• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

What's everyone's take on Afrezza?

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
DeusXM

DeusXM

Well-Known Member
Relationship to Diabetes
Type 1
There's a lot of buzz right now about Afrezza - for those who are uninitiated, it's an insulin inhaler device that delivers super-rapid-acting insulin which supposedly promises to almost eliminate hypos. There are also users out there who are claiming they don't even need to carb-count anymore.

I've raised a few questions on this. One thing I strongly object to is the fact that over $1bn has been sunk into this, more than any diabetes medication I can think of. I understand that pharmaceutical companies need to make a profit but to me, there seems to be something very obscene about spending so much money on what is possibly a slightly better insulin, and presumably diverting cash and expertise away from developing a cure.

I've raised this objection publically elsewhere, and the response has been, um, interesting.

One of the best resources for information out there is http://afrezzauser.com/. Great information, sounds like a real success story. But then you read between the lines. Much of the problems that the author states they had before Afrezza seem symptomatic of just plain bad diabetes management - complaints about taking too much insulin causing hypos etc. I'm not disputing the challenges we all face here but this particular case just sounds a bit too much like someone not really trying.

Then there's the bit that really bothers me, particularly as I work in PR and marketing and I know how this game is played.

What sort of a person sets up a blog devoted to one particular medication?

There's quite a few Tweeters and bloggers who all seem to have magically appeared all of a sudden, very recently, who then either blog or tweet about nothing BUT Afrezza and some of the more extreme of them start declaring Alfred Mann (the guy behind Mannkind, the developer of Afrezza) as some sort of latter-day saint. Again, I don't dispute that Alfred Mann has played a pivotal role in many life-changing technologies (pumps and prosthetics among them) but the moment you start pointing out these were excellent business decisions that create a certain level of market dependency, I've noticed that Afrezza trialers act as if you've just shot their favourite puppy in front of them and then tried to feed it to their mother as a casserole. Even more interestingly, if you do this on a forum, almost without fail, a new user will magically appear to tell you that you are wrong and then never post again. This has actually happened on this board, to Northerner, I note.

Meanwhile I've also been speaking to reliable bloggers out there who say I'm just failing to appreciate Afrezza for what it is because the feedback has been so good, no-one has anything negative to say about it.

Do we believe this?

Is it really possible that there is a medication out there that has zero side effects, is completely flawless and even seems to let you bolus without any need for carbohydrate whatsoever?

I don't think so.

I'd like to try Afrezza, certainly. But just as a head-up for everyone...if when you start suggesting a particular medication isn't a complete miracle and its funder isn't Jesus incarnate, and the response is open hostility, disbelief, accusations of trying to short stock and all of this comes from people whose entire online footprint consists purely of talk about Afrezza....do you think we're being played? And do we want to open up a book on whether or not a one-off poster might suddenly appear in this thread? :D
 
Last edited:
Well, I'm certainly not a one-off poster 🙂 But I do agree that all avenues for hype are being explored - I'm sure it's true of many products these days. I would also be suspicious of anyone who set up purely in support and promotion of a single product (as I do about anyone who says there is only one thing/diet/magic fruit/sea nymph who can solve a problem whether physical, metaphysical or purely fantastical. OK, maybe bacon comes close 😉

I've never liked the concept of inhaling insulin - maybe if that's what Banting and Best had come up with then I would be happier with it, but if that were the case, I wouldn't be surprised if, by now, someone had come up with the groundbreaking notion of injecting it or feeding it through a canula from a pump. I haven't researched too deeply into it, but you would think that some of the more basic questions and their answers would have bubbled to the surface. Such as what really is the long-term effect of inhaling it? How do you fine tune a dose if you are particularly sensitive to it? How do you take in sufficient if, on the contrary, you are insulin-resistant, and need lots and lots? The quantities per squirt are fixed, are they not? How does it relate, cost-wise, to injected insulin? Loads of other questions I'm sure.

They really can't afford for it to fail, and I be whatever is percolating through here in support of it is minuscule compared to the massive marketing effort being applied to the US physicians and health insurers.

