What you say is true, but whoever is going to pick up Afrezza (hopefully someone will) isn’t going to necessarily care about a handful of people who have had success with it. They’re going to care about the studies and about the larger population of “average” people (who are probably not on these types of sites). So in that sense, I would say it matters a lot.
Fair enough and this is why Sanofi has done an awful job on the marketing and distribution front. According to many they haven’t even heard about Afrezza and in most cases neither has their doctors or endos. There has to be a start somewhere and the early adopters are that start.
I agree, so far, most of what I have read about people using it who were type 1 and who had great success seemed to be people who already had very good or pretty good control and or who didn’t fluctuate a lot or have really bad lows or other such issues. I guess I could be wrong because there may be others out there who also had success, but that was my impression so far from reading here and elsewhere. Three people saying they’ve had no lows doesn’t mean no one has or will, same for issues with treatment of highs. I remember one or two people giving up here because of issues with either or due to lung issues. In any case, I think the pricing and insurance issues should have been worked out long before it was marketed. Few people can afford to pay out of pocket for this and other overpriced medications. I recently found out a leukemia drug I need for one of my kitties was doubled in price 2 years ago when it was bought by another company. I wish I could get a law degree and start fighting this sort of thing, it has to be stopped.
So if I’d had mediocre control before afrezza, would my testimony about how much easier it’s made my life be somehow more valid?
Maybe it should be considered more valuable because I know what a pain in the butt it is to actually manage effectively with injected insulin— it isn’t easy. It’s a nightmare. It’s all consuming. It’s a nightmare that ended when I got afrezza.
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Yes, Sam, I used fast acting insulin from 2004-2010. I started with R and UL (just as they were discontinuing it) because I could buy them without a prescription. Then I found an Endo who would prescribe. I tried Humalog, which I could not use without getting unpredictable highs or lows. Then Apidra samples, which worked perfectly for me, but which my insurer wouldn’t cover. Finally I used Novolog which worked well enough. I ate a diet of about 110 g a day of carbs and was usually using 2 units per meal. The most I used was 11 u for the whole day one day during the holidays. This got my A1c down to 5.4% which is as low as mine seems to get.
I figured out, eventually, that I have a form of MODY, based on family history and the fact that my post-meal control was gone for 15 years while my fbg stayed just mildly high. Insulin stimulating drugs were what the experts recommended because they also cause the production of C-peptide. So I switched to a tiny dose of Repaglinide though frankly, I got much better control with insulin as I could titrate it to carbs. But my insurer wouldn’t pay for pens, just vials (I got vials from a friend with a very generous insurance plan for a while), and now that I’m on a Medicare plan, it would be humalog or nothing. So I’m sticking with repaglinide.
And I’d absolutely welcome the observations of anyone who has actually used it for whom it didn’t work marvelously. If you can find anyone that fits that description— send them here to join the conversation, please----
100% of the naysayers I’ve seen thus far, including you, all have one thing in common-- they’ve never used it. I think that’s a pretty important distinction.
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Sam,
Given the hostile and disrespectful tone with which you and other enthusiasts have responded to people with diabetes who are not on your bandwagon, there is no way I would send anyone to you.
Jenny,
I have been here all along, discussing a plethora of diabetes issues with a lot of different people. I don’t think it’s fair for you to crawl out of the woodwork only when seeking alpha blows up regarding MNKD and accuse me of being hostile and disrespectful towards people with diabetes, then disappear again as soon as the MNKD furor dies down.
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[quote=“Sam19, post:27, topic:50293, full:true”]
[100% of the naysayers I’ve seen thus far, including you, all have one thing in common-- they’ve never used it. I think that’s a pretty important distinction.[/quote]I know you were talking at Jenny but I wanted to say that as one of those 100% I simply CAN’T use the inhaler even if I wanted to. That’s great it works for you. But the thread is (like the other one) is about Sanofi ending its Afrezza partnership with MannKind. And there are solid reasons why that happened.
