Uncertainty and the ACA


Editor’s Note: The 115th Congress and the Trump Administration has made repealing the Affordable Care Act a top priority. For over 29 million U.S. families, this will be a devastating blow, as protections for those with pre-existing conditions, including diabetes will disappear.

We must tell Congress that in order to repeal the Affordable Care Act, they must ensure those with pre-existing conditions have continuing protections. Without it, federal health care costs could increase due to complications or lack of access to quality medications, devices, and services.

ACT NOW: Find out how to contact your Senators through Diabetes Patient Advocacy Coalition and help us make a difference by donating to Beyond Type 1’s Access Fund.

Fear can be a powerful tool, if you only let it.

Fear is the only word I can use to describe the feelings that engulfed me in the early hours of November 9, 2016. Daylight was still hours away from being able to chase away the fears that came with the election results. So there I was, left alone to ponder what my future would look like. Left to wonder what would my future as a diabetic with other autoimmune disorders would resemble. Left to wonder what would happen to the Affordable Care Act (ACA), a lifeline for so many.

For you see, only nine days earlier, in honor of my 26th birthday, I lost my health insurance. For the first time I was left with no security, no assurance, no guarantees. When I allowed my mind to wander to those thoughts of the future, it appeared — and unfortunately continues to appear — grim for those of us who require assistance from the ACA.

Diabetics are a unique breed. We do not get a free day when it comes to our diabetes. Denying its existence is a recipe for disaster. As people with diabetes, we become hyper aware that each moment counts. We know one hour our sugars can be in perfect range, the next we’re spilling ketones. We are always conscious that yesterday’s cold can be tomorrow’s pneumonia. We are never allowed to forget that each and every reading on a glucose meter requires immediate attention.

To be diabetic and uninsured for one month, one day, even one minute is walking a dangerous tightrope.

At the age of 25.5, on that dangerous precipice of being uninsured, I was offered a second chance to pursue my childhood dream of writing. When the first opportunity to write presented itself, I hesitated, letting my fear steer me so far away that I never thought of it as a career again.

Life doesn’t grant many second chances and this time, I was ready. Now I would no longer let fear dictate my direction — not with my dream so close, so tangible, so irresistibly within reach. I took the internship knowing that the ACA (and the pre-existing condition coverage) would be there, a safety net created especially for millennials like me. A security for those still trying to make their mark in this world, yet unwilling to compromise their paths, plans and dreams.

Despite my sincere appreciation for the ACAs existence, I have had a contentious relationship with it from the moment I picked up the phone to enroll. Yet, one can simultaneously express gratitude but demand change. I know that for the ACA to be truly effective, it requires reform.

So far, I have spent over five hours on the phone with the ACA employees — two hours and ten minutes of that time just on hold. It has required patience, patience I never thought I possessed, especially when their mistake left me ineligible for insurance for two months. My mind has been questioning how I will afford my healthcare until I meet my deductible.

It took me only five days into my ACA coverage to put it to the test. I rang in the New Year with an infection that suddenly took hold of my sinuses and chest. It didn’t take long for it to become clear I needed a doctor’s attention. Now I am left working off my deductible, a task that seems like using a toothpick to chip away at a block of ice. Yet, I get back up and hope the next couple months are some of my better months.

But if they’re unpredictably not, then I know my out-of-pocket expenses won’t be astronomical. It’ll require a serious dip into my savings, a luxury that not many have, but it will be doable. I won’t be confounded by never ending doctor’s bills, so buried under insurmountable debt that I’ve seen drown so many others.

Access to health insurance is not nearly enough — all people should be guaranteed adequate coverage. Our health is not for sale, a partisan game to be played. I should never have to ration my lifeblood, my insulin. I should never be faced with the decision of which medication to forgo for another. I shouldn’t be forced to stop seeing the specialists that help me carry this considerable burden.

The fear I felt the day after the election is still here, but I won’t let it cripple me. My fear reminds me that never again should people be robbed of their right to health insurance because of the genetic hand they’ve been dealt. My fear prompts me to use that info to inform others. Fear can be an agent of change. Combined with the inimitable strength that our journey with diabetes provides us, we can help change the system. 20 million are counting on it.

Read We Stand With You – Our Statement and What you Can Do by Dana Howe.

WRITTEN BY Kristen Whitney Daniels, POSTED 01/30/17, UPDATED 02/14/18

Kristen is a nomadic writer with a side of diabetes. She is currently a Bertelsen intern for the National Catholic Reporter. One of her 2016 highlights was nerding out with NPR’s “All Things Considered” and doing an interview for their “Been There” series. Celebrating 11 years as a diabetic, she’s captained her JDRF “diaBEAT it” team, completed a half-marathon, enjoys making Carmen Sandiego look like a homebody and really digs being an aunt. After graduating with her bachelor’s degree in psychology and political science from Quinnipiac University, she moved to Los Angeles to serve with the St. Joseph Worker and Americorps program. She credits her time working with low-income families and people experiencing homelessness as stirring her passion for social justice.