JDRF respond to NYT article

[bev]

Hi all,

This was posted on CWD - thought you may be interested as it appears to trivialise Type 1I am so relieved we have the NHS (for now anyway)as the costs in US are huge! JDRF's reply to the article is excellent🙂Bev

http://www.nytimes.com/2014/04/06/h...dvances-can-mean-big-jumps-in-bills.html?_r=0







JDRF Response re: April 5, 2014 NYT Article
“Even Small Medical Advances Can Mean Big Jumps in Bills”

Official Statement

On behalf of everyone affected by type 1 diabetes (T1D), JDRF is outraged by the recent article in the New York Time trivializing the benefit of medical advances for people with T1D. Rather than being “high priced gadgets and disposable accouterments” as the article defines them, these lifesaving advances are indeed just that – life saving for individuals with T1D. A recent study documented such advances helped add roughly 15 years of life for those diagnosed with T1D. The New York Times story suggests that some medical advances for T1D that could mean a longer life and better health for some people with T1D are not worth the cost – a premise JDRF completely rejects. JDRF supports continued innovation of new medical advances to further improve the lives of people with T1D and to ultimately cure this disease. Such step-wise advances, big and small, are how we will ultimately create a world without T1D. We need a health care policy that supports innovative research on new advances for people with T1D and one that makes these advances available to every person who needs them.

Talking Points

· JDRF, as the largest non-profit dedicated to fostering T1D research, is currently investing over $500 million dollars towards groundbreaking research to aggressively treat and, hopefully, one day to cure this disease.
· This article is offensive to anyone touched by T1D because it trivializes the lifesaving nature of medical advances for people with T1D.
· Long term studies by the National Institutes of Health have found intensive control of blood sugar lowers the risk of heart attacks, strokes, blindness, and kidney disease in individuals with T1D. By preventing these costly complications, improved glucose control can generate considerable savings to society, For example, a recent study by Winn et. al., found that intensive control of blood glucose levels in those with T1D would, at the ten year mark, result in estimated savings to Medicare in the range of $450-810 million. By the 25 year mark, these savings to Medicare would reach the $5.9 – 10.4 billion for T1D.
· A JDRF-funded study of CGMs published in the New England Journal of Medicine demonstrated the value of using CGMs to achieve better glucose control. Such data support the use and reimbursement of medical advances like this for people with T1D.
· Research has documented that people diagnosed with T1D in the modern era of tools and care live roughly 15 years longer than those diagnosed earlier – advances matter to people with T1D.
· Every medical advance, big and small, brings us one step closer to a world without T1D.
· JDRF rejects the premise that some advances in T1D care not worth the benefit to people with T1D – every step is valuable because their lives are on the line every day.
· This shortsighted approach to understanding the needs of those with T1D – to truly have ready access to innovative advances to treat T1D until a cure is found – is unacceptable and ill-informed.
· We need for all dedicated to addressing the unmet medical needs in T1D to have the ability to recoup costs to allow for further investment in groundbreaking research.
· JDRF supports a health care policy that supports innovative research into better treatments and a cure for T1D.
· JDRF supports a health care policy that also makes medical advances available to everyone with T1D who can benefit from them.
· Read the Times story and post a comment that your diabetes management devices are #NotJustAGadget.

 

[Northerner]

Another journalist who fails to see the longer term picture, good response from JDRF - hope the NYT prints an apology.

 

[DeusXM]

I'm not sure I agree with your's or JDRF's conclusions.

My reading of the article didn't suggest to me at all that T1 was being trivialised. Rather, it seemed to me like the article was pointing out that because T1 is not especially prevalent, we are at the whims of manufacturers who are able to treat us as cash cows by creating devices which we may or may not want or need. There is a world of difference between something like a CGMS, and charging an extra $100 for a meter that talks to you.

I saw this article as simply pointing out that not every device developed for 'us' actually has our needs in mind, and calls for people to think more critically and not just unconditionally welcome every new gadget or gizmo that is often foisted upon us with very little done to find out what we actually want.

