 26 years old – this is when I was diagnosed with Celiac Disease. After six years of symptoms and visiting doctor after doctor, I finally was given the diagnosis that could save my life. This would have cost me SO MUCH MONEY if I had to pay for it all out of pocket. It would have taken everything I had and then some. As I graduated off my father’s insurance and onto my own, I enjoyed being able to return to my doctor for follow up visits, get routine Celiac panels, visit new doctors for conditions linked to my Celiac (yay hypothyroidism!), get the medication I needed for other preexisting conditions, and feel safe knowing that if (god forbid) I got cancer as a result of my gluten-eating during pre-diagnosis years I would have health insurance that would hopefully give me the tools to save my life.

Without the ACA, millions of people may lose their health insurance, including myself. My employers do not offer health insurance, and people with preexisting conditions may not be eligible for health insurance anyway. So what does that mean for the Celiac community? My predictions:

It often takes 6-10 years for someone to get a proper diagnosis. This time may mean tens/hundreds of thousands of dollars worth of doctor visits and possibly getting misdiagnosed (oops, that sounds like a new preexisting condition). Who can afford this? Many people may choose not to go to the doctor at all, resolving that they can live with stomach aches or joint pain, not realizing that a serious autoimmune condition would be the underlying cause. And if someone were diagnosed with, say, arthritis, they may stop their diagnosis quest if that’s all they can afford, again not knowing that they have a disease that could eventually kill them.

Most people with Celiac Disease don’t know they have it, but diagnosis rates are currently on the rise. We have worked so hard to help more individuals and doctors become aware of Celiac Disease – but what happens now? I believe that as a result of a potential ACA repeal, Celiac diagnosis rates will fall. It will become a rich person’s disease. Only those who have insurance though their employer (and don’t have other preexisting conditions – and let’s face it, if you have Celiac Disease, often times there are other things wrong) or people who can afford out-of-pocket the often lengthy diagnosis process will be able to get diagnosed. So what does that mean for everyone undiagnosed? – unnecessary pain, suffering, decreased quality of life, potential to be unable to work/make a living, long term complications such as miscarriages, depression and cancer, and possible premature death.

What does that mean for me and my fellow Celiac peers and friends? If it is repealed will I be able to afford to pay for a follow up endoscopy, blood tests to check my thyroid, necessary medication, and other conditions that might crop up? And what if I get hit by a car?

Access to health care is a matter of life and death. Will I die sooner? Or go bankrupt? Without access to affordable health care that includes preexisting conditions, I’m afraid the road for many of us with autoimmune conditions may be much shorter.

Perhaps there could be a better plan that covers preexisting conditions, has lower deductibles, lower premiums, and allows us to see any doctor – if this plan exists, sign me up! But in all the years of talks and attempts to repeal the ACA, this plan has not come into fruition. If we are looking at a potential repeal within a matter of weeks or days, will this better plan suddenly emerge?

Again, this is a conversation and a safe space to discuss. I’m calling my senators and representatives. I invite others to do the same. This is a handy site for finding representatives: www.whoismyrepresentative.com

I wish you all good health.

One thought on “Celiac Disease and the Affordable Care Act

  1. Pingback: Happy Celiac Awareness Month 2018! | tasty meditation

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