I've been type 1 for over 30 years since I was a toddler. I could stand to lose a few pounds these days, but I am not fat, nor obese. Adjusting my diet would do very little to change the increasingly high amount I spend on insulin.
The cost of insulin over the last few years and as recently as the last few months has skyrocketed. Not just the fancy fast acting insulin, but even the regular stuff that you can buy over the counter without a prescription(R and NPH) has nearly quadrupled in the last 12 years. It's not an increase in manufacturing costs. It's price fixing by the two major players(Lilly and Novo).
You'd think that with Lilly significantly raising their prices a few months ago, that Novo Nordisk could make a killing, but no, they both did it at the same time. Funny how that worked out.
Type 1 for about 15 years now. A1C has always been fine (typically 6.2 - 6.4).
Recently I decided to get "back in shape". I'm 5-foot-8, and this meant going from ~170lbs to ~140lbs. I actually dropped it rather easily (just walking and calorie counting), and I've maintained that weight since (6 months so far).
The kicker? I cut my insulin usage by 40%. However that wasn't just because I was no longer eating excess calories, but tracked my macros to see what I was eating. General guidelines are 50/30/20 for calories from carbs/fat/protein. Before I tracked it, I was apparently 60/25/15 which was VERY surprising to me, as I didn't think I was eating that many carbs. Now I'm 45/30/25, and slowly edging towards 43/30/27.
Granted, high protein diets aren't cheap, so the costs largely balance out. However tracking what you eat may reveal that you're getting far more of your calories from carbohydrates than you think.
If you have a Walmart nearby they carry Novolin R for ~$24/10ml. It's still expensive, but better than the $120 or more for Humulin I was spending at Costco (and still better that the $300 charged at some places).
As I understand it, there's no way around type 1 diabetes, you just can't produce insulin, or at least can't produce enough, and therefore need to supplement it.
But if you eat no carbohydrates, would you really need much insulin?
I don't understand what the fuss is about type 2. The resistance is developed because there is too much insulin in the blood all the time, and the solution is to take even more insulin?! It seems a no brainer that the solution should be to cut sugar out of the blood stream at all costs and reverse the insulin resistance...
I have a relative that is type 1. A couple of years ago he went on a no carb diet and at xmas he was telling me that he now uses a lot less insulin and generally feels a lot better. He also lost some weight (he wasn't obese, either, but he now looks very trim).
I think the hardest thing for the American political system to grasp about our medical system is that spending more money is not the answer. We already spend 16% of GDP, about double what almost all other countries spend on health care and have worse outcomes.
I'm glad that there's some new thinking going on here that may lead to some movement. Unfortunately, all the incentives are aligned such that everyone who is making a ton of money off the system lobbies to make even more.
We don't have worse outcomes for the largest most serious illnesses, cancer and heart disease. The US medical system is top tier in those for one of the largest, most obese, generally unhealthy and diverse populations in the world. It's actually a miracle to have these kinds of outcomes.
The insurance system is itself a racket. Putting even more people into the insurance system only makes insurance companies richer, doesn't do much for the average American.
At the same time doctor's income is actually decreasing. So America has a lot of parasitic Capitalists adding little value but sucking billions of dollars out of the system. This sort of Capitalism does no one any good. A lot of that money is being sucked out by regulatory capture.
Spending more money will lead to yet more money being lost to the same parasites which will simply find ways of increasing their ability to leech money from the system.
>We already spend 16% of GDP, about double what almost all other countries spend on health care and have worse outcomes.
The medical system is not the primary influence on a population's health. It's probably about third behind public health systems (sewage, water, and food inspection) and the health habits of the population. You're never going to have a health system that can compensate for four hundred pound diabetics who didn't realize they were pregnant for six months.
I'm a biologist who works in the pharmaceutical industry. I like the idea of open source insulin as much as the next guy. But. I just took a look at their website and it's a complete joke, frankly. It's basically a high-school science experiment. The sort of thing that a single undergrad could do in a few days. Compared to the thousands of man-years required to produce and test a new pharmaceutical product.
I wish them luck, but c'mon. Biopharma is not IT where a smart kid can compete from his garage. It just isn't.
