You are taking a high-level principle and applying it to the wrong test-case. There is no way to make the case that returning to NPH is a reasonable choice for most diabetics. It is heart-breaking that too many diabetics are reduced to it because it is the only way they can actually survive.
I donāt think R and NPH is really anywhere near as bad as youāre making it soundā¦ there are plenty of users here whoāve done itā and most of them were doing it before frequent home bg testing and cgm were even optionsā so letās ask themā¦
@drbbennett, @docslotnick, @eric @mike_barry @DuckFiabetes Would you be willing to pay the cash price for modern analogs with your own money? Or if you had to purchase your own medications would you use R and NPH because of the more affordable price ? At what price level would you personally switch over to R and NPH because analogs were no longer worth it?
Well, what is better, a wrench or a screwdriver?
NPH is not better or worse, it is just different. It is a different tool, it has different uses. I still use it for some things.
You know the increasing cost of insulin is only partly Lillyās fault. Letās add these to the list of groups that share the blame:
- Insurance companies
- FDA
- government bureaucracy
- cost or litigation
- cost of patent infringement
- increasing research costs
Did I mention bureaucracy and FDA? Oh, yeah, I didā¦
Thatās called cherry-picking and it is simply not the way to win a statistical argument. I find it interesting that you are not calling me in this post, since you know we also use NPH.
Instead, you should call on ALL diabetics and ask them the same question ā but, of course, it is quite of moot, isnāt it, because most people cannot even afford to pay for regular insulin without health insurance. So, using your question, you can āwin your caseā simply because most people are already priced out. Is that what we should consider the right thing?
But I will give you my answer anyway. The answer is YES ā I would be willing to use my own money as long as I can still afford it to allow my son to lead a normal life, in the same way as I would be willing to pay every day for a Dexcom for him as long as I have enough money to pay my mortgage and the utility and food bills.
And that mere fact is already WRONG ā I am willing to pay for it because I can still afford it. What about all the other diabetics who CANNOT afford it? When they say no, because they wonāt be able to afford a roof over their head, does it mean that there is an economic justification for the price difference? Of course not.
The simple and sad fact is that these pharmaceutical companies are raising their prices every year by 15-25% simply because they can, as their users are trapped into their product because they have no other reasonable choice. I am a deep believer into the capitalistic system and have been all my life (you need to be with a career in startups), but this is EXACTLY what also makes be a believer in regulated capitalism.
Yeah weāre talking about almost 30 year old technology i have a hard time believing the research costs are a primary culprit
I had no idea youāve ever used NPHā¦ why would you if itās so horrid? And that was not a deliberate attempt to cherry pick i simply named every diabetic off the top of my head on this forum who I believed to have had a long history of R and NPHā¦ in fact Iāve even seen Drbennet be extremely critical of it, so Iām not trying to trick anyone here
@Sam, my impression is that NPH and R do an adequate job of reaching blood sugar targets set out in older guidelines (A1C of 7 to 7.5) for people who are not using a CGM. So I think whatās interesting is that, comparing NPH and R to faster insulins using the technology and dosing regimens that are prevalent around the world, they may not actually be that much worse.
But I would be extremely surprised if people who are not following a low-carb diet are able to achieve comparably low A1Cs (A1C 5.5 -6.5) as we see here from many of our users if we are looking at the combination of exclusively CGM, NPH and R. Then again, I could be wrong.
So my take is that faster-acting insulins are marginally better now for many diabetics but dramatically better for those who are achieving low enough A1Cs to really reduce their risk for blood-sugar related complications. In 10 years, the standard of care will likely move more towards faster insulins, automatic dosing, more aggressive A1C targets and other innovations that will make NPH and R more and more unsuitable for those applications.
The other big problem is the way insurance companies lock in with certain drug formularyās. You have to either get Humalog or NovoLog, and you donāt have a choice.
The insurance companies negotiate a price with them, and then you have no choice.
The problem is not just the makers.
If Lilly went out of business, would diabetics be better off, or worse off?
I would definitely pay for our Novolog out of pocket, at current prices, given our current income. They are certainly worth more to our family and to my son than indulgences like lattes, eating out, and getting house cleaning.
When my son gets into these raging nonstop night highs, short of injecting him every 80 minutes (which I also do often), we can sometimes use NPH, whose DIA allows him not to run low during the day. We use it as a adjunct to modern basal and bolus insulin, and understand well its effect on my sonās BG.
Which is why I know exactly what NPH would do to his life if that was what he was reduced to.
if we could buy the patents for their drugs, better off, hands down!
I personlly would opt for a lower priced insulin immediately if paying for it myself, even though I also could afford the higher priced analogs with cash. In fact depending on what happens with the healthcare market I actually have plans to do soā¦
thatās obviously a personal choice but I would say, depending on your current A1C, your current risk of hypos, and your success with those analogs, it might be a foolish economic decision, depending on how much insulin you use.
Itās a classic save-money-now-pay-more-later conundrum, in that if you cannot get your A1C as low as you do now with the same negligible risk of hypos, you may wind up with complications which will cost so much more in the long run, not to mention them worsening your quality of life.
