On Monday 3 July 2017 my life was deeply impacted. I was at the office and a TV screen in the waiting room was promoting Afrezza, an Inhalable Insulin. I was intrigued because the last time I heard about Inhalable insulin was years ago and I remember a doctor telling me it was removed from the market because it was giving people lung cancer. I did further research and found out that it was only smokers who were being affected, but they removed it from the market anyway. As a non-smoker, I was disappointed, but hoped that they would soon come out with something similar or better.
This ad, I assumed, was about to drop the big hurt. For a type 1 diabetic that is when they say “…Is not approved for Type 1 diabetes and is…” but to my joyous surprise the commercial said “Is approved for Type 1 and Type 2 Diabetes.” My heart almost jumped out of my chest. I went and consulted with one of the doctors at my office and it was confirmed that it had been on the market for a couple of years now. I got on my phone and called my PCP to schedule an appointment.
So Afrezza Inhalable Insulin is a fast acting insulin for Diabetics. This is the insulin I need before each meal and sometimes large snacks. Before this, I was taking at least 3 shots during the day (one before each meal) and at night I was taking my long-lasting insulin(it helps keep me balanced for 24 hours). So this would reduce my injections from 4 each day, to 1. This also means that I can take my insulin anywhere I want and not have to sneak off to the bathroom to drop my pants or pull up my shirt.
That evening I went home and studied the Afrezza website meticulously. The threat to smokers was listed very clearly, and I had to keep reminding myself that I don’t smoke. I watched the demo video about a dozen times and then made the call to my insurance company. I have United Healthcare via Oxford through work. I spoke to a woman on the phone and just asked if the inhalable insulin would be covered and how much it would cost me. She informed me that it would be covered through my insurance and that it would cost me about the same, if not less than my regular insulin pens. I thanked her profusely and went to bed elated.
Sunday 9 July 2017, my doctor’s appointment was scheduled for 15:45. I was so excited and nervous. I go to see her and she tells me that she can’t prescribe it because she doesn’t know enough about the medication and that she recommends that I go see an endocrinologist. Over the years I have had a few handfuls of endocrinologist, some have been absolutely horrible, one had been ok. That one, who was ok, was the doctor who changed me from using Syringes and Vials of insulin to the Pens. Pens didn’t have to be refrigerated once used and that meant that I didn’t have to carry ice packs with me everywhere I went or have to keep insulin at my office, and other places I visited regularly. I digress. So my doctor gave me a referral to an endocrinologist, but he couldn’t see me for 2 months. There was no way in hell I was going to wait another 2 months, so I got on the Afrezza website and found an endocrinologist just 2 blocks from my office who could see me in 2 days..
11 July 2017. I walked in to the Endocrinologist’s office smiling from ear to ear. This was the place where my life could dramatically change. I was so nervous sitting in the waiting room. As my office is located in Chinatown, I wasn’t too surprised at being the only white person in the room, but everyone in there looked at me as though I was a Martian. It could be because I was at a Chinese doctors office, or it could have been that my smile was alarming. I was finally called back. I met with a medical assistant first who went over all the paperwork with me and then told me the provider would be right in.
I sat there waiting for the provider for about 10 minutes. I noticed another white male walked in and to one of the back rooms, but he had 3 large bags of Popeye’s chicken with him. I laughed internally because one might expect healthier lunches to be had at an endocrinologist office. Finally the doctor came in. I explained to her how I have been a type 1 diabetic for most of my life, how I sometimes miss shots because I am at work and its difficult to excuse myself to a private room to inject the insulin, etc etc. She said that from my blood work and everything she and I have discussed, I would be a perfect candidate for Afrezza. Although I wanted to cry out of ecstasy, I held back. She told me that an Afrezza representative was actually there that day and I could meet with him directly. The white man who had brought the chicken was the rep. He explained to me all of the fine details of how the inhaler worked and how I could best use it. This was a dream come true. Then the doctor came back in and gave me a month supply of the Afrezza to take home. She also wrote me a prescription to take to my pharmacy. I couldn’t start using it that day because I still had insulin left in my Humalog Pen, but it would run out soon enough and then my life would be changed.
15 July 2017. I woke up, tested my blood sugar, prepared my breakfast and started the Inhalable Insulin. It was exhilarating. Mostly psychosomatic I am sure, but wow. I didn’t have to get a new needle tip for my pen, I didn’t have to measure out the dosage, I didn’t have to find a spot that wasn’t bruised, I didn’t need rubbing alcohol and I didn’t have to stick myself. I took the small cartridge out of the refrigerator 10 minutes before use. I put the cartridge in the inhaler, and exhaled then inhaled my insulin. This is what I have been waiting for all of my life. This was every diabetic should be doing so that don’t have to live with the burden of shots. I was too excited for words. I had to call my family, call my friends, post about it on Facebook and Instagram. In a world with so much horrible sadness, a small sliver of light had shone through and made life so much better.