The NYTimes article says "the hackers hope to be able to demonstrate the technological feasibility" rather than manufacture a drug. But everyone knows that it's technically feasible -- the challenge (and cost) is in the doing.
One of my siblings is a major contributor to Nightscout, it's a great piece of open source software. The makers of the Dexcom software have been stonewalling their efforts, but at least that isn't killing the project. Hopefully something similar can be done for insulin, though that seems a lot more difficult.
> In much of Europe, insulin costs about a sixth of what it does here. That’s because the governments play the role of pharmacy benefit managers. They negotiate with the manufacturer directly and have been very effective at driving down prices. In the United States, we rely on the private sector and a free market for drug pricing.
Cartels are an emergent phenomenon[1] and it is in the interest of a fair market to not be "free market," whenever it leads to rackets.
How do you define "minor"? These insulins have dramatically different serum half lives (for example there are fast acting ones for postprandial administration, others that are optimized for pumps, etc) and so there is a clear pharmacological difference. Moreover, discovering these variants is nontrivial, as each insulin must be checked against igf-1 receptor cross reactivity, lest it become teratogenic. Making matters worse, the exact binding of insulin and igf-1 to their receptors is not known making this endeavor especially difficult to predict.
What is not clear is whether these modifications are an over optimization over "the original". For each patient the cost/benefit calculation will be different and based on many variables.
One thing I don't understand about drug patents: how does evergreening work? Doesn't the original patent still expire, allowing anyone who wants to make the old version?
There are so many people on both insulin and government health insurance that it's probably in the taxpayers' interest to build an insulin factory to supply the low-end.
I had a similar thought a few years ago that it would have been in the government's interest to buy Pharmasset when they sold for $11B to Gilead based on the future potential of Sovaldi (the infamous $1,000/pill, 12-week treatment for Hepatitis C). The government through Medicare / Medicaid is currently spending upwards of $4B/year on the drug and private insurers and international buyers are spending billions more. It would've been an absolute net-win for humanity had the USGov or someone else just bought the company rather than giving Gilead billions in annual profits.
That won't happen, the government is the one preventing it because of the patent restrictions. If the patents were limited then companies would spring up instantly to manufacture it cheaply.
Or just enter into a long term contract with a generic manufacturer (hopefully striking a balance between a longer term that ensured the manufacturer covered their fixed costs and a shorter term that would invite more competition).
in France, in UK, and probably rest of Europe
people with Type 1 and 2 diabetes are taken in charge 100%
that means whatever amount of insulin you need, you get it for free
and it's not only the insulin, it's also all the rest: test strips, glycemic reader, etc.
I'm pretty sure the article is wrong about
"had Type 2 diabetes for over 30 years. She takes several injections of insulin each day."
this more describe Type 1 situation
anyway, I'm pretty sure the price of insulin went up also in Europe, except the government paid the bill, not the patient, a bit more civilised but still the problem stay the same:
big pharma corporation are abusing the situation and make money from it, it is disgusting and criminal
Type 2 diabetics often progress to insulin treatment as their pancreas becomes exhausted and ceases proper function.
The low insulin sensitivity in type 2 means the pancreas produces large amounts of insulin in a futile attempt to reduce blood sugar. Initial treatments focus on insulin sensitizing agents to try and assist the natural insulin to be effective. Despite the amazing capabilities of the body, it eventually becomes too much and people have to start insulin replacement therapy at that point.
If you've had type 2 diabetes for more than 30 years, you may well be on insulin by now. Also, blaming big pharma for making people pay for insulin makes no sense. You can argue that they're charging too much, certainly, or that government should step in to pay for it. But arguing that they shouldn't make a profit? That's like blaming farmers for making a profit from farming. We all need food to live, but it's not their job to give me free food.
Generally speaking companies "extend" their patent by making a slight tweak to get a new patent. But that doesn't stop their old patent from expiring. And the old formula from becoming open to a generic.
So why aren't there generic versions of old formulations? Who cares if it doesn't have the latest tweak? The complain about such tweaks is that their minor and unimportant. Meaning the previous version should be just fine.