It's not for me, I prefer a concept like smart insulin or, even better, an actual cure. As you say, $1bn would have gone a looooong way to increasing the odds of the cure being found, given how many potentials are currently only 10 years away, and no doubt hampered in their progress to some extent by lack of funding to speed things up.
 
DeusXM said:
Is it really possible that there is a medication out there that has zero side effects, is completely flawless and even seems to let you bolus without any need for carbohydrate whatsoever?
Click to expand...

Well if there is, it isn't this one 🙂
Just read this post about the review in The Medical Letter:
"Afrezza, the only inhaled formulation of insulin currently available in the US, appears to be only modestly effective in reducing HBA1c. Cough is a common side effect and the long-term pulmonary safety of inhaling insulin is unknown."

Review here: http://www.thestreet.com/story/1306...ter-review-from-independent-drug-arbiter.html
 
What would happen if you had a streaming cold? or hay fever? There are times when there's so much coming downwards, I wouldn't stand a chance of getting anything UP my nose! (Sorry if the description is a bit graphic, hope nobody was in the middle of their tea)
 
Glad I wasn't eating MY tea when I read that!
 
Hype aside, and snorting insulin too (yuk), I think super rapid insulin is the key, if you have an insulin capable of acting almost instantly you have the means for perfect control. It's the only way a closed loop system would ever actually work like a pancreas really. In fact I've been wondering if I could go completely rogue on novorapid myself, given my rapid reaction to it, but I suspect I'd need more than an excel spreadsheet to work that out 😱
 
I'm a born cynic, and my view is that somebody is banking on Afrezza to take over from injected insulin and earn him $1,000,000,000's! Given a choice of two equally effective (I'm not saying they are) insulin delivery methods, doctors are far more likely to prescribe something that doesn't require the patient to wave needles about. And also, people are fearful of needles (before my son was diagnosed this would have seemed like the biggest deal to me), so maybe it would be a more popular choice. And perhaps cheaper for Health Services and medical insurers?

But personally I have huge concerns about taking in a substance via the lung tissue, and the possible ill effects of long term use, and no way would I agree to my son trialling it.
 
KookyCat said:
Hype aside, and snorting insulin too (yuk), I think super rapid insulin is the key, if you have an insulin capable of acting almost instantly you have the means for perfect control.
Click to expand...

The insulin pump can apparently be implanted in your abdominal cavity for a much more rapid delivery of insulin. I believe Lesley from INPUT has an implanted pump.
 
Sounds a bit "Cold" to me "A Freezer" :D Hope its true but :confused: Would put my money on the "NUK" team 😉
 
Redkite said:
The insulin pump can apparently be implanted in your abdominal cavity for a much more rapid delivery of insulin. I believe Lesley from INPUT has an implanted pump.
Click to expand...

I've read about that but apparently it's still not quite as rapid. Interesting stuff though, and there's something about liver function that I'm still absorbing 🙂. Definitely not on board with inhaling a drug a though, there's no way I'd risk that.
 
NO no no ! - Lesley has a Diaport - she had trouble with sites, I dunno why - and a Diaport is basically, a stoma - I dunno if it acts like a cannula so you can attach a pump, or inject into it, or some other means of delivery.

However she's on either her second or third now. Apparently because it's always all going into the same place, whatever insulin she uses, crystalizes round the internal bit under her skin, so they've had to give her a GA , take it out, scrape away the crystals, and re - implant it. (you have to have it done under GA anyway)

I was going to contact her to ask about it, thinking it may be a solution for me, until I read what she'd already written about it.

There have been other inhaleable insulins in the past - which have never ever been popular.

I agree with Redkite - for weeks and weeks I've had severe difficulty actually breathing through my nose - I'd have been dead by now if I had to inhale my insulin. And this is by no means a new phenomenon for me - I've had the same sort of colds all my life, I once jokingly said (but based on the truth) that I actually only have one cold a year. From October to March, usually !
 
