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Post by dreamboatcruise on Mar 29, 2018 18:50:37 GMT -5
Forgot to mention, my new PCP said he had heard that it's hard to figure out correct dosing and that was part of his issue. I wonder if One Drop has any info on their website or public statement about having available coaching to support new Afrezza patients. Seems if this "issue" is a real one for the doctor, a patient could allay it by saying he was going to use the One Drop coaching... would be helpful I would assume to be able to point to something showing One Drop specifically knows how to coach patients through Afrezza titration. It probably wouldn't be possible for patients on government programs (Medicare/caid), but I wonder if MNKD could pay for some number of months of the One Drop Pro for each new patient. Seems One Drop might cut a really good deal as some percentage of the patients might opt to continue even after the free period. |
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Post by digger on Mar 29, 2018 18:57:32 GMT -5
"The short answer is because you can. The difference between the early adopters and most others is that the early adopters are heavily focused on looking for a solution for something (non-diabetic numbers, no hypos, no spikes, and so on.) They are prepared to put in the work, to watch their CGMs closely, and to take those follow up doses. Consequently they get excellent results. Now you have everyone else. Typically they want diabetes to have as little impact on their life as possible. It's why in Type 2 pills are popular and diet and exercise is not. It's why like most other Type 1s I don't do follow up boluses as I should, why I don't use my CGM, and why I find it hard to care about spikes. Right now I avoid going high because it is a pain to have to get back to normal, if it was trivial I could easily understand the attraction of ignoring bolusing and straightening things out later - especially for kids who don't want to appear different." I am surprised that there seems to be a consensus that Afrezza takes more "work" than using conventional prandial insulins. I recall hearing from patients that one of the benefits of Afrezza was that it took much less time and effort to manage diabetes, and that they no longer had to think about it all of the time. For example, patients don't need to plan what and when they will eat and take their insulin in advance and then be sure to adhere to the plan. Instead they take Afrezza at the start of the meal. Nor do they have as many worries about severe hypos and managing "insulin on board" hours after dosing. When long term T1 PWD like Paul Sparks say that Afrezza has changed their lives, this is what I think they are referring to. You can get good results with conventional insulins, but compliance is much more difficult. Ok - I can clear this up for you.  "I am surprised that there seems to be a consensus that Afrezza takes more "work" than using conventional prandial insulins."Only in so far as getting the initial titration right, and that only because it's new. Once it's set up I cannot see any difference. " For example, patients don't need to plan what and when they will eat and take their insulin in advance and then be sure to adhere to the plan."You haven't had to do that since the arrival of RAA. Nobody I know pre-boluses, you just bolus when the food arrives (it's quite entertaining watching the food arrive for a diabetic meetup - there is a sudden flurry of action and pumps bleeping). "Nor do they have as many worries about severe hypos and managing "insulin on board" hours after dosing."Most people don't worry about severe hypos, that went out when CGMs arrived. If you are hypo-unaware then the CGM is your lifeline, if you are not then you will feel the hypo and deal with it. Am I saying people don't get severe hypos on RAA? Absolutely not. You can get them on RAA or Afrezza (see the phase 3 trial data) although they are less likely on Afrezza. The thing is, a severe hypo is so unlikely in general that it's not a big consideration, although it does remain a worry. Managing insulin on board - your pump will do that, some meters will do that (especially outside the US), you can even do it yourself as it is trivial. "When long term T1 PWD like Paul Sparks say that Afrezza has changed their lives, this is what I think they are referring to."This is probably the least convincing argument for a diabetic. It is axiomatic in the diabetic community that all diabetics are different, and that what works for one may not work for another. For that reason all diabetics will be happy for Paul, but very few will regard his happiness as a reason to consider changing. Whatever happened to Paul Sparks? He popped up for that one senate hearing last summer, said some nice things about afrezza, and then just sort of disappeared. |
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Post by dreamboatcruise on Mar 29, 2018 19:10:42 GMT -5
digger... he seems to be quite active professionally.
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Post by digger on Mar 29, 2018 22:43:19 GMT -5
digger ... he seems to be quite active professionally. Yes, but as a diabetic spokesman, he lasted for all of one day and that was it. |
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Post by dreamboatcruise on Mar 30, 2018 3:54:34 GMT -5
digger ... he seems to be quite active professionally. Yes, but as a diabetic spokesman, he lasted for all of one day and that was it. He's not really a "diabetic spokesman". He's an actor... with a family that he needs to provide for by doing what he gets paid for. Kudos that he took the time to testify that day. |
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Post by mnholdem on Mar 30, 2018 13:15:20 GMT -5
The problem with your thesis is that CGMs will never make RAA insulin work better. They only graphically display (in real time) how badly injected insulin performs at controlling blood glucose.