I have Crohn's Disease. Up until a few years ago, I took Asacol for this. This is one of a whole class of drugs based on the active ingredient "mesalamine": Asacol is specialized in that it's got a coating that keeps it from dissolving until it gets to the colon. Somebody found that this coating (notice: not the drug itself, just an enteric coating) might be a risk for pregnant mothers - something that I will never be. So they stopped making Asacol, and came out with a new "Asacol HD", which is still good old-fashioned mesalamine, but with a slightly different enteric coating - and with a brand new patent.
Although I don't have any evidence to support the idea, it seems suspicious that this revelation about the coating being questionable during pregnancy, came to light not very long before the expiration of the patent on original Asacol.
So there exists a small group of patients (pregnant moms) who might have had trouble with original-packaging Asacol. Rather than putting these patients on other mesalamine meds (like Pentasa or Delzicol) for 9 months, that was parlayed into a need to discontinue the entire Asacol product and come out with a new one.
In this case, it seems that a desire (or a pretense) to make something safe for all sub-groups, even those that are small and easily segmented, becomes the engine for renewing the patent, and thus keeping generics out of the market.
Another data point: there are no generic albuterol inhalers on the market right now. Switching from CFC to HFA despite literally only pharmaceutical companies being concerned about CFC usage in inhalers meant new patents all around with no more generics due to the CFC ban. I don't even remember the last time any of my inhalers, actually, was available as generic - switching the propellant/delivery mechanism seems to be a great evergreening tactic. There's gotta be a lot of money flowing around somewhere anyway regardless of patent/market exclusivity extension and expiration - there's also the fun situation where I get prescribed one of brand-only [Advair, Symbicort, Dulera] inhalers ~solely~ based on which drug company cut a better deal with my insurance company at that point.
There are some happy stories with generics, though! I save a decent chunk of money buying OTC cetirizine over UCB/Sanofi's chiral switch Xyzal.
I am tempted to believe that the pharma companies are more interested in keeping their recurring revenues from diabetics than find a one time cure.
Here in India, the medicines and tools for a diabetic (particulary IDDM) is still prohibitively expensive for most people who have it. The prices of insulins and testing strips have increased by 10% or so many times in the past couple of years. Things like CGMS, insulin pumps are not affordable even to well-off people like me.
There has always been news of research from various government and government aided organizations towards the development of low cost testing strips (at about Rs. 5 per strip compared to Rs. 17 and above for the existing products) but nothing has come out as a product. What's worse is an unknown healthcare company has acquired the technology from ICMR (Indian Council of Medical Research) a year back and till now their only product is a low cost sanitary napkin. Wouldn't be surprised of the involvement of the big pharma companies in the delay.
All this said, at least India doesn't have an insurance system like in the US which has pushed up the prices repeatedly to help the insurance companies (imho an unwanted middleman in most cases) make more and more money.
Can anyone explain me the evergreening - even if new patent is granted for new molecule the old molecule should be free. So why is nobody producing them?
It depends. Sometimes it's simply more profitable to produce something else. Sometimes the market is too small to justify the bioequivalence studies. Sometimes the FDA mysteriously changes its mind on the safety of a drug the same day the patent expires [1].
According to the article, Pharmacy Benefit Managers are as much to blame for the increasing costs of drugs as the manufacturers. I suspect that's partly true, but I also suspect the "percentage of blame" is being ignored here.
A model that is more direct from business to customer sounds like it would eliminate costs. Too many people trying to put themselves in the middle and make a cut.
No offense, but the article got PBMs entirely wrong.
Any savings from rebates is typically passed back to the one paying. In fact, it would be odd if an insurance company didn't have that in their contract.
I'd say PBMs have done a ton on keeping drug costs down. Hell, look at HCV! Express Scripts cut a deal with Abbvie on their new HCV drug and excluded Solvadi and Harvoni from their formulary.
What happened? Gilead came out and offered a 20-30% discount on their drug to pretty much every other PBM and insurance company.
Who cares about the percentage of blame? I think to start reducing costs in our health care system we have to fix every problem we see.