I'm pretty sure the dia port goes into the inner cavity (intra-peritoneum?) - the tube is much longer and goes way below subcutaneous. Lesley showed me once and she just connects infusion set tubing to it like 'normal' but doesn't need to change the site
 
Yeah, but it was the apparent 'normality' of this thing with the crystallization happening that I didn't fancy, Mike. Esp since I throw up for a week after a GA anyway, and have to stay on a drip having vile injections into my thigh muscles for the duration cos I can't eat or drink ! (The alternative to the jabs is rectal suppositories which actually are a lot less unpleasant TBH, but to know you've actually chosen to have the procedure rather than only having the operation cos you had little alternative? I don't think so, do you? !!)

Just shows there's snags whatever way we do it, with what's currently available, doesn't it?
 
Yes I wouldn't fancy Lesley's set up either!
 
The infamous 1st time poster, posting again!!

I guess that I am the one time poster that DeusXM is talking about. (Well technically not true anymore as this is my second☺ )

Also, prior to this reply, I reread my previous post and I don’t think that it could in anyway be interpreted that I was claiming Northerner was wrong. I was merely pointing out that the level of claimed control from Afrezzauser was impressive and worth a look.

I am not diabetic and never claimed to be, However I have watched my Sister in Law as Type 1 over many years deal with complications that no doubt originated from less than perfect discipline; probably due to denial during the early stages and a lack of understanding about her condition. It has taken her a considerable time to get a handle on the disease and unfortunately took a hospital stay before she really got on top of things.

Regardless of the reason, she has struggled to manage her condition effectively and still has issues bouncing between the high and lows whilst constantly readjusting to manage food intake and the long tail effect of her current fast acting insulin.

My interest in Afrezza originated after watching an Al Mann interview regarding the drug and how he had not seen any other insulin behave in the same way as afrezza did.

He was an extremely impressive individual, a self made Billionaire, and at almost 90 had personally funded the development and approval through numerous challenges to a cost of $1billion. And whilst I accept that $1 Billion could have helped fund research towards a permanent cure, I do not believe that anyone can argue how an individual wants to spend his own money.

I continued my research in Afrezza and in the interests of disclosure, after this point I did make a long-term investment in this business.

Since its launch I have continued to keep my eye out for Internet articles and blogs; looking for user feedback and opinion and whilst I fully accept it is entirely possible that bloggers, particularly those that only blog about one product, including afrezzauser, could be receiving compensation directly or indirectly from the drug companies.

I do not accept that Sam FInta ( Afrezzauser ) who has been specifically identified and was part of the original FDA trials would then put himself at a considerable litigation risk by fraudulently representing fake performance data through the written word and his supporting images.

It is possible that he may be painting a rosier picture to the external world, but if only a proportion of what he is currently claiming proves to be true across a larger representative sample of the diabetic population (E.g. Tight Blood Glucose level control, reversal of insulin resistance and the lack of Hypo readings when Afrezza was used without any carb intake) then I am personally very excited about its future benefits.

Whilst my Sister in Law is eager to trial Afrezza, I accept that this is probably due to our discussions and I understand that there can be general skepticism and a fear of the unknown regarding any new product particularly when it has a new delivery method. But Afrezza appears to be creating a ‘buzz’ all of its own through social media, great reviews on sites like WebMD and mixed in with those people who perhaps have their own agenda, the underlying message appears to be more than supportive and this is something that I continue to monitor.

I therefore reiterate my initial comments that I believe that Afrezza’s progress and particularly the user feedback is certainly worth monitoring closely by the Diabetic community and that it should not be written off just simply because it is different.

UK diabetics should hopefully have a slightly easier path than the US as they will have the benefit of a little more time to hear and digest additional user experience information before the product is available here.
 
My interest in Afrezza originated after watching an Al Mann interview regarding the drug and how he had not seen any other insulin behave in the same way as afrezza did.

He was an extremely impressive individual, a self made Billionaire, and at almost 90 had personally funded the development and approval through numerous challenges to a cost of $1billion.
Click to expand...

