Afrezza – One Diabetics Rocky Road to Better Control

In my last post, I talked about what Afrezza is, my Type 1 diabetes background, and what Afrezza has done for me in a very short time.

My trip to using Afrezza was a rocky road, however.

I had done plenty of research on inhaled insulin, other’s experience with Afrezza (and Tresiba, which I now use for my basal insulin, instead of my pump), all the prescribing indications, and the potential side effects.

I decided, due to my insulin resistance and absorption issues, that Afrezza was something I wanted to try. Easy-peasy – just go to the endocrinologist, get a prescription, go to the pharmacy, and pay the $15 co-pay after insurance and the Afrezza discount card coupon.

First problem: my endocrinologist (and others I checked with afterwards) do not like to prescribe it. My endocrinologist’s first reaction was that she only had 2 people ever on it, one “did not like it”, and the other one quit after 2 weeks due to coughing. Upon pushing the subject a bit more, she told me that she does not like it because you inhale it, and the lungs are too sensitive to risk using it.

For the record, I have found no research that supports the lung issues, most people I have spoken to report no decrease in lung capacity, and even the FDA says most people have  little to base such fears on.

She did do a spirometry test on me, and declared that I was ineligible to use Afrezza due to a blockage in my throat.

After “failing,” I did research on the spirometry test and the way she conducted the test with me. The key number is the FVC, which is the amount of air blown out of your lungs in the first second. Considering she told me to “pretend you are blowing out candles on a cake,” I consider her test invalid. I do not know about you, but I tend to not exhale quickly when blowing out birthday candles. I purposefully extend the exhale to blow out more candles (after all, I AM old).

I ended up going to my local FNP who prescribed knowing that I do not have asthma, bronchitis, or lung cancer. She did consult with two MDs, and they both considered it a safe alternative.

Next came my insurance company, EBMS, and their prescription formulary, Navitus. They both said they would not cover it because Afrezza is “too new” and “experimental.”

Looking at GoodRx, I found the local price, and with the $150 Sanofi discount, it would cost me roughly $300 out-of-pocket. (At the time, Sanofi distributed Afrezza for MannKind.) I figured $600 per month was not a lot to try improving my health.

The next problem I ran into was availability at the pharmacy. My prescription is for 30 – 4 unit cartridge, and 60 – 8 unit cartridges. All they had available was the box of 60 – 4 unit cartridges and 30 – 8 unit cartridges. Back to the FNP for another prescription.

In the end, it cost me $154 out-of-pocket, after the Sanofi and GoodRx discounts. A week later, the other box configuration arrived in distribution, and it cost me $127 after discounts. I am willing to spend $281 a month for how well it works for me.

I did buy 2 extra boxes out of my pocket, at a total cost of $581, due to Sanofi handing back distribution to MannKind. I purchased extra because Afrezza was working well for me, and I feared not being able to refill during the transition.

I refilled my prescriptions 4 weeks later, after MannKind regained Afrezza. My total out-of-pocket cost went down to $56 for the two different boxes. MannKind was already keeping their promise to lower the price (at least I tell myself that, and not that Sanofi is trying to clear the pipeline of their stock.)

Even if I have insurance coverage, my co-pay would be $75 for the 3 box monthly supply of Afrezza I need (there is no generic). I pay the same with the way I am getting it, since MannKind still provides the discount, so it really is not a loss for me.

The only disadvantage I have is that I have to hold multiple prescriptions to fill my supply.

Since MannKind has taken over, I have even had contact from Mike Castagna, the new Chief Commercial Officer of MannKind. He has provided personal help in dealing with my insurance. We will see what happens.

I have also received a backup supply of Afrezza from my diabetes educator, who has given me her supply of samples since I am the only patient she has using Afrezza. In her words, “one of two patients in Minnesota using Afrezza.”

Good option for Type 1 diabetics, and well worth traveling the rocky road to get it. It is a great option for Type 1 diabetics.

Disclaimer: I am (now) an investor in MannKind. Any comments on where MannKind may or may not succeed are forward looking, are my own opinion, and represent my faith in Mike Castagna and Mannkind. I am not a professional financial consultant, just a guy who believes in supporting what he believes in. My advice is worth what you paid for it...