Theoretically, the entity exists to work on behalf of the patient. A simple fix here would be to require them to pass any rebates they receive on to patients. That the rebates would go away under such a requirement is, uh, fine.
At least in some states you can buy a form of insulin over the counter. It is an older formulation and apparently it is not the easiest thing to DYI figure out the correct dose. NPR had a report on it a while back. http://www.npr.org/sections/health-shots/2015/12/14/45904732...
A fair enough statement:
"The broader availability of [over-the-counter] insulin allows patients with diabetes to obtain it "quickly in urgent situations, without delays," the FDA says, and is intended to increase patient safety."
However, it seems like there are no visible protocols in place to control use in non-emergency situations like with the patient mentioned in the NYTimes article. That's certainly risky for poorer diabetics who don't necessarily know better, or are desperate enough financially to risk the long-term consequences.
"This is true, in no small part, because the big three have cleverly extended the lives of their patents, making incremental “improvements” to their insulin."
Possibly dumb question: If the improvements really are that minor, what's stopping other companies from using the original, "unimproved" formulation in a generic? How would disallowing the "improved" patents change the situation?
> In the United States, just three pharmaceutical giants hold patents that allow them to manufacture insulin
How does this work with patent lifetimes being 25 years?
Anyway, as the article says, in countries where chronic medical conditions aren't seen as an opportunity for price-gouging, it costs much less or is free to the user.
[+] [-] glenk|10 years ago|reply
The cost of insulin over the last few years and as recently as the last few months has skyrocketed. Not just the fancy fast acting insulin, but even the regular stuff that you can buy over the counter without a prescription(R and NPH) has nearly quadrupled in the last 12 years. It's not an increase in manufacturing costs. It's price fixing by the two major players(Lilly and Novo).
You'd think that with Lilly significantly raising their prices a few months ago, that Novo Nordisk could make a killing, but no, they both did it at the same time. Funny how that worked out.
[+] [-] MrFoof|10 years ago|reply
Recently I decided to get "back in shape". I'm 5-foot-8, and this meant going from ~170lbs to ~140lbs. I actually dropped it rather easily (just walking and calorie counting), and I've maintained that weight since (6 months so far).
The kicker? I cut my insulin usage by 40%. However that wasn't just because I was no longer eating excess calories, but tracked my macros to see what I was eating. General guidelines are 50/30/20 for calories from carbs/fat/protein. Before I tracked it, I was apparently 60/25/15 which was VERY surprising to me, as I didn't think I was eating that many carbs. Now I'm 45/30/25, and slowly edging towards 43/30/27.
Granted, high protein diets aren't cheap, so the costs largely balance out. However tracking what you eat may reveal that you're getting far more of your calories from carbohydrates than you think.
[+] [-] bobhaigler|10 years ago|reply
[+] [-] torrent-of-ions|10 years ago|reply
But if you eat no carbohydrates, would you really need much insulin?
I don't understand what the fuss is about type 2. The resistance is developed because there is too much insulin in the blood all the time, and the solution is to take even more insulin?! It seems a no brainer that the solution should be to cut sugar out of the blood stream at all costs and reverse the insulin resistance...
[+] [-] e40|10 years ago|reply
Have you tried something like that?
[+] [-] narrator|10 years ago|reply
I'm glad that there's some new thinking going on here that may lead to some movement. Unfortunately, all the incentives are aligned such that everyone who is making a ton of money off the system lobbies to make even more.
[+] [-] merpnderp|10 years ago|reply
[+] [-] xlm1717|10 years ago|reply
[+] [-] x5n1|10 years ago|reply
Spending more money will lead to yet more money being lost to the same parasites which will simply find ways of increasing their ability to leech money from the system.
[+] [-] gozur88|10 years ago|reply
The medical system is not the primary influence on a population's health. It's probably about third behind public health systems (sewage, water, and food inspection) and the health habits of the population. You're never going to have a health system that can compensate for four hundred pound diabetics who didn't realize they were pregnant for six months.
[+] [-] dluan|10 years ago|reply
http://www.nytimes.com/2016/02/23/health/a-do-it-yourself-re...
Featuring the Open Insulin project. Many of the supporters of that project came from HN.
