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.

 

Why Insulin Pumps Work Well With Gastroparesis

In a Facebook group for people with gastroparesis, a member with that and Type 1 Diabetes said that he'd been hospitalized a couple of times and that his doctor recommended that he should start using an insulin pump.

Gastroparesis is a complication of Diabetes where the stomach does not digest food properly. Most usually it means that the stomach does not move food along the digestive system as rapidly as a healthy stomach. Rather, for unknown reasons the food often just "sits there." One of the symptoms is excessive fullness (picture Thanksgiving afternoon but you only had a cup of yogurt). Others include pain, cramping, nausea and vomiting. The culprit is believed to be having had high blood glucose levels for an extended period of time, though other causes are being investigated.

On top of the nasty symptoms, gastroparesis makes controlling Diabetes challenging, if not impossible. I pointedly asked my Gastroenterologist what I needed to do to minimize the symptoms of gastroparesis. She said, "Get your A1C down and it will get better and possibly become unnoticeable." I passed that along to my Endocrinologist to get her advice on how to do that. She said that gastroparesis made it difficult, if not even dangerous to try and lower my A1C. Lovely.

For the uninitiated, here is how a person with diabetes normally uses insulin to control blood glucose. Before they consume a meal, they will measure their blood glucose. If it is above their target, they have to figure out how much insulin to inject to get it back to the desire range. Then, they count how many grams of carbohydrates are in the meal. Once it is eaten, those carbs convert to glucose and enter the bloodstream. To counteract that rise in glucose, an individualized formula is used to determine how much insulin will be necessary. They will add those two doses and inject the insulin about the time the meal is served.  Once injected, the insulin "peaks" at around one hour, then the amount in the person's system falls off gradually, disappearing completely after a few hours. This "rate of action" is designed to mimic how a person's blood glucose will rise shortly after a meal and then tail off. If the stomach is functioning properly and the person gets the calculations right, things often work out nicely.

Not so with Gastroparesis. Delayed or impaired stomach emptying screws up this delicate balancing act. Say a person is about to have a meal. They measure their BG, calculate the insulin correction. They count the carbohydrates in their meal, determine how much insulin to take for the meal, then add the two doses. They do the injection and have their meal. But since the food could sit for hours in their stomach, the insulin will take effect when their isn't an increase in the BG. As a result, their BG could drop to dangerously low levels. The person then would have to take some glucose to get it back to a safe level. But after wrestling with that, the food finally starts to digest and the carbs in the meal are converted to glucose and enter the bloodstream. Now the BG rises (in my case as many as 5 or 6 hours after a meal) but there isn't any of the insulin that was injected before the meal left to push the BG back down. Now the BG is too high, and the patient has to decide whether to ride it out or to inject some extra insulin to get the BG to where it ought to be.

That is how it works when using traditional shots. You could divide up the meal bolus and give yourself a couple of small shots over time, but that is unwieldy, somewhat complicated and impractical.

I use a Medtronic 530g Insulin Pump. It has  there are several features that allow me to tailor how much insulin is delivered and when. One option is to use a "square wave bolus." This delivers the insulin at a constant rate over a user selected time period. If I was eating a meal over a long duration (say a working dinner in a restaurant) and didn't need a correction, I'd use this. If a correction was needed, I would use a "dual wave bolus." With this, you get a user selected amount of insulin immediately and the remainder is delivered over time just like the "square wave bolus." You can also add some insulin to come on the front end on top of the correction bolus and the remainder later. After much trial and error, this is what I do. Most of the time it works fairly well, but not always. If a meal is particularly heavy, I might stretch out the length of the bolus from my typical one hour to an hour and a half or even two hours. If it is light and easily digested (like a can of Ensure) then I might decrease the time period, or shift more of the insulin to the beginning of the bolus.

To answer the gentleman's question of whether an insulin pump is the way to go for managing Type 1 Diabetes with gastroparesis, I'd unhesitatingly say that for many people it is. While more costly than shots, and somewhat more complicated, those drawbacks are more than offset by the flexibility it offers in dealing with a challenging and complex set of circumstances. If available to him, I'd enthusiastically encourage him to give it a try. It has made a real difference for me and given the current state of technology in diabetes management, this is the only way to go.

New NC Bill Could Get People With Diabetes Off The Road

If you have diabetes and have an accident, you could lose your drivers license if a bill being introduced in North Carolina becomes law. House Bill 653 would require reporting if a driver with diabetes had a 'diabetic coma' and was involved in an auto accident. It would mandate a temporary, and potentially permanent loss of a drivers license. It does not include similar consequences for other drivers with recognized medical conditions that could hamper safe driving.

For people with diabetes in North Carolina, getting a drivers license is no easy feat.  According to the NC DMV website, "If you suffer from a mental or physical disability that might affect driving safety, a license may not be issued. A disabled person may be issued a restricted license provided the disability does not keep him/her from driving safely" The process for getting a license requires when an applicant has a medical condition that might impact safe operation of a motor vehicle is spelled out in the DMV's "Medical Evalution Brochure." In addition to diabetes, it lists 11 other general and specific conditions that the DMV wants to know about.

If one of those conditions is reported to DMV by a physician, family member, or law enforcement official, the driver can be required to fill out a "Medical Report Form" and have their physician provide their observations. There is then a hearing to decide whether or not that person will be allowed to drive. If they don't like the answer, they can appeal. They can also put in a request to be removed from the program. Like most things DMV, it is amorphous, tedious and annoying.

