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I have been waiting over 6 months to hear about getting back on infusions for alpha-1 antitrypsin deficiency (AATD). Insurance had denied approval in December 2022 but I ended up getting approved through a different part of my insurance plan. I have noticed an uptick in my symptoms, so it only seemed natural to “look into things,” and I’m so glad I did.

Honestly, I was upset about the repeated denials, but I had slowly given up on everything. That is, until I noticed a change in my condition on my X-rays recently on a routine scan for some chest pain. After that, I realized that part of the reason nothing was happening for me was I was not fighting for it.

I was originally on infusions with the help of Medicaid for emphysema caused by AATD. The deficiency was being augmented by the infusions of that alpha-1 proteinase inhibitor, called Glassia® that some of us patients need to slow down the progression of our disease. I had been getting the medication through Medicaid because I was only able to work 2 part-time jobs.

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However, when I found a full-time job I could actually do, the new insurance would not allow me to have my infusions due to my gene type not being high risk for chronic obstructive pulmonary disease (COPD), but I do have a moderate chance of getting COPD. I knew my lungs were declining, more than anyone.

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I have communication with both the specialty pharmacy I use and the company that makes the drug I use. The major company that manufactures Glassia for me is Takeda Pharmaceuticals. I have a patient advocate with them and letting her help me has been invaluable.

I also have a patient navigator with the pharmacy and although eventually I did get approval, the patient navigator was unable to complete the approval process. She said the amount of medication requested was not allowed, but she didn’t know how to fix it. She was working on it.

She worked on it for over a month. Finally, I called my Takeda patient advocate. Together, we talked to the pharmacy and the insurance company and were able to figure out the problem. Interestingly, the issue ended up being that someone typed in the wrong grams per dose. So, because it was 1000 times the approved dosage for me, it was repeatedly denied.

I don’t know why it took so long to figure this out. This is a reminder to me of the power of a patient to be able to change the course of their treatment, and ultimately, their life.

I am still waiting to get the call that everything has been completely worked out and that I can get the next infusion scheduled. But I feel a lot better knowing we discovered the issue and it’s being addressed.

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According to my patient navigator, my doctor had done all he could do to recommend I be treated. So, when the pharmacy claimed it could not proceed any further, I took charge.

I am the firstborn girl in my family, and I don’t know if this has anything to do with it, but I know how to throw a fit. In one sense, I did call and I told them I wasn’t going to let this go any time soon. It was helpful in this situation to voice my frustration and request that this be dealt with now before more irreversible damage was done to my body.

After talking to them yesterday, I can tell you that everyone in that partcular department of my insurance company knows my name and what is going on. I could hear what was going on when I called to see how everything was going yesterday.

It may sound like I called and chewed the customer representatives out, but I really just told them what was happening. My patient advocate was on the line with me every step and encouraged the representative to figure things out when he repeatedly stated, “I just don’t know what is going wrong here.”

We did not threaten anything, but our little alliance did a lot for me. My refusal to give up really helped me, which I didn’t realize until my advocate pointed that out. She said most patients would have given up by then. She didn’t know the ins and outs of my disease, but seeing the damage that had been done to my lungs recently was enough to keep me going in my fight for medication.