[+] [-] roadnottaken|10 years ago|reply
I wish them luck, but c'mon. Biopharma is not IT where a smart kid can compete from his garage. It just isn't.
The NYTimes article says "the hackers hope to be able to demonstrate the technological feasibility" rather than manufacture a drug. But everyone knows that it's technically feasible -- the challenge (and cost) is in the doing.
[+] [-] arafa|10 years ago|reply
[+] [-] simonsarris|10 years ago|reply
Cartels are an emergent phenomenon[1] and it is in the interest of a fair market to not be "free market," whenever it leads to rackets.
[1] https://news.ycombinator.com/item?id=3494224
[+] [-] ecobiker|10 years ago|reply
http://www.nature.com/news/indian-court-rejects-novartis-pat...
[+] [-] dnautics|10 years ago|reply
What is not clear is whether these modifications are an over optimization over "the original". For each patient the cost/benefit calculation will be different and based on many variables.
[+] [-] jemfinch|10 years ago|reply
[+] [-] brandonmenc|10 years ago|reply
[+] [-] mikeyouse|10 years ago|reply
[+] [-] bcheung|10 years ago|reply
[+] [-] maxerickson|10 years ago|reply
[+] [-] zwetan|10 years ago|reply
that means whatever amount of insulin you need, you get it for free
and it's not only the insulin, it's also all the rest: test strips, glycemic reader, etc.
I'm pretty sure the article is wrong about
"had Type 2 diabetes for over 30 years. She takes several injections of insulin each day."
this more describe Type 1 situation
anyway, I'm pretty sure the price of insulin went up also in Europe, except the government paid the bill, not the patient, a bit more civilised but still the problem stay the same:
big pharma corporation are abusing the situation and make money from it, it is disgusting and criminal
first, about the patent and why there is no generic insulin, read http://www.medscape.com/viewarticle/841669
second, most people are uneducated about diabetes, they think it concern only fat people or other countries, and other BS like that
nope, it is worldwide major public health problem, many studies show the amount of people with diabetes rising , for ex
http://www.nytimes.com/2015/06/08/health/research/global-dia...
"reported a 45 percent rise in the prevalence of diabetes worldwide from 1990 to 2013"
finally, why it is disgusting and criminal for pharma corp to make ppl pay for insulin ?
it as simple as that: if you don't take insulin you die, period.
It's not curable, there is no alternative diet, nothing, zilch, nada
and those big pharma corporation they made a business to profit from that, and when profit is not high enough, simple, raise the price.
[+] [-] pascalmemories|10 years ago|reply
The low insulin sensitivity in type 2 means the pancreas produces large amounts of insulin in a futile attempt to reduce blood sugar. Initial treatments focus on insulin sensitizing agents to try and assist the natural insulin to be effective. Despite the amazing capabilities of the body, it eventually becomes too much and people have to start insulin replacement therapy at that point.
[+] [-] ksenzee|10 years ago|reply
[+] [-] DrScump|10 years ago|reply
[+] [-] forrestthewoods|10 years ago|reply
So why aren't there generic versions of old formulations? Who cares if it doesn't have the latest tweak? The complain about such tweaks is that their minor and unimportant. Meaning the previous version should be just fine.
[+] [-] CWuestefeld|10 years ago|reply
I have Crohn's Disease. Up until a few years ago, I took Asacol for this. This is one of a whole class of drugs based on the active ingredient "mesalamine": Asacol is specialized in that it's got a coating that keeps it from dissolving until it gets to the colon. Somebody found that this coating (notice: not the drug itself, just an enteric coating) might be a risk for pregnant mothers - something that I will never be. So they stopped making Asacol, and came out with a new "Asacol HD", which is still good old-fashioned mesalamine, but with a slightly different enteric coating - and with a brand new patent.
Although I don't have any evidence to support the idea, it seems suspicious that this revelation about the coating being questionable during pregnancy, came to light not very long before the expiration of the patent on original Asacol.
So there exists a small group of patients (pregnant moms) who might have had trouble with original-packaging Asacol. Rather than putting these patients on other mesalamine meds (like Pentasa or Delzicol) for 9 months, that was parlayed into a need to discontinue the entire Asacol product and come out with a new one.
