It's Complicated: Eating with Diabetes--When Your Stomach is Broken

 Last night I came across a Tweet from Ginger Vierira (@GingerVieira) that caught my eye. I thought about it for a few minutes before responding (always a smart thing on Twitter). 

How has type 1 diabetes affected your relationship with food? I'd like to included your answers in an article I'm working on! Feel free to reply to this tweet or send me a DM if you'd like to contribute. <3 Thank you! #t1d #type1diabetes

It's a complicated issue. In a nutshell, with Type 1 Diabetes (T1D) we have to calculate how many carbohydrates we eat and administer an appropriate dose of insulin. Okay, it's a lot more complex--meauring blood glucose (BG), adjusting the insulin dose to get to a target, etc. If you've done it, you know.

But her question is complex, too. Insulin is expensive as hell and more than a few people follow a diet low in carbohydrates that requires a lower dose of insulin. If you can't afford it, the obvious solution is to use as little as possible. Tragically, so-called "insulin rationing" can be deadly. Too many people are forced to do that and it'll definitely affect your relationship with food.

It's long been proven that keeping blood glucose as close to normal as possible leads to fewer diabetes complications. The Diabetes Control and Complications Trial, or DCCT, was so conclusive that it was ended early so that the information could be shared promptly. Consequently there is a school of thought that the healthiest strategy is to best manage T1D a "low carbohydrate" diet is the way to go. Dr. Richard K. Bernstein is the acknowledged pioneer if this approach and it's most vocal advocate. Details, pros and cons can be found here. Again, like insulin rationing, if you want (or feel the need) to follow this approach, it'll also inform your relationship to food.

There is another way of thinking about carbs and diabetes: if you know how many carbs are in a meal, and how your body utilizes insulin, then you can eat like a person without diabetes--within reason. I'll put an emphasis on "WITHIN REASON." A Big Mac, large fries, large strawberry shake and an apple pie has 283 grams of carbohydrate--103% of the recommended daily allowance (their number, not mine). Whether you have T1D or not, that'll give your pancreas some serious pain.

But what if your stomach doesn't work right? To review 8th grade anatomy, after you swallow food it enters the stomach. Acidic digestive juices are secreted and along with the stomach contracting to mix it up, after a while it empties from the stomach and enters the small intestine. If there is a problem with how the stomach contracts, or passes it to the small intestine, you might have gastroparesis. "Paralyzed stomach" is a loose translation, and this complication affects 1 in 3 people with T1D. I've been wrestling with it for over a decade and I can tell you it makes living with T1D a monumental challenge. Here's why:

When we inject (or pump) insulin at mealtime, we are counting on the predictable rate of action of insulin. We are also counting on the speed that the carbohydrates start getting converted to glucose. Done right, blood glucose will rise (it does that in people without T1D) but not too much. But with gastroparesis, the food is held in the stomach for too long, or it empties too slowly. Consequently the insulin starts working but if there isn't any of that food to work on your BG will dive. That's bad and can result in hypoglycemia, or low BG. Normally you treat the low BG with carbs, but now you have just added more carbs on top of the carbs from the meal. Guess what: your BG is going to spike, likely resulting in hyperglycemia. The solution to that is more insulin. Welcome to the Gastroparessis Hamster Wheel.

There are dietary recommendations on how to eat with gastroparesis. The University of Virginia's guide is well respected, as are tips from the International Federation For Functional Gastrointestinal Disorders or IFFGD. Both are useful and naturally before starting this, or any diet or treatment for T1D always talk to your doctor or a Diabetes Care and Education Specialist.

So how do you manage T1D with gastroparesis, and how does that inform our relationship with food? I'll describe my experiences in future posts. In the meantime, be well and stay safe!

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.