Friday, September 25, 2015

The Daraprim Effect

I write about living with diabetes, I Advocate for people living with diabetes, and it's incredibly important to me that patients not only have Advocates, but that people advocate for themselves and others. I wrote this post because of my outrage and my fears regarding prescription drugs that save lives, but whose prices continue to skyrocket. Simply put, I'm afraid that The Daraprim Effect, which has been happening long before Shkreli came into the picture, will continue to spiral out of control ~
 Yesterday, it was announced that Turing Pharmaceuticals would lower the price of Dararprim from it's overnight price hike of 5400%, after a public backlash of global proportions. 
When I first heard about the unethical,and yes I'll call it as I see it - dick move by Turing Pharmaceuticals CEO, Martin Shkreli, the man who decided to increase the price of the drug from $18 dollars a bottle to $750 dollars because he wanted to make more money from an older drug.  
The hedge-funder turned Pharma owner felt that the 62 year old drug was undervalued -and stated he still felt that daraprim was undervalued after the price increase. 
Watch his interview on Bloomberg TV interview and prepare to be disgusted. 
Shkreli also used the skewed reasoning that the 5400% price increase would help generate funds for new cancer drugs that Turing Pharma hope to create and sell in the future. 

Martin Shkreli has a history of Pharma greed and is current being sued by Rerophin, a Pharma company he founded and was eventually ousted from, because of allegations regarding misconduct, etc.
 Like many, I was disgusted and angry when I heard about Daraprim - and as a person who relies on a a prescription drug in order to lived, I was scared. 
In my mind I kept thinking: What if what was happening to Daraprim was happening to insulin?  Like millions, I need insulin to live - and even with insurance - the cost of my monthly insulin is over almost four hundred dollars - and that price continues to go up.
If it wasn't for my Endo giving me generous amounts of insulin samples - I'd be royally screwed.  

My fears don't seem so far fetched when you consider Shkreli's history of short selling  Afrezza stock. 

Eventually, I facebooked and tweeted what was on my mind. 

And of course I wasn’t the only one feeling that way, aI received tweets and Facebook messages of support. And 1 tweet from a person who told me that applying economic theory to something so personal was like a Doctor treating their spouse. 
But it is personal got me. VERY PERSONAL. And I think it's personal to every single person who has dealt with a chronic illness or a deadly disease. 
But we don’t have to agree on everything -as long as we agree that that crazy Daraprim price hike was wrong.  

Daraprim is an old drug with multiple uses that help many. A drug created 62 years ago to combat malaria and now primarily used to treat toxoplasmosis, a parasitic infection that can cause life threatening problems for babies whose mothers become infected while pregnant - and people with compromised immune systems including AIDS and certain types of cancer. 

"An old drug with multiple uses that help many," also reminded me of two other drugs used in the diabetes arena, Metformin and Ramipril. 
Metformin, a generic diabetes medication (brand name, Glucophauge,) that was originally marketed to people with type 2 diabetes, but has since been used along with insulin to help prevent spikes and combat insulin resistance in people with type 1 diabetes. 
Another magic power of Metformin is the protective effects it has on the vascular system - something that people with and without diabetes and regardless of the type, benefit from. 
Ramipril, while not created as diabetes drug, is a generic ace-inhibitor (blood pressure medication,) that not only battles high blood pressure issues, (something people with diabetes are prone to,) but is also incredibly beneficial in protecting the kidneys of people with diabetes. Endo's prescribe ace inhibitors to many with diabetes and normal and high blood pressure in the hopes of preserving and protecting kidney function.
Both drugs have been on the market for years, both drugs are reasonably priced, and both drugs have multiple uses. 
So yep, such an outrageous price increase could absolutely happen to drugs that people in the DOC and beyond use daily. 
Then I thought of my diabetes heroes and saviors, Dr. Banting, Best and McCloud. 
What would those men think of Shkeri's plan? Those men that all of us living with T1 diabetes owe our lives to. 
Amazing men who not only discovered and patented their extract of insulin and won the Nobel Prize in the process, but decided to give that patent to the University of Toronto, who used the income generated from said patent to generate funding for diabetes research. 

I had a feeling that those men were rolling over in their graves.

