They say you can’t put a price on a life. Well, there is something morally ambiguous about it, but it happens all the time. Sometimes, that pricing hits too close to home for comfort, in this case, when talking about the price of a life with diabetes.
Our son has diabetes
Before I go into the cold hard numbers let’s take a step back. Three months ago our son was diagnosed with Type 1 Diabetes. For those who don’t know, Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone people need to get energy from food. T1D strikes both children and adults at any age and suddenly. Its onset has nothing to do with diet or lifestyle. There is currently nothing you can do to prevent it, and there is no cure.
As a newly diagnosed family we were put in touch with resources like the JDRF and people nearby who go or have gone through the same. There seemed to be a lot of hope going around. I would hear things like “Type 1 Diabetes is a horrible disease but today is the best time to have it” because of all the medical advances. There’s even talk about a cure in the possible near future. So our son has to deal with this, but hopefully not forever. I, as a father of a t1d child, try to stay hopeful that there will be a cure before my son will hit college.
I try to keep up with the research and there is a lot of it going on: nano tubes that emit light based on glucose levels (wouldn’t it be cool if the Apple Watch could read that), artificial pancreas, successful transplants of islet cells that produce insulin and smart insulin.
It was digging into this smart insulin a little deeper that I had the rug pulled from under me.
The Half-billion-dollar idea
The idea of smart insulin is great. You inject a patient once a day with this new concoction (as opposed to the 5 times per day our son does now) and it will release/activate insulin as it encounters sugars in the blood. It could make thing a lot less complicated for T1D patients that need to inject insulin for each meal and need in inject more for additional corrections. I hope my son will be able to use it one day. But when googling for the term smart insulin, I came across this article: The half-billion-dollar idea.
Initial thought: So what, why shouldn’t they be rewarded. Reading further into the article my blood somewhat chilled.
The article talks about how a drug was developed, a drug that is desperately needed by close to one and half million Type 1 Diabetes patients in America alone. The entire piece was about how it was, licensed, sold, made and stands to make huge profits for the creators in the future. It talks about how the company, founded to develop this drug, made sure all its stake holders would be handsomely rewarded, should it sell. It talks about how the product deliberately was kept from completion as part of a strategy to sell at just the right time. And it was sold for no less than half a billion dollars.
In the entire article, not a single mention of what this could mean to all the T1D patients out there. Way to go MIT, maybe your motto of “Mens et manus” (hand and mind) should be changed to “Mens et manus et Moneta” (and money).
Big Business
I’m not naive, I know business is there to make money for its stakeholders , but to see it in such cold terms and having it hit so close to home does make this feel wrong.
Had this article come from the Mercks and Pfizers of the world it would have stung less as it would be expected. Coming from a place like MIT, a place that’s supposed to shape the great minds of our next generation really makes it sting.
Diabetes is HUGE business in this country. The million and a half Type 1 Diabetes patients is just a small group compared to the almost 30 million patients with Type 2 Diabetes. Many Type 2 Diabetes patients will end up using the same medications and devices needed for Type 1 Diabetes. We are talking about 10 percent of the population!! Human capital takes on a whole new meaning.
After the smart insulin blueprints were sold to Merck it wasn’t heard of for 3 years. I wonder if this has anything to do with the fact that Merck makes lots of money on other products to keep diabetes in check (Januvia brought in about $6 billion in 2014). Who knows? Merck did take it into clinical trials and results are pending. The re-branding to MK-2640 tells me it won’t come to market anytime soon.
Capitalism gone awry
Yes, the irony. Capitalism is what created my wealth and I gladly made it serve me for my goals. Now however, it is crushing my hope of finding a cure to Type 1 Diabetes. Demand and supply don’t really apply when much more profitable supplies are available. Even less so, when it means the new supply will eliminate more profitable demand.
Let’s look a little closer at cold hard numbers I promised earlier. Our son is 6 years old. Diabetes is a crushing disease but one you can live with for a long time as long as you stick to the proper regimen. Our son like anyone else can potentially live up to 90 if not longer, that is the good news.
The bad news: the cost (for us/insurance/the tax payer, revenues for others) is staggering. looking at the basic needs:
- Humalog (multiple daily injections of insulin to process food): $4,800.00 annually.
- Lantis (a 24 hour lasting insulin to keep him alive): $1,600.00 annually.
- Test strips (to check his blood sugar at least 5 times a day): $1,496.00 annually.
- Glucagon (in case he goes into hypoglycemic shock): $250.00 annually.
- Needles/syringes (needed to inject the various insulins): $420.00 annually.
- Doctor visits (endocrinologist checkups at least 4 times a year): $1,416.00 annually.
As of today Leo will be receiving a continuous glucose meter which is absolutely great as it measures his sugar every 5 minutes. There will be bells and whistles going of whenever his glucose levels get too high or too low. The peace of mind, especially when your child sleeps through the worst of it, is almost priceless. The cost of these (retail).
