Coaching in Type 1 Diabetes: A Patient's Perspective

One of my "Twitter Buddies" is a Certified Diabetes Educator who is working on an advanced degree. On Twitter she asked the question, "Okay, working on a school discussion. No better people to ask them those with DM themselves: What's your favorite coaching strategy from your HCP to help you prevent complications? #DSMA" Since my answer would run longer than 280 characters, here goes.

I essentially have two distinct health care teams. My primary care provider is a GP who treats veterans in the Veterans Affairs healthcare system. That patient population likely has fewer people with Type 1 Diabetes than a more diverse population than those seen by a GP in private practice. He generally helps me with regular health concerns. When it comes to Diabetes, he generally defers to my Endocrinologist while at the same time helping me get care for some of the Diabetes-related issues.

The other part of my team is led by my Endocrinologist who divides her time between the VA and work in a teaching hospital. This gives her intimate familiarity and experience at helping me manage the nuances of Type 1 Diabetes.

When I first met my PCP several years ago, he reviewed my electronic health record and said, "You need to get your A1C down." This is something I already knew going back to 1994 when I was diagnosed and shortly after the Diabetes Control and Complications Trial was published. That trial basically said there is a definitive scientific basis for the notion than lower blood glucose levels result in a lower incidence of common complications arising from Diabetes. What my PCP was saying was something I already knew, was something I was working hard to accomplish on a daily basis, but because of challenges from other complication it was something I was unable to do.

I told him something along the lines of "I've read the DCCT, I know what it says, and my Endocrinologist and I are working real hard at optimizing my A1C. However, between gastroparesis, hypoglycemia unawareness, impaired kidney function impacts on insulin efficacy and despite frequent blood glucose monitoring, use of a Continuous Glucose Monitor and the most advanced insulin pump available to me, this is (for now) as good as it gets." What I was communicating was that I am aware of the importance of lowering my A1C, but am also knowledgeable about my illness and the various factors in my particular situation that make this goal challenging. I also said, "What I need help with from you is in managing these variables." I was asking for his expertise and experience and showing him that I was going to be cooperative and willing to do my part with helpful guidance from him. Just saying "You need to lower your A1C" was simple but not helpful - what I was looking for was concrete, actionable and realistic tools and tips to meet that objective. So far, with that common outlook in place, this relationship has worked out pretty well.

With my Endocrinologist, the coaching relationship is a bit different. I am fortunate that our relationship is (as I see it) a fully collaborative partnership. As we discuss my case, we take into account clinical best practices and work them into realistic lifestyle choices that will most safely lead to optimal glycemic control. She is in close contact with my gastroenterologist, nephrologist and cardiologist as well as my PCP - the idea being that she stays informed about the other issues having a bearing on my Diabetes management.

While my healthcare team helps "Coach" me to be as healthy and happy as I can be with all of these challenging conditions, I believe that just like an athlete, coaching can only do so much - the actual performance is up to me.

Advocating for Affordable Insulin: Thinking Outside The Box

 

There is no issue of greater concern for people with Type 1 Diabetes than the rising cost of insulin. From Washington to your local pharmacy, people are furious, frustrated and scared. While some turn to social media to vent their anger and advocate for change, others look to Congress for a solution. The former might make folks feel like they are doing something (and feel better in the process). Traditional media (newspapers and TV news) have also covered the issue of the exorbitant cost of insulin. In addition, the President and some in Congress have said that out of control drug pricing is a problem that needs to be solved, but beside posturing, there has not been any substantive legislation introduced that could realistically be enacted.

 

In other words, there is a lot of 'buzz' about the issue. Other than a lawsuit alleging price fixing and collusion between the three major insulin manufacturers, there aren't any prospects of a solution anywhere on the horizon.

 

So what is the solution?

 

Each of the three major insulin manufacturers (Eli Lilly, Sanofi and Novo Nordisk) are publicly traded corporations. They view their primary obligation to provide value to their shareholders. Love it or hate it, that is why they exist.