Then I saw the following tweet and became inspired and angry all over again. 
Yesterday I saw this Meme at and originally attributed to , comparing Shkeri to Jonas Salk, the Virologist/Redical Researcher extraordinaire who spent 7 years developing the polio vaccine. A man who felt that it was his moral duty to vaccinate the globe against polio - and who said that putting a patent on the vaccine would be like putting a patent on the sun.  

Look, I know drug companies are for profit businesses, I understand and accept that.  
And I'm the first one to say that I've benefited and that I'm alive because of pharmaceutical drugs and diabetes technology. 
But like many Americans, the cost of living with a chronic disease keeps me up at night. 
I worry about my financial future - I don't want pharma to be run by Shkreli's of the world 

Except what Martin Shkreli attempted to do isn't new - It’s been happening with drugs for years, and the FDA needs to set up boundaries because if they don't, such hikes will continue. because people like Shekiri will buy the rights to old drugs and charge an astronomical price for them, all in the name of making a buck. 
60 minutes did a story on the high cost of cancer drugs in October:
And the price of generic drugs are skyrocketing so much, the feds are looking into it. 
The Atlantic's Julie Beck wrote a disturbing and excellent piece on the Deraprim's exorbitant price hike being part of disturbing trend. CLICK HERE, and read it!
Beck's article quotes and links to a study that was recently published in  Neurology.Org. The study states that first generation MS drugs, which originally cost between $8,000 and $11,00 dollars, now cost upwards of $60,000 a year for those who need them.
Click on the following to get a breakdown of the study - It's a must read that paints a very real and disturbing picture of drug pricing:

Carolyn Johnson of the Washington Post said it best when she wrote: "Shkreli's actions were shocking for a simple reason: It was an unusual moment of complete transparancy in health care, where motive's prices, and how the system works are rarely ever talked about so nakedly." 

Because of Shkreli's "nakedness" and his blatant greed, he allowed the public a peek into a very opaque system regarding drug pricing in the U.S., confirming our thoughts and fears in the process - And I thank him for that. 
Now that our fears are confirmed - we must stop the epidemic of The Daraprim Effect from become a plague  - because our health and our financial futures depend on it.    


Susan said...

Well put my dear. No over-reaction - I was similarly disgusted - even the thought of this should get everybody's Grrr into gear. Anyone who knows ANYONE on a lifetime/lifeline or life-saving medicine shook in horror at reading that article. It cannot be allowed.

On another note - I miss you tons and cannot wait until March!!!

Richard's Rambling Review said...

Kelly, this is a wonderful blog. Thanks for presenting it. I wish that the people involved with overpricing important lifesaving drugs would read this blog. Would it make a difference? No, I think not. I suppose it helps us release our own frustrations, and that is a good thing.

There is a bill submitted to Congress that would have Medicare cover CGM's. Is it possible to create a bill that would put a cap on the percentage increase that would be allowed on drugs? I wonder. I have an overactive imagination at times.

Mitch said...

I fully agree, but I do want to bring a small bit of perspective to this issue.

Truth be told, the drug was drastically undervalued... at least in today's world. When it came out it was considered a high priced pharmaceutical, but that was to be expected. The truth is there are lots of pharmaceuticals that are created every year that are buried because the companies know that they'd have to charge a lot of money for them because the market for them is small. That sets up a love/hate relationship with everyone so instead they don't even put it out. That's not a hidden fact by the way. I see the business point of view; if it costs more to create than to sell, who would really do it, even if we'd hope to expect a bit of altruism from these large labs?

However... after this long a period, jacking the price up like that was ridiculous. This guy is a worm, and he proved to be moreso by fighting with people on Twitter about the price increase for 3 days before realizing the mistake. However, it was the falling stock prices that made him change, not the debate; when all is said and done, it all comes down to money.

Janis Nussbaum Senungetuk said...

Excellent post. Thank you for doing through research to support your views. As someone who is totally dependent on the lifeline provided by insulin I'm terrified by the for profit actions of the pharma industry that do not get noticed by the national media. Hopefully, the actions of this greedy jerk will bring much needed attention to the dire need for true universal healthcare in the United States. Why are all of the wonderful advances in disease management only available to those who can afford them? That's very wrong and demands change.