Happy Easter. |
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Post by ezrasfund on Mar 30, 2018 13:17:03 GMT -5
"The short answer is because you can. The difference between the early adopters and most others is that the early adopters are heavily focused on looking for a solution for something (non-diabetic numbers, no hypos, no spikes, and so on.) They are prepared to put in the work, to watch their CGMs closely, and to take those follow up doses. Consequently they get excellent results. Now you have everyone else. Typically they want diabetes to have as little impact on their life as possible. It's why in Type 2 pills are popular and diet and exercise is not. It's why like most other Type 1s I don't do follow up boluses as I should, why I don't use my CGM, and why I find it hard to care about spikes. Right now I avoid going high because it is a pain to have to get back to normal, if it was trivial I could easily understand the attraction of ignoring bolusing and straightening things out later - especially for kids who don't want to appear different." I am surprised that there seems to be a consensus that Afrezza takes more "work" than using conventional prandial insulins. I recall hearing from patients that one of the benefits of Afrezza was that it took much less time and effort to manage diabetes, and that they no longer had to think about it all of the time. For example, patients don't need to plan what and when they will eat and take their insulin in advance and then be sure to adhere to the plan. Instead they take Afrezza at the start of the meal. Nor do they have as many worries about severe hypos and managing "insulin on board" hours after dosing. When long term T1 PWD like Paul Sparks say that Afrezza has changed their lives, this is what I think they are referring to. You can get good results with conventional insulins, but compliance is much more difficult. Ok - I can clear this up for you. "I am surprised that there seems to be a consensus that Afrezza takes more "work" than using conventional prandial insulins."Only in so far as getting the initial titration right, and that only because it's new. Once it's set up I cannot see any difference. " For example, patients don't need to plan what and when they will eat and take their insulin in advance and then be sure to adhere to the plan."You haven't had to do that since the arrival of RAA. Nobody I know pre-boluses, you just bolus when the food arrives (it's quite entertaining watching the food arrive for a diabetic meetup - there is a sudden flurry of action and pumps bleeping). "Nor do they have as many worries about severe hypos and managing "insulin on board" hours after dosing."Most people don't worry about severe hypos, that went out when CGMs arrived. If you are hypo-unaware then the CGM is your lifeline, if you are not then you will feel the hypo and deal with it. Am I saying people don't get severe hypos on RAA? Absolutely not. You can get them on RAA or Afrezza (see the phase 3 trial data) although they are less likely on Afrezza. The thing is, a severe hypo is so unlikely in general that it's not a big consideration, although it does remain a worry. Managing insulin on board - your pump will do that, some meters will do that (especially outside the US), you can even do it yourself as it is trivial. "When long term T1 PWD like Paul Sparks say that Afrezza has changed their lives, this is what I think they are referring to."This is probably the least convincing argument for a diabetic. It is axiomatic in the diabetic community that all diabetics are different, and that what works for one may not work for another. For that reason all diabetics will be happy for Paul, but very few will regard his happiness as a reason to consider changing. If most PWD don't worry about severe hypos, don't need to pre-bolus for meals, and so forth, I guess the conclusion is that Afrezza seemed like a good idea when it was first being developed 20 years ago, but advances in CGM's, RAA's and pump technology made Afrezza into an unneeded innovation by the time it came to market. We all know that even 100 Paul Sparks type anecdotes don't add up to data, as they say. But what was Sparks talking about when he said Afrezza changed his life, and why did he bother to go and testify before Congress? Is he just a publicity hound or a shill for MNKD? |
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Post by akemp3000 on Mar 30, 2018 13:49:45 GMT -5
IMO the paradigm shift will increase when doctors hear good feedback from their peers. This is much more important than doctors getting information from sales reps, celebrities or ads. This has already begun with doctors who see amazing results from their own patients and who are then motivated to discuss with their peers. Those who don't share this type of success with blood sugar control should frankly stop practicing medicine. The momentum will likely leap forward when the STAT study results are presented and discussed at the coming ADA and will be further reinforced when doctors finally understand why one of their highest industry peers left Lilly to join Mannkind. GLTA
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Post by ilovekauai on Mar 30, 2018 16:17:05 GMT -5
Well I have some good news to share. I called the MNKD Cares hot line a week ago, and they were really helpful in getting me info on endos located here in Portland who are into Afrezza. I followed thru, my new pcp put in a referral, and the diabetes clinic at OHSU just called me, and I'm scheduled to meet with my new endo on May 4th! I can't wait to meet with her to discuss Afrezza and become a new user of this awesome product.