The users of this product who are hell bent on singing it’s praises should go apply to the marketing department of the company and offer to market it properly. Yelling at and arguing with diabetics isn’t the way - LOL The Afrezza users should rally and make effort to keep the product in the market at all!
I’d be happy to explain. I live in Alaska. My primary insurance covered a 3 month / 3 box supply with a copay of $35. My secondary reimbursed me for the $35. It didn’t cost me a penny until October 2015, when I opted out of my primary policy and my until-then secondary policy became my primary. Had I not done my homework and gotten the discount card, at this point a 3 month supply would have cost me $168 in copay. As I’ve only filled the rx once since then, and the discount card has a $150 maximum, my most recent 3 month supply cost me $18… As will each refill until the discount card becomes inactive, then I’ll be paying the whole $168 for a 3 month supply out of pocket. That’s $0.54 per day. I typically buy at least one premium coffee per day at a cost of at least 5x that price. I consider afrezza to be the best money I’ve ever spent.
If I had no insurance coverage at all, I’d pay the approximately $1000 for my three month supply with cash if I had to, and I’d still consider it the best deal in the world at $333/ month. That’s a lot less than a lot of middle class people chose to pay in car payments instead.
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Jenny - this is completely unfair and out of line. I’m sorry it is.
Why are the users of Afrezza being made to defend themselves so vigorously when reporting outstanding results to folks who have never even used the insulin? I just don’t get it.
Obviously, this specific thread will get comments from the users (i.e. Sam, myself etc.) voicing disappointment since we’ve had such great results. If you’ve used it and it did not work for you then PLEASE by all means tell us why. It’s cool, it’s not for everyone.
I’ve never pushed Afrezza on anyone - period. I’m not on a “bandwagon.” I’m just a T1 trying to do the best I can and share my experiences with fellow diabetics. Likewise, I don’t comment extensively on any product that I’ve never personally used and call out the actual users. It’s just not right and your comment above saying “there is no way I would send anyone to you” is completely counter-intuitive to what this community is about.
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I wish that this product would remain available for those who can and do use it. But the theme of the thread is NOT about discussing it’s merits. It’s about the product reaching some marketing trouble. I don’t get why every single Afrezza titled post has to become a new collection of replies defending it and then a scolding about what TuD is all about. Sheesh - write to MannKind and offer your Woot Woot about their product to them…THEY need to know who is using and having success with the insulin. WE know already. If you want to keep the product on the shelf then there is a much more important issue to get involved in. I saw in another thread that folks are going to send Dr. Oz letters and get him on the bandwagon. LOL - talk to them, this will be a nail in the coffin for the insulin 
How many of these posts do we need around here anyway?!?
It’s also not about your asthma.
[quote=“Sam19, post:36, topic:50293, full:true”]
It’s also not about your asthma.
[/quote]Asthma??? LOL - you must have me confused with someone else.
Sorry I guess I assumed that asthma was the reason that you’ve posted dozens of times about how you can’t use it…
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I see no need to keep the scope of any TuD discussion strictly within some narrow and arbitrary limit. It’s often the tangents that contain interesting and useful info. If I feel that any comment is repetitive or irrelevant, I can simply move on. We’re here to support each other. People need to talk about what’s important to them.
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Yes, and that is fair. But there is no reason to defend the product here. This particular thread (a dup of another) was closed already. And reopened for more important talk? LOL - MannKind could use the money folks are offering up to others here on TuD though! They owe Sanofi a huge chunk of change 
Folks, let’s everyone take a deep breath. Have we forgotten one of the cardinal rules of diabetes—YDMV? Choose any given med and it will work terrifically well for some people but not for others. (Humalog doesn’t work for me, might as well be a placebo. So I just use something that does work. End of problem.) And the same is true of preferences. Some people like X for their own reasons, and some don’t. So what?
Because Afrezza is a godsend for some and a ho-hum for others, doesn’t make anybody right (or wrong!). It just is what it is. This community is about being a big tent. Let the discussions roll.
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