- Transmitter (one every 3 months): $2,460.00 annually.
- Sensors: (one per week): $8,772.00 annually.
- Receiver: $1,100.00
When I add it all up, should our son live to be 80 years old, his daily care, barring any cure adds up to $1,697,800.00. That is not taking into consideration any inflation. If I add meager inflation of 2.5% we’re actually looking at $4,428,531.00 (or thereabouts).
Even if they could cure him for let’s say $100,000, why would they? The industry would walk away from some 4.5 million future revenues. A cured patient is bad for business.
All of what I tell you here of course doesn’t apply to just Type 1 Diabetes. There are other families struck by different diseases wondering the same. Most other diseases don’t tend to last as long as Type 1 Diabetes though. The life expectancy of a Type 1 Diabetes patient is 11 to 13 years shorter but improving as new medications/treatments becomes available.
Still hopeful
I’m a bit skeptical a cure will come from within the US. It’s not because the skills/knowledge isn’t there. I’ll proudly admit that most innovation still comes from this great country. I do think monetary interests will stand in the way of any cure. Oddly there seem to be several powers in play that are at odds: the pharmaceuticals standing to make gobs of money versus the insurance industry standing to carry the cost. What I don’t know is what types of under-the-table deals are made between them, along with some government involvement/spending that completely complicates matters.
Luckily, there is lots of research and lots of smart people in the rest of the world as well. Places where quarterly profits don’t outweigh the greater good (yet). The research community here in the States works closely with researchers elsewhere. I still believe that at the root of all medical research there are dedicated people eager to get actual results. Results effecting lives, not wallets. They will find the cure.
If it means we’ll have to make a trip to the Netherlands to get it I won’t complain. It would be better though, if it were available to all.
Wow, and you’re not alone with T1D or medical issues that –could– be solved except that its more money to the manufacturer if they don’t. That’s sad. I sent your article to a cousin who is also the parent of a T1D child.
Sad but true, I do hope I won’t crush the hopes of your cousin. Like I said in the end, I still have some hope good will conquer greed.
As I noted previously, I say again, thanks for sharing your story, my friend.
“Yes, the irony. Capitalism is what created my wealth and I gladly made it serve me for my goals. ”
I know exactly what you mean. While I have been able to forge an enviable path for my family, I do believe capitalism has gone off the tracks in so many ways. For me, income and wealth inequality come to mind.
As always, best of luck to you and yours.
Thank you. Yes, I really haven’t touched on wealth inequality in this piece. I did mention that if there was a cure for a $100,000 they wouldn’t offer it (insurance might cover it given the alternative). But what if they made it expensive enough for insurance not to pay (thus keeping it from the masses)? Would they?
The good news is that Leo can live a long life with the meds and treatments currently available. The rest of this I find so disheartening. Let’s hope good will conquer greed. Otherwise it’s difficult to fathom that doctors, scientists, researchers and fundraisers might all be in cahoots.
Yes that is the good news. Advances in treatment are fantastic. We also have a relative at age 84 that has lived with diabetes since his twenties. He’s a great rolemodel gives us hope for a long and happy life.
The threat of the worst always stays in the back of our mind (not that far back now). A cure would make life so much better.
Very sobering post, Maarten. Thanks for sharing. I wish I had an answer, but I don’t. Wouldn’t it be great if we had open-source drug companies like we have open-source software companies? I don’t know how an open-source drug company would be funded (curing diabetes is a lot more resource intense than writing an algorithm), but I’m sure plenty of scientists would flock to it. Sigh.
Thank you, sobering indeed. The sad part is that JDRF has poured billions into research and many researchers (not associated with big pharma) do work jointly. Most of these researchers are heavily invested in a cure as they often themselves have t1d or have a loved one afflicted with it.
In this case MIT and its researcher (also funded by JDRF) seemed to be in it for just one thing: maximum financial gain.
I hope truly invested researchers will prevail and when they do can get around the patents owned by others. Even if they do find a cure it will be an uphill battle.
What an important post. I worry that our health care and pharmaceutical system just aren’t well suited to good outcomes. My cousin has Type 1 diabetes and has lived with this his whole life (he’s 50). I remember seeing him inject himself twice a day as a child of 7 or 8. I’m glad things are better, but hope they find a cure and make sure that those who need it get it without breaking the bank.
Thank you Emily, I agree the system is broken and I’m not sure I see a way out. The Epi-pen debacle just showed again how thing are out of control. Same thing is happening with Insulin (http://www.petition2congress.com/21615/reduce-insulin-costs/).
Technology certainly has gotten better but our son still has to inject insulin 4 times a day (at least) and test his glucose 4 times a day (despite the sensor in his back). There is promising talk of islet transplantation (the cells that make insulin) and even an artificial pancreas. Rest assured these will come with a hefty price tag as well.