Monday, February 8, 2016

Things Have To Change: The High Cost Of Insulin & Other Drugs - It's Not Only An Eli Lilly Issue - It's A Pharma Issue.

This post was supposed to go up late last week, but between life and real people  sick hitting hard towards the end of the week, it didn't happen.
 I've thought long and hard the subject matter. Like every person living with diabetes, the cost of diabetes medications and supplies is so very personal to me,  not to mention on a professional level. 
So many emotions and feelings and so much to consider - and if you live with a chronic illness you never stop thinking about the cost of staying alive.
On Saturday I found out that a family friend who didn't have diabetes, owned her home outright and had a good job and health insurance, lost her home because insurance wouldn't cover her anti rejection medications after a transplant (because they were considers experimental and her only choice,) and she was forced to pay cash. 
On Sunday I read a Facebook post showing a friend from high school's pharmacy bill that totaled almost $600 for his monthly medications because of his new plan's extremely high deductible.

I'm not against pharma or profit, but things have to change. 
Like many people, when I first read the article in Marketwatch quoting Lilly CEO John Lechleiter's n the Eli Lilly quarterly phone call, I was mad at John Lechleiter’s responses and reasoning behind the continual price increases.
“Asked on the earnings call about the current debate over drug pricing, John Lechleiter, chief executive officer, said higher prices make sense because it helps the company fund the research needed to find better treatment methods or a cure. 
Yes, they (drugs) can be expensive, but disease is a lot more expensive,” and added, “In 2016, we aim to continue revenue growth, margin expansion and value creation for our shareholders, all while sustaining a flow of innovative medicines from our pipeline to improve people's lives."

FTR: I know that Lilly is a for profit company and I'm not against dividends or profits. 
People are angry and rightly so with the wording and the reasoning, and I know their stock price has taken a hit since the MarketWatch article.

This kind of thinking brakes my heart and infuriates me on so many levels. 
First: his statement made no sense and in my opinion, show a lack of empathy for people living with diabetes. 
Yes, living with diabetes IS incredibly expensive, but continually marking up insulin prices steadily over the years to the point that the cost of for single bottle of Humalog sans insurance is $472 ( and it's been off patent for years,) is a big contributor to the high cost of living with diabetes and nobody can tell me that it isn't. 
FTR: The exorbitant cost of insulin is not only an issue with Lilly because it most certainly is not. This reasoning runs across the board and in tandem with other Pharma companies including Sanofi and Nova Nordisk when it comes to insulin pricing. 
When one company raises the price on a particular drug, in this case insulin, the competition immediately follows suit - matching the increase dollar per dollar and within days.
It's called Shadow Pricing. This article from Bloomberg (and be sure to listen to the audio - VERY important,) explains it drug per drug and dollar per dollar. 

Insurance companies are also to blame for the price increases because they want their cut of the insulin take. 
Many in pharma point to high deductibles adding to the cost and those in the insurance arena say that prices would go down if insulin was available in generic form, adding to the cost of brand insulin with insurance and damn near bankruptcy for those without insurance.

The continual increase in insulin prices have gone for years - well before deductibles went up and well before Obamacare came to be. 

And as far as taking/developing a generic form of insulin, in theory that sounds great. 
But in actually, I don’t want to take a bio similar generic insulin (and if said insulin were actually available,) because I believe that like certain generic time released drugs used to treat depression - bio similar generic insulins won't work as well - because molecularly, they wouldn't be able to work as well.
I think if generic forms of a drug will never be an option because of bio similar specifics,  Congress needs to step up to the plate and pass laws requiring insurance companies to make allowances for bio-similar brands that don’t punish the patient in the form of high cost for needing to take name brand drugs. 

Insulin is not a luxury drug, we take insulin because it keeps us alive as people with t1 - and for many with t2 and LADA - it keeps them healthy. 
Without insulin people with t1 diabetes would be dead.
Dirapram is not a luxury drug either. 
Anti rejection drugs aren't luxury drugs either.
Most drugs that insurance pays for or a portion of, aren't a luxury - they are a necessity in order for the people prescribed them to live.

Insulin has been on the market for over 90+ years and Eli Lilly's was basically given the North American patent rights so insulin could be mass produced and save lives, asap.

On a very personal level, I feel like Lilly has been part of my life forever because it has. Regular and NPH were my first insulins and I’ve been relying on insulin to survive every day for 38.3 years. 
Not only has it been a part of my life, but my two t1 aunts started insulin therapy as children in the late 1930’s and 1940’s. My t1 father began insulin therapy in the early 1950s, and my two oldest t1 sisters started insulin therapy in the 1960s. Eli Lilly kept them alive. Eli Lilly is one my dad was able to live to have six children, instead of dying from diabetes in his early 30's as a young father of two.

I’ve toured Lilly’s facilities, I’ve met the dedicated Lilly scientists who work diligently to make smarter insulins and I know people who work at Lilly and I know Lilly does good things for people with diabetes - and I'm glad and grateful. 

I know how insulin is made and it’s precarious and incredibly precise process - it’s not something that is done in a few minutes or a few days. 
I also know that if there’s one misstep in the insulin making process, be it cellular or in the bottling process - they have to start from scratch - and it’s not cheap. 
I absolutely get that.
But I also know the cost of a bottle of insulin far out ways the cost to produce a bottle of insulin without insurance - and in many cases with, and things have to change. 