In this case, it seems that a desire (or a pretense) to make something safe for all sub-groups, even those that are small and easily segmented, becomes the engine for renewing the patent, and thus keeping generics out of the market.
[+] [-] silencio|10 years ago|reply
There are some happy stories with generics, though! I save a decent chunk of money buying OTC cetirizine over UCB/Sanofi's chiral switch Xyzal.
[+] [-] lgp171188|10 years ago|reply
Here in India, the medicines and tools for a diabetic (particulary IDDM) is still prohibitively expensive for most people who have it. The prices of insulins and testing strips have increased by 10% or so many times in the past couple of years. Things like CGMS, insulin pumps are not affordable even to well-off people like me.
There has always been news of research from various government and government aided organizations towards the development of low cost testing strips (at about Rs. 5 per strip compared to Rs. 17 and above for the existing products) but nothing has come out as a product. What's worse is an unknown healthcare company has acquired the technology from ICMR (Indian Council of Medical Research) a year back and till now their only product is a low cost sanitary napkin. Wouldn't be surprised of the involvement of the big pharma companies in the delay.
All this said, at least India doesn't have an insurance system like in the US which has pushed up the prices repeatedly to help the insurance companies (imho an unwanted middleman in most cases) make more and more money.
I am not very optimistic about the future.
[+] [-] feld|10 years ago|reply
[+] [-] venomsnake|10 years ago|reply
[+] [-] 0xcde4c3db|10 years ago|reply
[1] http://www.npr.org/sections/health-shots/2013/04/17/17760239...
[+] [-] mschuster91|10 years ago|reply
Too much profit is to be made.
[+] [-] EwanG|10 years ago|reply
[+] [-] bcheung|10 years ago|reply
[+] [-] refurb|10 years ago|reply
Any savings from rebates is typically passed back to the one paying. In fact, it would be odd if an insurance company didn't have that in their contract.
I'd say PBMs have done a ton on keeping drug costs down. Hell, look at HCV! Express Scripts cut a deal with Abbvie on their new HCV drug and excluded Solvadi and Harvoni from their formulary.
What happened? Gilead came out and offered a 20-30% discount on their drug to pretty much every other PBM and insurance company.
[+] [-] maxerickson|10 years ago|reply
Theoretically, the entity exists to work on behalf of the patient. A simple fix here would be to require them to pass any rebates they receive on to patients. That the rebates would go away under such a requirement is, uh, fine.
[+] [-] adenner|10 years ago|reply
[+] [-] skyhatch1|10 years ago|reply
However, it seems like there are no visible protocols in place to control use in non-emergency situations like with the patient mentioned in the NYTimes article. That's certainly risky for poorer diabetics who don't necessarily know better, or are desperate enough financially to risk the long-term consequences.
[+] [-] unknown|10 years ago|reply
[deleted]
[+] [-] cfcef|10 years ago|reply
[+] [-] sparky_z|10 years ago|reply
Possibly dumb question: If the improvements really are that minor, what's stopping other companies from using the original, "unimproved" formulation in a generic? How would disallowing the "improved" patents change the situation?
[+] [-] dragonwriter|10 years ago|reply
The fact that doctors won't prescribe the unimproved formulation when the improved one is available.
[+] [-] pjc50|10 years ago|reply
> In the United States, just three pharmaceutical giants hold patents that allow them to manufacture insulin
How does this work with patent lifetimes being 25 years?
Anyway, as the article says, in countries where chronic medical conditions aren't seen as an opportunity for price-gouging, it costs much less or is free to the user.
[+] [-] shade23|10 years ago|reply
[1]:https://experiment.com/projects/open-insulin
[+] [-] tim333|10 years ago|reply
Actrapid 40 iu, 10ml at Rs. 145, or about US$2
so the lack of availability would seem to be down to regulatory / patent bs.
There should be some way to alter the laws in the US to favour the US people rather than the billionaires. Saunders?
[+] [-] patmcguire|10 years ago|reply
F. Hoffmann-La Roche AG is their parent now, not named.