Guest Blog by Maureen T.

​On a cold February morning of 1982 my life changed forever.   I was 8 years old and my father was about to go on a business trip.  He told my mom that he didn’t feel like I was looking well.   My mom took me to the doctor and didn’t see anything obviously wrong with me and we left the office. We put on our coats and hats and started to walk out the door.  That’s when the nurse came running after us – my blood sugar results came back and they were off the charts.

Though I was displaying so many of the symptoms of Juvenile Diabetes such as thirst, weight loss and blurry vision - they were subtle at that point because the disease was caught within weeks of onset. The next week was filled with visits to specialists, education classes, and an overhaul on what the rest of my life will look like.  

I remember my mom sitting on the hallway floor with the phone receiver outstretched from the kitchen crying and telling my dad I now had an autoimmune disease whose origins were a mystery.  I was now a juvenile diabetic (referred now as Type 1 Diabetes).  My pancreas had stopped producing any insulin and that I would have a lifetime of insulin injections to stay alive.  A lifetime.

I did my best to live as normal life as possible.  As with many autoimmune diseases I did develop others as well.  I struggled a lot but I did all the things kids do – I did well in school, I participated in school plays, I went to prom, I attended college. 

It was after college that life with chronic illnesses became difficult.  Prior to the Affordable Care Act (ACA) (passed in 2010 and implemented in 2014), adult kids on their parents plan would be kicked off as soon as they left school.  I truly believe the entire trajectory of my life would have been different if I could have stayed on my parents insurance until I was 26 years old.  I could have found the right career; I could have had the time to find the right business to work in.  Instead it was a desperate scramble to find any job that provided full benefit insurance to someone with a pre-existing condition.

Every decision I had to make as an adult revolved around health insurance. This was a constant stressor of getting to a job that provided any insurance, staying at jobs that were terrible to keep insurance, going without insurance when I had to move states.  A Type 1 diabetic was UNINSURABLE before the ACA. If I was offered any kind of insurance my pre-existing conditions wouldn’t be covered or I would be denied coverage or only be offered a subpar plan at an exorbitant premium rate, with an unattainable deductible and no prescription coverage for the very medications that keep me alive.

Since the ACA, I’ve been able to keep my wonderful job in small business because I can buy an ACA plan on the Marketplace that cannot discriminate against me. A job where I can really help people, a job I’m good at, and a job with my many, many health challenges I can still be a productive contributing worker in society.  Since the ACA I’ve had access to comprehensive medical care and with a disease like Type 1 diabetes - better access and diligent care on an ongoing basis are the keys to being healthy. 

The complications from decades and decades of diabetic wear and tear are overwhelming, expensive, and can be deadly.  The more I’m able to take care of myself now, after almost 40 years of this disease, the better I’m prepared to avoid terrible outcomes like kidney failure or blindness.  When you have a disease that will be with you for the rest of your life - health insurance isn’t about having something in case something bad happens.  Health insurance is assurance in keeping bad things at bay.

The ACA is not without deep flaws and personal sacrifices.  I see it only as a first in a long needed step in being a country that resembles other first world countries.  Premiums have risen year to year with huge jumps, nothing has been done to stop the runaway train of prescription drug prices, and in order to see any real, affordable premiums, deductibles or co-insurance the yearly salary has a very low cap.  Also, Wisconsin chose not to expand its Medicaid coverage as other states have, so there’s a larger chasm between Medicaid coverage and where tax subsidies begin to take effect. Combining incomes with a marriage can put someone with a chronic illness into a position where taking care of oneself is not affordable, because they may no longer qualify for subsidies or with the higher income bracket you see higher premiums and huge deductibles.

Despite all this I'm so grateful for the ACA.  I’m grateful I had a choice. An unpreventable, childhood illness shouldn't have had the roadblocks that it has.  I can only hope now we can take this as our springboard to true healthcare reform so that all citizens in the county can be their best most productive selves.