I reached out across the internet to one of my contacts at Lilly and let her know that people with diabetes weren’t happy - and we set up a time to chat.
We talked about the frustration of the cost, I mentioned how people with diabetes found no comfort in John’s words or other companies continually increasing the price of  insulins - including insulins that are off patent, like Humalog
There was sympathy on the other end of the line and at one point I was asked what I would do to decrease costs. 
After the obvious - not charging a $472 for an off patent insulin... or an insulin on patent. 
I suggested that pharma needs to step up to the plate and start to police themselves regarding the continual price increases for insulin and other drugs, because soon, (and thanks to Pharma bro and asshat Martin Shkreli for putting the international spotlight on Pharma companies exponentially increasing the price of drugs, both old and new,) the government will do it for them - and they will make up for lost time because that's how elections are won.
 Increasing the price of drugs to the point of where it has people with diabetes and other illnesses choosing between mortgage payments and life saving medications is now a point of politics and is mentioned in speech after speech. 

If pharma doesn’t start policing themselves and act with empathy now, the government will not only do it for them - but in my opinion, will punish the industry for many reasons.
1. Putting the shareholders before the patients
2. making up for lost time
3. Lawmakers and the FDA deflecting the blame from themselves for not setting limits on the price of drugs years ago.

I don’t claim to have all the answers, nor do I wish to demonize pharma companies or the majority of the people who work for them  - sorry, Martin Shkreli is the devil. 

Things MUST change so people living with diabetes and other chronic illnesses can afford the drugs that keep them alive, while shareholders still receive their dividends - there has to be a middle ground where shareholders are happy and patients can afford the drugs that keep them alive - all of our lives and livelihoods depend on it


StephenS said...

Totally agree Kelly... I'm writing a letter to Jan Lundberg, who made a similar comment on the call, and I am cc:'ing my congressman too. Enough is enough.

Unknown said...

It's not always mortgage or meds, sometimes it's homelessness or meds if renting. And worse is literally death or meds when you don't even have the money to buy a new vial of insulin.

Khürt Williams said...

"Putting the shareholders before the patients."

That would open up the company and the CEO to lawsuits. It's the CEO and other executives job responsibility to maximize shareholder value. Any CEO making such a declaration would be replaced by the board.

I think what you are adverting for is stakeholder capitalism—where CEOs feel responsible to all constituencies and not just investors.

k2 said...

You hit the nail on the head, Khurt!

k2 said...

WTG, Stephen!

k2 said...

Agreed! Rent, meds, or being homeless - nobody should ever have to make a choice!

EM's Corner said...

An excellent example of constructive dialog, and some analysis of what's wrong with Big Pharma and out of control market for Type One Diabetics. If this insane trend continues on price increases in life or death disease management -I will not be able to care for myself or my disease. Most of my drugs and durable medical equipment (insulin pump and supplies, continuous glucose monitor and supplies, secondary drugs to make my insulin work better are not covered or are covered at 50%) we have a high deductible.

A 3 month supply of CGM supplies just cost me and my husband $928.00 and my insulin with insurance costs on average $350.00 a month my GLP-1 costs about $375.00 a month and my insulin pump supplies are sickening and outrageous in cost.

Interestingly after some light analysis Medicare doesn't even cover the brands I am using. So really is Medicare for all going to deliver on complex medical conditions?

Compromise in there somewhere sure, but I don't need to be told preferred drugs save you money if they just don't deliver results. How will GOP or DEMs address the insanity appropriately?

I think the subtle message frankly has been from both parties, "go off yourself" ...

Anonymous said...

When the cost of insulin means people have to do without it, it means people die. When the cost of it limits someone to one vial per month when they really need 3, it means they're getting all the other complications that some with diabetes and it compounds. Heart disease, neuropathy, retinopathy, etc are all possible results of uncontrolled type 1 diabetes, and they cost not only the person, but also the insurance companies so much more than most realize.

Scott S said...

I concur, but I think a really important element is missing from the dialogue, namely that our Government has been very complicit in allowing these price increases to occur unchecked to decades. Not only has pharma lost sight of its role (they now see themselves mainly being accountable only to shareholders, rather than medicine in general). The NYT author notes "Over the past 10 years, the Federal Trade Commission has brought only a single enforcement action against benefit managers, over an issue of patient privacy violations." Our antitrust regulators have allowed pharma mergers to go unchecked, allowing them to get bigger and bigger and not forcing divestiture of certain businesses in the process. And, of course, thanks to pharma lobbyists, the Federal government through CMS (Center for Medicaid Services) is not permitted to even negotiate prices with big pharma companies like Express Scripts and CVS Caremark or big insurers like United Healthcare and Aetna are allowed to. What @$$#@t dreamed that provision up? You can bet he/she got a big donation from pharma during their last election.

LivingVertical said...

Where do JDRF and ADA fit into this equation? They straddle a unique position between the community and the industry. Surprisingly, they have been silent on this issue which affects literally all of us and involves medication that we have. Right now. How is it ok for them to just hop into bed with the industry and leave the community high and dry. High, without insulin, get it?