Today is the anniversary of the ADA and I’ve seen so many posts celebrating the progress society has made. I don’t disagree, and I do appreciate everything this civil right law has done. But today of all days, I cannot celebrate accessibility in the US. Today, the same day I sat in my car crying on the phone to the receptionist of my cardiologist office I don’t want to celebrate something that feels so out of reach.

My blood pressure has never really reached any level of normalcy but the last few months my readings have been getting progressively worse. I go from 99/87 to 152/139 in the bat of an eye. On June 9th I went to see my cardiologist about how on earth I was supposed to handle this. I talked about my fears around going back to on campus classes in the fall, my lack of improvement after two years in physical therapy, and my complete and total frustration. He brought up a drug called Northera and basically told me it could be my miracle. He told me to go home, do research and he’d call me the next day and get started on insurance forms.

After a week of not hearing anything, I crafted an email with questions about the medication. He responded and we decided to give it a try. The prescription was sent to CVS, but they immediately set it to “Insurance Pending” Out of pocket is cost $3210 a month. Which isn’t attainable for me. So I waited. And I waited.

I had a vacation planned with a friend, a road trip to Disney. (This may seem like I’ve lost my train of thought, but it happened while I was waiting to know my Northera fate, and very much is relevant to this whole accessibility thing.) For weeks I worked with my physical therapist specifically with this trip in mind. Focusing on standing exercises, building up my tolerance. I was determined to have a great trip.

I called the hotel a week before arrival and asked if there was a way to get a room close to the lobby/ transportation. I was told that with the little mermaid room it really wasn’t possible. The employee encourage me to google the walk to transportation.

This is what I found…

Then I cried. Then I spent hundreds of dollars to upgrade to a “premium” room so that I wouldn’t have to expend so much energy just to get to the lobby. This was the money that I had budgeted for food on the trip. Furthermore, this was a cost that I couldn’t ask my friend to split, because it wasn’t something that impacted her. In fact, before my disability, this wouldn’t have even been something I thought of.

We arrived at Disney and the first day I got a headache. The second day I had to leave the park early. And the by the third day I couldn’t sit up straight without vomiting. Switching rooms wasn’t enough, the heat was too much, and any amount of exertion made me sick.

My friend was a good sport and drove me home early. That’s how I ended up on the phone with my cardiologist’s office today.

It had been well over a month and I had heard nothing about this drug. I was feeling even more defeated, even more hopeless about my illness, and I was done waiting. So I called and asked.

The receptionist simply said, “You should have been notified, Northera was rejected by your insurance twice and Dr. M has recommended you stay on your current medications.”

To which I had to respond by saying, “Insurance stopped covering those too…”

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