And here we go....yet another Afrezza cheerleader who seems incapable of posting without sounding a bit like a pod person. No-one ever seems to know who is the guy in charge at Novo Nordisk or Bayer or Sanofi or any of the other companies that have successfully created effective, profitable medication for diabetes, do they? Why is it that Al Mann is always singled out? I'm not disputing he's made useful contributions to a variety of fields of medicine, but he's no Banting or Best - he's a guy that knows how to invest his money in clever people who then never get credited for the work they do. That doesn't make him a hero, that makes him a good investor.

whilst I accept that $1 Billion could have helped fund research towards a permanent cure, I do not believe that anyone can argue how an individual wants to spend his own money.
Click to expand...

Of course. But I believe we should be actively critical and skeptical of those who invest $1bn in a revenue stream rather than a cure and then expect us to be grateful and elevate them to the position of 'hero'.

I do not accept that Sam FInta ( Afrezzauser ) who has been specifically identified and was part of the original FDA trials would then put himself at a considerable litigation risk by fraudulently representing fake performance data through the written word and his supporting images.
Click to expand...

And I don't think I ever stated that I thought Sam Finta was lying. I believe his testimony. The problem I have with it is even just a quick scan through and I can see several instances where the problems he associates with injected insulin aren't really problems with the insulin, but with his own approach to diabetes management. I don't agree with this picture that we're apparently all just a few minutes away from collapsing with hypos because of our terrible insulin which we've no idea how to use. I can only speak for myself but having treated my diabetes with insulin injections for 16 years, I can tell you exactly how many times I've been in serious danger because of terrible insulin - it's 0 times. So while I don't dispute Sam's experience, I don't think it's right to portray multiple serious hypos that need other people's assistance as being standard or even common for people on insulin.

I understand that there can be general skepticism and a fear of the unknown regarding any new product particularly when it has a new delivery method.
Click to expand...

Not at all. I'm all in favour of new insulins and potentially more effective delivery methods.

It's just that if I was genuinely serious about tackling the horror of diabetes (as Al Mann is, supposedly), I'd have invested $1bn in something a bit more permanent, rather than something that's essentially a new product line. There are several promising routes to cures for diabetes that have yet to go into human trials because they can't get funding. You probably do not understand how frustrating it is to live with this condition, see promising cures on the horizon and then find the money is being spent on anything other than these cures.

But Afrezza appears to be creating a ‘buzz’ all of its own through social media, great reviews on sites like WebMD and mixed in with those people who perhaps have their own agenda, the underlying message appears to be more than supportive and this is something that I continue to monitor.
Click to expand...

Dear lord....so we're now taking having 'buzz' on social media as some kind of proof of wonderfulness. There's 'buzz' on social media for videos of cats falling over. There's also a lot of astro-turfing - my own personal experience is the moment you post something on Twitter that doesn't suggest Al Mann is our saviour and that Afrezza is awesome, you get flamed straight away by people who quickly turn out to be investors. That's not buzz. That's not positive. That's people wanting to protect their money and placing their concerns above my wanting to protect my health.

I'll be interested to see what happens as more people go on to Afrezza, whether the positive experience will be repeated, and importantly, whether that apparently important social media 'buzz' will allow dissenting voices.

I therefore reiterate my initial comments that I believe that Afrezza’s progress and particularly the user feedback is certainly worth monitoring closely by the Diabetic community and that it should not be written off just simply because it is different.
Click to expand...

Then you clearly don't understand my concerns. I'm not writing off Afrezza because it's 'different' - I'm disputing entirely that it's different. It's just another insulin that probably works a bit better than what we have at the moment, which cost a fortune to develop.

And then we're expected to be grateful. No-one ever actually asks us people with diabetes what we want, do they? Because of course, what we want generally can't be turned into a nice little profitable line.
 
Well said DeusXM, I agree with every word.

It's ridiculous to paint a picture of this Al Mann as some kind of caring philanthropist - he's invested his money in something he expects to generate him even more money, hence the aggressive marketing and the tiresome saturation all over social media. What people with type 1 actually want is a CURE, but obviously if that happened, Al Mann wouldn't get a fat profit would he?
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top