The only issue I really have with the article is that it fails to make the connection that every penny spent on developing devices that may or may not be useful to treat diabetes is a penny taken away from developing a cure. There is no talk at all about how the high profit margins from these devices could/should be reinvested in cure development.

After all, the article makes the point that test strips are charged at $1.50 each but cost pennies to make. Why isn't JDRF getting angry at that? As their response points out, regular testing makes a massive difference to outcomes. So logically, you'd expect them to welcome anything that stokes a sense of outrage and how we are ripped off because we are vulnerable.

Instead, they go and shoot the messenger! Hooray, great, someone publicly points out how pharmaceutical companies pricing actively encourages poorer treatment outcomes...and the organisation that's supposed to protect us tells them to shut up! How many times have T2s here been denied strips because their local PCT deems them too expensive? Is no-one else here seeing the connection?

Frankly I'm very shocked by JDRF's response. I don't usually go for conspiracies but their statement reads very much like one of their 'corporate partners' probably didn't appreciate their test strips or insulins being described as overpriced and 'suggested' that JDRF might want to say something in the interests of mutual support etc.

 

[Andy HB]

After all, the article makes the point that test strips are charged at $1.50 each but cost pennies to make.

That is something I have always felt very uncomfortable about. It is the only reason (despite what the doctors say) why test strips are not more widely available.

I also have to add, that I think I have to agree with DeusXM. I think the real area for anger is the apparent excessive cost attached to these devices and treatments. The article itself seemed very balanced. Perhaps there were aspects of it which could have been clearer for people like me who are not as familiar with the subject as others though.

I was going to agree about the point the article made about talking meters, but then realised that there is probably a very good reason why these are, in fact, very useful for some people. After all, loss of sight is not an uncommon side-effect. So the article did make at least one basic error (I think I'm back-tracking a little!).

 

[Redkite]

I have read both the original article and JDRF's reply. The article was by no means the worst I have read (at least it seemed to know what type 1 is!). It did also make some valid points about the huge profit margins of greedy pharmaceutical companies.

I think JDRF was right to challenge it though (perhaps "outraged" was a bit OTT) - because there was an implication that "expensive" devices (pumps, CGMs) etc. are a luxury that is getting in the way of the search for a cure, whereas in actual fact a cure (or more accurately a permanent solution) is most likely to be found in the artificial pancreas which is being developed from pump/CGM technology. Also, to put ourselves in the shoes of a US person with type 1, the last thing they need in the current medical insurance climate is articles arguing that state-of-the-art treatments are "too expensive to be worth it", which is what the article implies. Pumps are the closest approximation to a working pancreas, and hence the best chance of normal life expectancy and good health for a person with type 1, so it would be devastating if they were unavailable to people with normal medical insurance.

 

[HelenM]

The other point the article was making was the exhorbitant cost of both devices and drugs were in the US.
My glucagon costs the French Health care service about 20 euros and an insulin vial not much more, compare that to the quoted prices (272.72 $ and 200$ ) in the article.

 

[bev]

I have read both the original article and JDRF's reply. The article was by no means the worst I have read (at least it seemed to know what type 1 is!). It did also make some valid points about the huge profit margins of greedy pharmaceutical companies.

I think JDRF was right to challenge it though (perhaps "outraged" was a bit OTT) - because there was an implication that "expensive" devices (pumps, CGMs) etc. are a luxury that is getting in the way of the search for a cure, whereas in actual fact a cure (or more accurately a permanent solution) is most likely to be found in the artificial pancreas which is being developed from pump/CGM technology. Also, to put ourselves in the shoes of a US person with type 1, the last thing they need in the current medical insurance climate is articles arguing that state-of-the-art treatments are "too expensive to be worth it", which is what the article implies. Pumps are the closest approximation to a working pancreas, and hence the best chance of normal life expectancy and good health for a person with type 1, so it would be devastating if they were unavailable to people with normal medical insurance.

Hi Redkite,

Precisely! I dont need to post my thoughts as they echo yours entirelyBev

 

[DeusXM]

there was an implication that "expensive" devices (pumps, CGMs) etc. are a luxury that is getting in the way of the search for a cure, whereas in actual fact a cure (or more accurately a permanent solution) is most likely to be found in the artificial pancreas which is being developed from pump/CGM technology.

