As a parent you plan to give your children every opportunity to live a happy, healthy life as you spend each day watching them grow and learn. My two year old son Colton was diagnosed with T1D on 8/22/16. A few months later we received a diagnosis from a pediatric specialist that Colton had autism. The T1D diagnosis was a shock with a steep learning curve. The day to day struggle of carb counting, lunch packing, juice drinking and activity monitoring is enough to fatigue even then most devoted parent. On top of the near constant sugar checking, my wife and I were tasked to identify and monitor the signs and symptoms of a non-verbal two year old with autism.
After many sleepless nights fighting lows and many fights with Colton about injections, his endocrinologist agreed pump therapy could help with managing his diabetes much more tolerable. A few concerns and red flags immediately popped up. Colton, for the most part is limited in his ability to alert us when he is facing a spike or a low. Compounding the issue is that without restraining him for a shot or waking him up for a correction in the middle of the night meant he was consistently running dangerously high. The second concern was that he will not tolerate loose clothing, belts, or tubes touching his body. This limited our options drastically and helped us identify the Omnipod as best option for Colton. A short time later we began using the Omnipod and noticed a dramatic difference. We could manage his highs and lows from a distance without fighting a herculean toddler, and more importantly turning Colton into a pin cushion. By using the Omnipod we could issue a correction without an injection and without disturbing the precious moments when Colton is asleep.
We were finally seeing some improvements and stability when a change in insurance provider became a reality. In an effort to circumvent any disruption in Colton’s treatment or supplies I reached out to United HealthCare approximately 90 days prior to open enrollment. On at least three separate occasions I spoke at length with staff rom United HealthCare about Colton’s pump, supplies and coverage. At each instance I was assured that there would be no problems and they would be happy to continue with Colton’s care and cover his Omnipod supplies. Having been assured that coverage was going to be there, a few months later we had new health coverage. As the diabetes management became a better managed routine we contacted our DME supplier to initiate a refill of his pods. A few days went by and no supplies arrived so I reached out to the supplier and I was informed that United Healthcare denied coverage for his pods. I was heartbroken and furious as I was assured multiple times a few short months ago that his pods would be covered.
I reached out to Colton’s endocrinologist and asked that she intervene. She quickly contacted United Healthcare on our behalf and scheduled a peer to peer review with a medical director at United Healthcare. The outcome was infuriating; he has in fact denied the coverage again based on cost effectiveness. This person has no knowledge of Colton, his treatment, his complex health issues, the autism. No, the decision was made solely based on money. This is the day that United Healthcare put a price tag on my son, and in turn lit a fire in the stomach of his dad.
As I lay awake into the morning hours imagining how to overcome this battle with United Healthcare, I began to recall some information we were given upon arrival to the hospital. One of the things was a crash course in resources. One resource we were presented with at the hospital was the Bag of Hope from JDRF. This bag, along with the namesake Hope, contained a plethora of material to help a couple of shocked, exhausted parents navigate through T1D. From education tools to insulin management system resources, JDRF provided a building block that I used to help manage Colton’s new super power. Another of the resources was a mobile app called BeyondType1. The day we left I downloaded the BeyondType1 mobile app hoping that I was not alone so I created an account, introduced myself and begin reviewing many stories of parents with similar concerns. The support and advocacy from other parents and from JDRF and BeyondType1 staff is second to none. I also remembered that 3 days after Colton was diagnosed we were sent home with a list of resources that included contacts from JDRF, Omnipod and several other advocacy groups. I did what any parent filled with rage would do. I contacted every advocacy group I could think of asking for suggestions, advice and support. I received responses from staff at JDRF and Omnipod. Morgan, Alissa and Steve conferenced with me and Alissa reached out to Thom at BeyondType1. A typically private person, I tend to keep family issues to myself, but something about this was different. This was not a joke; this was Colton’s health being put in jeopardy because United Healthcare saw cost before customer. A few tense hours go by and I was contacted by staff at BeyondType1. Through my initial contact with Morgan, I was able to share my story with Thom and Sarah and they really helped create a campaign for Colton on social media that could not be ignored. I continued to work with the wonderful staff at Insulet and JDRF along with BeyondType1 in the coming days to increase the awareness and pressure on United Healthcare.
The next day I contact United Healthcare and let them know I am prepared to do whatever it takes to get them to honor their obligation and cover Colton. During this time social media explodes with #CoverColton and continues to be shared throughout the days on multiple platforms. The staff at BeyondType1, Insulet, and JDRF are networking with staff from United Healthcare on our behalf every day and assuring me that their support of Colton’s case will only grow stronger in the coming days. The next day we received word that United Healthcare had reversed their decision and will be providing coverage for Colton. I am elated and grateful for the support beyond what my simple words can express.
I believe that the advocacy from JDRF, BeyondType1, Insulet Cooks Children’s Hospital and the caring T1D community made the difference in the fight with United Healthcare. I will forever be in awe of the resounding voice the T1D community has and will always promote the advocacy from organization like JDRF and BeyondType1 within the T1D community.
As a parent I am ready to wage war to protect my family. As a member of the T1D community I know that I won’t face the battle alone. Please use your contacts, advocacy groups and partners to help you find strength and solutions in your time of need. We will be here when you need us. NEVER GIVE UP.
About Jacob Porter: Jacob is a motivated advocate for Colton, Type 1 diabetes and Autism. As a parent he will continue to help Colton navigate his way through life as independently as possible. His family resides in Goldthwaite, Texas, a small community that is heavy on community and family but light on resources, more specifically those attached to T1D. He works in business relations in Austin, Texas, for Texas Workforce Commission as an advocate and counselor for persons with disabilities. He has written for agencies and advocacy groups on topics such as diversity, accommodations and the effects disability has in education, community and the workplace. He has a Master’s Degree in Rehabilitation Counseling and Bachelor’s Degree in Psychology.