If T1D doesn’t kill me, our healthcare will
Congressional District: PA07
Chronic Pain, Endocrine Disease, Mental Health, Urological Disease
Issues and Challenges
Kristy has encountered: Access to Medicine, Copay Issues, Insurance Issues, Prior Authorization
I was diagnosed with Type 1 Diabetes in 1994, and have faced countless challenges with a long list of healthcare hot topics as a result. Through the years, I’ve realized that the common thread throughout all of these challenges is the fear of not surviving in a broken healthcare system. This fear, which is linked to access to affordable insulin and treatment, has been at the root of so many of our stories. High-deductible health plans, surprise billing, copay issues, and lack of support have been (and continue to be) a constant struggle for so many diabetics.
As a child, my parents steadfastly assumed the roles of caregivers and sacrificed much of their time, energy, and money to set me up for the healthiest life possible. Their hard work could never change the fact that Type 1 Diabetes does not have a cure; it’s a diagnosis that I will never get a break from, and it often comes with subsequent diagnoses (as most autoimmunies know well). My parents knew that there would always be challenges ahead of me, but drilled it into me that as long as I had insurance through my employer, that I would be okay. I learned through them (and the world around me) that my survival was linked to full-time employment and insurance benefits.
Unfortunately, in the 10 years I’ve been dealing with insurance benefits on my own, I’ve realized that insurance is not only unusable with high-deductible plans, but it is often the enemy of care. There have been so many times that I’ve gone to the pharmacy (insured) and been surprised by unethically expensive copays. Insurance does not ensure my survival nor my health. It only ensures that if I get in a big accident or have to have a big procedure that they will (maybe) pay some of it. Insurance companies continually cause trauma to patients trying to survive in a broken health care system.
When I was 25, I was struggling with high blood sugar and inflammation immediately after eating every meal. The ups and downs were taking a toll on me physically. My endocrinologist, (who I have seen since I was very young) suggested that I switch to a new, faster-acting, brand of insulin that may help with my insulin absorption. I was really excited about this for many reasons. Mostly, I was excited because waiting 15+ minutes to eat as a busy, working, adult meant there were a lot more chances that I’d forget to eat and drop dangerously low. It also meant that I would have less spikes in my numbers and therefore less inflammation.
At that point, I was still on my Dad’s insurance. He was paying a large premium for me every month so we had the peace-of-mind that I had coverage. However, his deductible was so high that it felt like we didn’t have insurance at all. So after going through the arduous process of a prior authorization to get this new insulin “approved,” I was given the retail (out of pocket) price. At that point it was around $600 for a month’s worth of pens because I had not yet met our deductible.
That was just the first of innumerable subsequent traumatizing experiences in the retail pharmacy setting where I felt like I didn’t know how to afford what I needed most to survive. Experiencing this over and over again left me feeling alone, hopeless, and like all the work it takes to keep me alive wasn’t worth it. It is a never ending battle dealing with insurance companies when you have to prove to them that you deserve not only to survive, but to take care of yourself and the right treatment plan.
These experiences isolate patients into feeling like they are alone and helpless; they often make us feel like it’s our fault that we’re sick and are being punished. It’s taken me a long time not to blame myself for these experiences and to admit that it’s the system that’s broken - not me.
Patients' barriers to care (and survival) need to be seen and fought for at so many different levels, including lesligation to protect patients. Mostly, insurance companies need to be held accountable for practices that cause trauma, deny our ability to take care of ourselves, and for medical practitioners to do the job they are trained to do: use expertise and evidence based guidelines to provide us with the right treatments at the right times.
My Motivation and Inspiration
My motivation is to let patients know that they are not alone and there are so many of us out there fighting for what's right.