17 July 2017. Then United Healthcare decided to take away my happiness and tell me they know what’s best for me. I first received a letter saying that “…United Healthcare Services inc on behalf of Oxford is unable to approve the coverage request for Afrezza…”. As I read the letter the date of request was 07/12/2017 and the date of decision was 07/12/2017. If you have ever had to deal with health insurance, you know they never do anything quickly, and definitely not in the same day, unless its screwing over their clients. So I called them and was on hold for 45 minutes, hung up on and then called back and transferred to 6 different people. I was on the phone from 8PM to 12:37AM. I never got an answer, but was told that the doctor who prescribed the medication for me must fill out the appeal forms and then they will review it. I called my doctor the next morning, and she told me that they are working on it now and will let me know once it has been finished.
7 August 2017. The denial letter arrives at my house stating that this person Nidhi Gupta M.D. who claims to be a United Healthcare Medical Director, specializing in Internal Medicine knows what is better for me than my actual doctor. This person does not know anything about my medical history or has ever met me, but they know what is best for me. This is outrageous. The only reasons that someone would get approved for this is if they are blind, they are unable to inject insulin from a physical impairment, their bodies are so deformed from taking so many shots it’s almost impossible to do, or that have a needle phobia. I do not fall in to any of those categories, so unless I want to cut off my hands, blind myself, ruin my body or lie about having a phobia of needles, I am screwed.
It was October of 1991 when I was diagnosed with Type 1 Diabetes. Just before Halloween, so I couldn’t go trick or treating and wasn’t allowed any candy. I have been taking injections every day since then.
My total number of injections to date: 34,573
27 years since the tragic news, I get a glimpse of hope that life could get better, all to have a money hungry company: United Healthcare, Oxford, OptumRX and Briova tell me that they know what is better for me. We, the people, should not have to stand for it. Why do these horrible corporations get away with anything they want? Its time for the people to stand up and say “NO MORE!”
I want a Lawyer to help me bring these bastards to their knees, I want to make them pay, I want everyone who makes over 100 thousand a year there to be striped of their benefits and robed of their salary like they do to us. I am ready to take this corporation to the mat, All I need is a good lawyer who enjoys a challenge. Who’s with me?!!!
I am sorry they did this to you. You should probably contact Mike Castagna directly and at at the same time have you doctor contact him as well. Perhaps there can be an arrangement made. Further you should contact UNC’s PR Department and a local news station or reporter. These people only move when they are exposed to media inquiries. Good luck!
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Thank you John
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I do use Afrezza now. I am type 2 and use only Afrezza. I understand Afrezza is indistinguishable
from insulin produced naturally after it is in the bloodstream. My last two A1c 6.1 and 6.4. I have seen reports of fantastic sugar control when coupled with a continuos glucose monitor. I am very happy except Afrezza is a class 4 drug (not in formulary) and costs me $100 per month copay.
Recent report shows improved signaling between pancreas and liver compared to other insulin drugs. IMHO a big deal. Drugs closest to natural will all ways be better.
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I was able to get Afrezza from AARP managed by United Health Care through an appeal. I do have to pay $100 per month copay. My doctor had to file the appeal when I tried I was refused. I think it likely United Health Care would by afraid to refuse to follow a local doctor’s recommendation for liability reasons. My doctor stated I had 3rd stage kidney failure when on Metformin. Your conditions caused by shots may help convince UHC if your doctor makes the case for that or kidney problems.
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Sorry to hear. Perhaps BigRX just sees Afrezza as another RAA – mimicking the pancreas must be beyond them….
Perhaps you could open a gofundme.com campaign and get some $$ for lawyers – I’m sure there are a lot of ppl who’d help!
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Thank you very much, not a bad idea
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Hi Kevin, Your blog is remarkable. I see that @RealRosenRosen provided our MannKind Cares phone number (844) 3-AFREZZA. Please do call us. We are very interested in following up. See Safety Info: bit.ly/2kxoPWu)
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So sorry, Kevin. I’ve been following the Afrezza store since before it’s been approved. The roadblocks placed in front of patients is sickening and enraging. This is hands down the biggest advancement in mealtime insulin since pens, and yet we see no traction in prescriptions because of the prior authorization and spirometer requirements. I applaud you for sharing your story. It’s the only way this can change. Patients need to demand Afrezza or find a doctor who will listen.
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