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Dartman
Newbie
Posts: 24 
Sentiment: Way Too Long
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Post by Dartman on Mar 30, 2018 17:19:32 GMT -5
Well I have some good news to share. I called the MNKD Cares hot line a week ago, and they were really helpful in getting me info on endos located here in Portland who are into Afrezza. I followed thru, my new pcp put in a referral, and the diabetes clinic at OHSU just called me, and I'm scheduled to meet with my new endo on May 4th! I can't wait to meet with her to discuss Afrezza and become a new user of this awesome product. Congrats! After asking at the Fred Meyer pharmacy about Afrezza prescriptions for the last few years, the pharmacist said one was filled in Tualatin (suburb of Portland) last week! Beware though, the pharmacist said the endo apparently did not understand the dosing and the instructions on prescription filled were messed up. I'm not sure why the titration pack wasn't prescribed. |
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Post by dreamboatcruise on Apr 1, 2018 3:44:58 GMT -5
Sayhey, No one is questioning whether or not Afrezza works. The question is whether or not mnkd can figure out how to sell it. You saying "No one is questioning whether or not Afrezza works" to me is another turning point as "The skeptic in me(you) thinks the lost data none of us have seen is similar to the agreement with RLS". I have spoken with many doctors, most will now say they have heard of afrezza but when you talk with them they have little idea what it really is and its benefits. Part of the problem is the experience level of the sales team and being able to explain why afrezza should be the standard of care for most T2s while contrasting the antiglycemics.Then you have the 171 and 175 studies as the "standard" of information for what afrezza is. Read those and take them at face value and I could make a really good argument afrezza is at best a niche drug. Then look at the insurance coverage and cost and its pretty clear why afrezza has not sold. Throw in the lost years with Sanofi and the fact CGM Cloud technology is now starting to be used and it completes the story. It will only take a few clinical situations like what happened with Hilliard where Mike can now showcase the results that hospital group is now having plus some time, IMO about 2 years. The great news for MNKD is no BP has anything in their pipelines which can compete and MNKD now has Dr. Kendall on the team. It's not inexperience. It's the fact that they are constrained by what is on the label. |
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Post by letitride on Apr 1, 2018 5:37:28 GMT -5
You saying "No one is questioning whether or not Afrezza works" to me is another turning point as "The skeptic in me(you) thinks the lost data none of us have seen is similar to the agreement with RLS". I have spoken with many doctors, most will now say they have heard of afrezza but when you talk with them they have little idea what it really is and its benefits. Part of the problem is the experience level of the sales team and being able to explain why afrezza should be the standard of care for most T2s while contrasting the antiglycemics.Then you have the 171 and 175 studies as the "standard" of information for what afrezza is. Read those and take them at face value and I could make a really good argument afrezza is at best a niche drug. Then look at the insurance coverage and cost and its pretty clear why afrezza has not sold. Throw in the lost years with Sanofi and the fact CGM Cloud technology is now starting to be used and it completes the story. It will only take a few clinical situations like what happened with Hilliard where Mike can now showcase the results that hospital group is now having plus some time, IMO about 2 years. The great news for MNKD is no BP has anything in their pipelines which can compete and MNKD now has Dr. Kendall on the team. It's not inexperience. It's the fact that they are constrained by what is on the label. Is that to say a doctor can only be presented whats on the label and can not discuss the attributes that are not . |
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Post by akemp3000 on Apr 1, 2018 7:01:43 GMT -5
It's understood that label restrictions have been a roadblock to Afrezza but fortunately human nature and the desire to share and absorb important new information will override this roadblock. Afrezza patients who are loving its use and saying it's changing their lives are not restricted by a label from sharing this with their doctors. Doctors are not restricted by a label from sharing successful patient experiences with other doctors. Granted the paradigm shift has not happened as fast as we would like but it's easy to sense it's gaining momentum. An important boost will come with the upcoming STAT study release and will hopefully be followed by strongly worded confirmation from Dr. Kendall that will reach many endos and pcps. This is an amazing science that's not going to be stopped by a label constraint.
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Post by peppy on Apr 1, 2018 7:17:40 GMT -5
It's understood that label restrictions have been a roadblock to Afrezza but fortunately human nature and the desire to share and absorb important new information will override this roadblock. Afrezza patients who are loving its use and saying it's changing their lives are not restricted by a label from sharing this with their doctors. Doctors are not restricted by a label from sharing successful patient experiences with other doctors. Granted the paradigm shift has not happened as fast as we would like but it's easy to sense it's gaining momentum. An important boost will come with the upcoming STAT study release and will hopefully be followed by strongly worded confirmation from Dr. Kendall that will reach many endos and pcps. This is an amazing science that's not going to be stopped by a label constraint. In my world the label should not stop afrezza. It is the system of insurance coverage in this country stoping afrezza. We can say it is the label. The label says non inferior. The physician should be able to choose? NO. There is a system that involves kick backs. It is the corruption in the system that is stopping afrezza. Happy religious holidays. |
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Post by sayhey24 on Apr 1, 2018 7:39:32 GMT -5
It's not inexperience. It's the fact that they are constrained by what is on the label. Is that to say a doctor can only be presented whats on the label and can not discuss the attributes that are not . What the label says is "Dosing must be individualized". Based on the clamp study and the soon to be released STAT and Levin plus whatever Dr. Kendall is putting together plus clinical experience I think they have enough room on the label to individualize dosing as needed. |
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