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Not doing well...

Tuesday, June 30, 2020

This week for the Aspire & Inspire team we were asked to blog about the first day of summer or our sleeping habits since that was our focus for this month's buddy support group challenge or to blog about a topic near and dear to our hearts. I have chosen the last option.

As most of you know, I have a rare autoimmune disease. This disease was caused by a brain tumor that was removed when I was 9. I am on many lifetime medications. One of those medications is growth hormone. You may not realize that even as an adult your body makes growth hormone even though your growth plates are closed, meaning you are not able to grow any taller. Growth hormone is critical for bone density, how much fat you carry around your waist, HDL and LDL cholesterol levels as well as critical thinking and many other things.

As a child, when the drug was first made, it was experimental and they had to put me through a bunch of tests over a week's time to see if I met the criteria for being treated with this experimental drug. I met the criteria and took it for many years while I was growing, thanks to the drug. We had to travel up to Denver to the Children's hospital every 3 months so they could see how much I had grown, ask me and my mom a ton of questions and evaluate my overall health. Then they would send us home with a 3 months supply of growth hormone. When I got to be about 18 years old, I was tired of taking the shots every day and I wasn't growing much anymore, so I decided that I didn't want to take the shots anymore. Fast forward 7 or so years later, the doctor I had here in town felt like I should go back on the shots and said that I would feel better if I did. When I was growing up and taking the shots we had to draw up sterile water out of one vial and inject it into another vial filled with the powdered growth hormone. Each vial with the liquid growth hormone lasted approximately 1 week, if I remember correctly. Then my mom would inject me with the growth hormone. When I started taking the growth hormone as an adult, one of the manufacturer's made it to where the sterile water and powdered growth hormone was all in one syringe. All you had to do was twist the plunger and it would mix the two together and then I would inject it myself into the abdomen or thigh area. Also, as a kid, they thought the medicine had to go into the muscle but when I started taking it again as an adult they had come to realize that it just had to go under the skin, therefore it was less painful.

I've been taking growth hormone as an adult for at least 25 years. Until recently, I've always been able to get the growth hormone. I've had to jump through hoops to get the insurance to pay for it. It's a specialty medicine that not many people take and it's VERY expensive. Before Obamacare, they charge thousands of dollars for just a month's supply and my copay was something like $35. Thankfully, after proving to my insurance that I did really need the medication they would pay for it. The copay now is a tenth of that. However, recently, I'm having troubles getting this medication. At first I thought it was due to the Pandemic. After doing research though, I've found out that this has been going on for other medications since 2010. A friend of mine from high school has been having a hard time getting her anxiety medication. Thankfully, none of my other medications has been difficult to get.

Until this pandemic hit I did not realize that 99% of all of the drugs we all take are made overseas. I suppose, it's good that we all realize this in a way because now we can try to get our senators and congressmen to try to bring drug manufacturing back to the U.S. GOP lawmakers have unveiled a ‘Beat China’ bill to increase US drug manufacturing here in the U.S. China is the second-largest exporter of drugs to the US behind Canada, and the Communist country produces 90 percent of America’s antibiotics. Meanwhile, US imports of pharmaceuticals from China increased 75 percent from 2010 to 2018. I hope the bill passes because it's ridiculous for our drugs to be made overseas.

Meanwhile, I can't get a refill of my prescription until the end of August (maybe). I'm trying to get my doctor to send a new prescription to my pharmacy. There are many other manufacturers of the same medication and there doesn't seem to be a shortage of them like there is of the drug I'm taking from Pfizer. Hopefully, because of the shortage, my insurance won't make me deal with a bunch of red tape again. I was trying to ration what I have left of the drug by taking just half the amount. Now, I'm not feeling that well. Yesterday I went on a bike ride with my husband and a friend of ours. It felt so incredibly difficult even though we've taken that same path multiple times. SIGH, keep your fingers crossed that I can get my medicine soon.
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