When I turned eighteen and a couple odd months after, I had an appointment with my CF clinic.

Dr. Warwick asked me if I was on my parent’s plan, how I was getting health insurance, and what do you need?

I said something to the fact that “I was about to get kicked off my parent’s health insurance and not sure what to do next, and I am not sure what I need beyond that.”

He nodded in his usual calm manner. You could almost see the electricity and the sure speed in his brain.

“Do you have a vest?’

“No.”

He nods. “We need to get you a vest.”

At this time, I had a hand-held precursor for the last four years. It allowed me to have more independence from my parents, but the only difficulty is I couldn’t get my back. I technically needed someone to pound on my back. And then there is the margin of error taken by the fact I am human.

My parents tried to get it, but they made too much and then they didn’t have enough money to cover the cost that insurance wouldn’t cover.  They were middle class, literally stuck in the middle. These machines vary in cost between 14-18k. The cost is the same as a small car, no matter what decade you are in.

Dr. Warwick wrote down some key names and places. He wrote down exactly who to speak to and who can help me. It was only the next building over and I actually sat down with the person who would sign me up on the programs I need.

I was put on Minnesota’s equivalent of Medicaid. I then was put on this program called, “Children with Special Health Needs.” This was a Minnesota specific program that covered folks such as myself, sickle cell disease, cerebral palsy, and two other conditions that I cannot remember. Medicaid would pay for 80% of my costs, and the Children’s program paid for the 20%.

I turned eighteen before my senior year in high school. I went to my local community college on my high school PSEO program, the same as my brother. This allowed me to go to college during my senior year in high school.

I rented a room in a townhouse, had a car – it was a 1984 Chrysler. Brown. No bucket seats. It drove fairly nice when it did.

I grossed 18K that first year on my own. There was no way my part-time salary would have covered my insurance costs while I still had air to breathe.

My parents said, or my mother said, Fact: “We aren’t going to help you. You are on your own.” This was in the first couple of months after I turned eighteen. To be fair, maybe they couldn’t help me. The tone seemed spiteful; a lot of anger rolling around in her soul.

This is when I insert Dr. Warwick’s straight forward words regarding my mother, “Some people never change.” He just nodded and looked at me, and then said something to the fact how well I am doing.

So, one of the best days of my life happened shortly thereafter.  The vest landed on my doorstep. I heard a thump, opened the door, and saw it was addressed to me. I picked it up – it was heavy. Ran upstairs with it, tore open the box and put the jacket on and hooked up the plugs and tubes and I was off!

This was the best thing that had ever happened to me in my entire life! I had complete freedom!

And I had complete freedom knowing that my health was getting the care it needed. My worry and anxiety came to a quick halt. I couldn’t believe it. I couldn’t believe I was given this beautiful gift.

I was on the state programs until I graduated x-ray school and got my first real job.  One program was actually cut 3 months prior to graduating, thanks to Governor Pawlenty.  I delayed care for a month and got a bad infection. I was trying to make it to graduation, but my health needed attention.

I needed just $800 more to get fully covered, and that infection kicked that over. That money came right out of my pocket in 2003. I figured, well . . . I made it this far. I made it that far because of these wonderful state programs.

I never had a problem getting my medications on the state programs. I had problems getting the quantities but not the actual medication. There were delays in getting the quantity.

Then – started paying for my own medications, and have had one problem after the next, all the way up to the present day.

I have never understood this logic.

I have an employer-sponsored health insurance program and I pay for my medications; I have problems getting my medications, like losing my mind.

I don’t have an employer-sponsored health insurance program – I don’t pay for my medications and I never have a problem getting my medications.

Shouldn’t it be the other way around?

I am so thankful for Dr. Warwick’s care and guidance throughout all those years.

I am so thankful for my vest and for giving me the best day of my life, and for all the years of life and freedom.

I am so thankful for having these direct experiences and knowing how life can be and should be. 

I am so thankful for the strength I have gained over all these years.

I am also so thankful to live long enough to see the next best days of my life – getting Orkambi, Symdeko, and then Trikafta.

Let me ask you – what would I have done without the states’ programs? Truly, what were my choices?

Keep moving forward.  Keep standing up for the way it should be.

Much love.