In my view the blood sugar monitoring technology we now have deserves a lot more credit for lower a1cs than the modern insulinsā¦ realize that when people were using R and NPH by and large they werenāt even testing their blood sugar at homeā¦ they were just maybe testing urine once a day and seeing if it changed colors. A large part of people negative experiences were likely due to testing limitations imo but Iād love to hear from people who know
Insulin pumps and rapid analogs and home bg testing all went mainstream around the same timeā¦ imo the biggest breakthrough was definitely home bg testing-- yet itās the insulins that keep raising their price indefinitelyā¦ and unfortunately theyāll just keep doing so until the demand responds. I understand itās an issue we feel differently about when itās a life sustaining medication, but the cold hard truth is thatās just how economics workā the price will rise until it causes a reduction in the demand and then the two will be in equilibriumā¦ this mechanism is however skewed when the end user is not the one paying for itā¦
So I *wish I was really excited about this project, but after hearing the guy talk, I was a little bit underwhelmed. he may actually be great technically. I feel confident that with he right mix of people you could get a faster-acting insulin out of the door in about 10 years using open source research techniquesā¦just that it really depends on getting the right people, with the right approach.
@Eric, the answer to your question is obviously that we would be worse off.
But your question is purely rhetorical: it does not apply to this issue, because these price increases are not for the purpose of staving off bankruptcy from these highly profitable companies!
All these drugs were developed many years ago. Their sunk costs have been paid back many times over. These regular price increases are simply driving much more profit into these companies.
What they do with this money is immediately put it back into new projects, so as to increase their stock price rather than increasing their paper profit for that year. This way, their stockholders donāt pay high taxes on dividend distribution, but pay lower long-term capital gains taxes on the valuation of the stock. I am familiar with that game and have played it myself.
I am afraid I feel the same way:( I did not hear him talk live, but I researched the project ā I am not sure it is going to go anywhere. I wish them the best of luck though.
You know the old saying: think globally, act locally. In the internet age, I think what it means is āthink globally, but act as narrowly as you can and still be successful.ā
I think that we donāt have to argue about root causes, though. The problem we are faced is one where insulin prices (and all other diabetes drug and equipment prices) are spiraling out of many peopleās reach. As @Sam said, if people had a reasonable choice of fairly priced insulin that had a good performance, then, when they take that choice, their individual decision will automatically lower the price of competing drugs.
We should seriously look at starting a crowdsourced effort to develop a Lantus clone (comparable to Basaglar) or a Humalog clone.
So maybe Iām naive or overly optimistic, but I actually think people should be aiming higher than that. We have a lot of basic research out there on what makes an insulin fast-acting, there is plenty of research on faster excipients (the chemicals that speed insulin through tissue), and I think funding agencies, SBIR grants, and nonprofits might be inclined to fund research that actually provides an improvement on existing insulin or newer technologies as a whole.
My personal dream open-source projects would be either:
a simple device that mixes glucagon and its solution as-needed and then infuses it, using an electrical button, as needed based on BG readings. This would allow people to repurpose their existing glucagon kits to counteract lows day-to-day. The downside is that glucagon is already so expensive that using it on a daily basis is unlikely. My sense is that this technology would not need to be nearly as robust as an insulin pump, as the indications would be to use the glucagon earlier than you would do an oral food treatment. If it doesnāt work; you can simply eat something instead.
a liquid, stable form of glucagon. A number have been developed over the years and many stalled in phase II/phase III due to funding issues. One (the G-pen) is still in development but we have no timelines or price tag on thisā¦they initially conceive of it as being akin to an epipen but with a shelf-stable lyophilized version of glucagon. You could conceivably put this in a pump and just use it with two pumps attached to your body, but ideally you want something designed for a pump or regular injections.
A faster-acting insulin that actually diffuses through tissue more quickly or ones that target the liver more directly.
The other arena where I think an open-source project could be really helpful is in purchasing the patents and rights to some of these earlier-phase technologies (or even later-phase) that got put on the backburner due to āfinancial considerations,ā making the patents open source and then allowing manufacturers to produce it for a small fee as long as its cost remains within some limit of the production costs. Iāve wondered whether thereās a way around requiring FDA regulation, and that seems like a long shot unless the products are not being sold. (Not sure what the rules are on donations).
Pushing these through clinical trials, or creating smarter, more tailored trials (for instance, I think Affrezza needs a really well-designed trial to convince doctors of its unique benefits) would potentially take some of these technologies gathering dust on shelves and turn them into viable open-source products.
For instance, itās just so obvious that an oral insulin would dramatically improve peopleās lives, but the development costs wonāt be made up in the increased sales (If Novo sells another insulin that then replaces the one theyāre selling, that may wind up being revenue neutral or negative, whereas selling someone Victoza on top of their insulin improves their bottom line).
Anyways, these are all pipe dreams. Someone with money needs to figure out how to set up these ideas and figure out the most promising tactics.
@Sam There is no way in the world I would ever return to lente and regular insulin. I would completely evaporate any savings I had to pay whatever price necessary to continue on analogs. If FIASP turns out as I expect it will, I will use it even if I have to pay full retail.
As @drbbennett had stated elsewhere, using NPH (or Lente) and regular was like being in prison.