 

Since they are focused on pleasing their shareholders, we could look at reaching equity owners as to get these corporations to manage insulin pricing differently. Sanofi currently has 2.584 billion shares trading at $49.21 each. Novo has 1.96 billion shares trading at $40.60 each. Lilly is priced at $80.19 per share, and with 1.103 billion shares outstanding has the lowest market cap of the three at $88,500,000,000. Unless you are Warren Buffet or Bill Gates and you put all your money into just one of these, you don't have the financial horsepower to bend them to your will. Scratch that idea.

 

Who sets insulin prices in the first place? Most likely it is a team of financial and managerial accountants who consider cost data, sales forecasts and guidance from senior management among other considerations. After crunching the numbers they arrive at a figure, it is approved by the executive(s) empowered with that authority, and then put into place. As conditions change, that price will be evaluated and the process repeats. But if they arbitrarily drop the price, revenue will fall and the bean counters will have to make it up somewhere else in order to (as always) keep investors satisfied.

 

Maybe appealing to the Chairman or CEO would work, right? If we leaned on him hard enough, couldn’t he just say 'the hell with it - we need to make insulin more affordable, so we are dropping the price to $X.XX per vial.' Well, no - for a couple of reasons. Like the bean counters, they are responsible for keeping the shareholders happy by maintaining optimal profitability. Secondly, making one group of customers happy would probably infuriate other customers. Dropping the cost for patients with diabetes would mean raising prices on products used by other patients. Placate the second group and the process is repeated ad nauseum. One thing Chairmen/CEOs avoid like the plague is unnecessary turmoil. Annoying customers and investors isn’t part of their job description. Which of us goes out of our way to jeopardize our livelihood - especially for a constituency that will likely be unsatisfied and won't do anything for us? Finally, they get paid to take heat when it comes, and part of that is weathering a storm – like insulin prices.

 

So who can get things done? The Board of Directors. They set the strategic direction of the corporation. As long as shareholders are generally happy, directors are empowered to do almost anything they want. By and large they have pretty wide latitude. Normally a Board wouldn't get so far into the weeds as setting prices for a product, but if there is enough pressure on them to get involved, they just might. Also, they aren’t the public face of the corporation. Nobody raises hell with them, so what a Chairman/CEO might brush off as part of their job might be enough to get a Director to ask hard questions. The kind of questions that a Chairman/CEO and his subordinates would have to answer.

 

Here would be my plan of attack:

 

I’d go after the Directors of Lilly. Sanofi and Novo Nordisk are multinational corporations that are headquartered overseas. They’d be less vulnerable to public heat in America than Lilly would be.

 

I’d look at their Board of Directors and their biographies. Which would be most likely influenced by the stories of patients who could not afford insulin? Maybe those with a healthcare background – particularly in patient care?

 

I’d look at the members of the Public Policy and Compliance Committee. Part of their charter is to “…review, identify and when appropriate bring to the attention of the board political, social and legal trends and issues, and compliance and quality matters that may have an impact on the business operations, financial performance or public image of the company.”

 

I’d get the contact information for each of the directors I was going to contact. Google is your friend.

 

I’d send each of them a one page letter. They are more personal. They are not as easily dismissed as an email. They are not missed like a tweet (assuming some of them are on Twitter).

 

Here is what I would say:

• I’d tell my story.
• I’d identify myself as a customer.
• I’d tell them my very life depends on their product.
• I’d tell them how much I pay for their product, on top of my insurance premiums and co-pay.
• I’d tell them what I cannot do for my family or myself because of how expensive their medicine is. I’d ask them how they would deal with these challenges if they were in my shoes.
• I’d tell them what I think is a reasonable profit for insulin.
• I’d ask them to contact me and tell me how they will make insulin affordable, when they will do it, and what they’ll do to keep it that way.

 

Most of all, I’d share that with other people with diabetes. I’d tell them what I did, who I contacted, what I said and I’d encourage them to do the same.