Actually, I wouldn't disagree with that conclusion from the article.

I am not disputing that pumps and CGMS have their place. Whether they will form a permanent solution though is open to question, particularly as we've already found biological methods of blocking beta cell destruction and promoting beta cell growth using medications already approved for use independently in humans - human trials of both drugs at the same time are pending and I would wager they're having trouble getting funds.

A CGMS and pump are 'useful', certainly, but I would suggest the difference they bring to overall quality of treatment isn't necessarily worth the considerable price premium they come with. And it's not just me that agrees with this assessment. You say it would be devastating if pumps were unavailable to people with normal medical insurance. Guess what? They ARE unavailable to people with normal medical insurance. Pumps are by an overwhelming margin a minority treatment for people on insulin treatment. For every 1 person on a pump, there are 9 of us still making do with injections because the NHS cannot justify the cost benefit of paying for us to all have pumps.

Those of us on injections also get punished for when we do well. My last A1C, using pen injections, was 43/6.1. How on earth am I supposed to make a case that I would benefit from a pump? Or, for that matter, how on earth are people supposed to make a generalised case that pumps are the only way of getting good control when people seem rather capable of doing it with cheap ol' pens? Obivously yes, not everyone will get these results and there are some people out there who do benefit from pumps and CGMS. But then by definition, that means that pumps and CGMS are not essential and potentially, luxury treatments.

The other issue that this article doesn't tackle is the idea of diminishing costs. We've had pumps now for something like 30 years in one shape or another. They're still a fortune.

By contrast, look at the price of a Blu-ray player today compared with a VHS player from 1984, relative to income. The Blu-ray player is a fraction of the cost of the VHS and a quantum leap ahead in terms of technology. Yet pumps have only made moderate performance gains in the past decade and still cost pretty much what they've always done. I know it's not a fair comparison as we're dealing with an entirely different market and strategy, but the point is that pump manufacturers charge for pumps what they believe they can force people to pay.

There is simply no reason why an insulin pump should cost what it does and they could easily reduce the cost substantially and make a decent profit. But because no-one calls them on this, and because people perpetuate the idea that pumps are a 'mission-critical' treatment for diabetes, there will never be a movement on cost and the majority of us will never get to have one ourselves - and at the same time, we're also being held back from finding a cure as more money is diverted to pumps.

THAT'S what I think needs to be tackled here and I'm just sad that JDRF seem more interested in protecting a market for manufacturers rather than working on getting us a better deal.

 

[Redkite]

You say it would be devastating if pumps were unavailable to people with normal medical insurance. Guess what? They ARE unavailable to people with normal medical insurance. Pumps are by an overwhelming margin a minority treatment for people on insulin treatment. For every 1 person on a pump, there are 9 of us still making do with injections because the NHS cannot justify the cost benefit of paying for us to all have pumps.

But this was a US article, and it says over a third of all people with type 1 over there are currently on pumps - this is also the treatment of choice for health professionals who are themselves type 1....

Those of us on injections also get punished for when we do well. My last A1C, using pen injections, was 43/6.1. How on earth am I supposed to make a case that I would benefit from a pump?

If you feel you would benefit from a pump, we can help you make a case that fits the NICE guidelines 🙂. Usually for people who are achieving a good Hba1c, the main criterion for asking for a pump would be that the Hba1c is only achieved at the expense of frequent hypoglycaemia or the fear of hypoglycaemia (such that this affects the quality of one's life)


There is simply no reason why an insulin pump should cost what it does and they could easily reduce the cost substantially and make a decent profit.

Absolutely agree - they are greedy so-and-so' s, and as well a lower price for the devices, I'm sure they could extend the life in-warranty beyond the current market standard of 4 years. But perhaps a more widespread customer base might bring these things....

THAT'S what I think needs to be tackled here and I'm just sad that JDRF seem more interested in protecting a market for manufacturers rather than working on getting us a better deal.

JDRF know full well that their core supporters have many pump users among them, and particularly in the US with all the fiasco surrounding the introduction of Obamacare, these people are worried.