But the new legislation being introduced makes keeping a license harder, is discriminatory and fatally flawed it its underlying premise. If you have a wreck and somebody figures out you have diabetes, you could be put into that program. While that process is going on (for weeks or months) you cannot drive. The proposed law is also discriminatory since it only applies to people with diabetes and epilepsy - leaving out many other conditions that could make a driver potentially unsafe. Finally, where it pertains to diabetes, it singles out drivers suspected of having an accident caused by "diabetic coma" - an inexact phrase generally referring to extremely high or low blood glucose. In most respects, many symptoms occur long before coma is experienced - most of which would make driving impossible long before an accident could happen.

To fix this bill, several possible things should happen.

• It should be killed in committee. 
• All of the other conditions that are addressed in the North Carolina Drivers Medical Evaluation Program should be included in the interest of fairness, efficacy to the intent of the bill, and to ensure consistency throughout the program. 
• Table the bill and instead create a Legislative Study Commission to ensure that the intended result is achievable, done equitably and protects both individuals with disabilities and the general public. 
• Delete the term 'diabetic coma' and instead place language that is medically justifiable, objectively determined and supports the reality that diabetes effects different people in different way.
• Delete language that arbitrarily suspends driving privileges prior to the completion of the administrative process. Such a suspension should only be allowable if there is clear and convincing evidence provided by a licensed physician that clearly states a driver cannot at any time safely operate a motor vehicle. 
• Allowance should be made for the fact that blood glucose levels may make driving unsafe at one moment and as safe as any other driver in a matter of minutes.
• Require that evaluations for driver fitness be covered by Medicaid.

On a poersonal note: I can assure you from personal experienced that having an automobile accident while in a 'diabetic coma' is next to impossible. I've been in three 'diabetic comas' and it is hard to drive a car when you are unconscious in an Intensive Care Unit.

 

CALL TO ACTION

1. Find your legislator and encourage them to NOT sign on as a co-sponsor of this bill. Doing so would indicate support of legislation that further marginalizes people with diabetes and in a way that will not accomplish the goal of safer roadways that this legislation intends.

2. Reach out to other people with diabetes in NC. Make them aware of this legislation, how it could affect them and encourage them to reach out to their legislator.

3.  Periodically check the bill status. When it is scheduled to come up before a committee, consider going to that meeting to personally express your opposition. That carries a lot of weigh with legislators, and is the easiest way to get a bill either changed or killed outright.

 LEGISLATION DETAILS

Entitled "Report/Car Accident Caused by Seizure or Coma," HB 653 would require that any automobile accident that was caused as the result of a driver suffering from a 'diabetic coma' must be reported. It further requires that the DMV "shall evaluate whether the medical condition affects the driver's ability to safely operate a motor vehicle and SUSPEND THE DRIVERS LICENSE OF THE DRIVER PENDING COMPLETION OF THE EVALUATION." (emphasis added). The proposed legislation goes of to state that, "If the Division determines that the medial condition does not affect the driver's ability to safely operate a motor vehicle, the Division shall restore the drivers license of the driver at no cost to the driver. If the Division determines that the medical condition does affect the driver's ability to safely operate a motor vehicle, the Division shall cancel the drivers license of the driver in accordance with G.S. 20-15(a)(4). Upon cancellation, the driver may appeal the decision of the Division  or seek issuance of a new restricted or unrestricted driver's license, in accordance with the process set forth in G.S. 20-9(g)." Finally, "reports under this section made by law enforcement officers and medical examiners are public records and are open to inspection by the general public at all reasonable times."

Simple Tips for Coping With Diabetes

"How do you eat a whale? One bite at a time."

That is what a wise old Army First Sergeant told me once when we were getting hit with a hundred tasks at once, each more important than the last. In the 12,186,720 minutes that I've had Type 1 Diabetes, that advice has come to mind more than once.

We know that dealing with this is a 24/7/365 proposition. Even when we are asleep, it can still wake us up and demand our attention. Most of the time, we are on our own. If we get an hour to talk diabetes with a doctor every 3 months, that amounts to 0.046% of each year. If we are lucky, we get as much training in managing diabetes as we would if we took a CPR class. In other words, we get to mange and be held accountable (by doctors, family and friends) for mechanically managing a complex biochemical process with potentially deadly drugs using inexact tools and relying on minimal training. Oh yeah - there is no end in sight, and no reward for winning.

It's no wonder that this gets us stressed out and overwhelmed from time to time. We all have days where everything works perfectly. More likely that insulin bolus is as effective as a shot of water, the carb data we use came from a practical joker, or our blood glucose meter spits out numbers that came from a lottery number generator. In other words, we do our part right but it doesn't work. All of those failures - one after the other - can destroy our confidence (a critical thing we need when trying to stay on top of a potentially deadly disease).

I've been playing the D game for 23 years. I've had ups and downs, and more than once I've wanted to throw in the towel. But we don't have that luxury. Like another friend said, "you don't have to like it, you just have to deal with it." Here's how I try to keep things on an even keel and to keep a sense of calm in the process.

• Don't beat yourself up over the past. Learn from it if you can, but if your carb count was off, your bolus didn't work or that correction didn't budge your BG one iota - forget it. You can't change it - it's over. If you had a 12 hour run between 110 and 115, celebrate. Use that to leverage your confidence. Learn from the bad, celebrate the good and move on.

• Focus on today. You know what you need to do: do it right. Test before and after meals, before driving and when you feel off. Use the best available data for carb counts. Get the insulin going in a good location and on time. Every time you do something D related, do the best you can with the use of all the experience and judgement that you've accumulated in your D journey. I talk to myself silently as if I were explaining what I was doing and why to my endocrinologist or to somebody I was trying to teach. Today is the focus. If I give it my best effort, that is the best I can do. When my A1C results come back, I'll know that every day I gave it 100% and I'll be pleased with that, regardless of the number.

• Don't sweat tomorrow. If you think about how many carb counts, finger sticks, boluses and corrections that you will have to do in the next 5, 10 or 20 years (or until there is a cure) it will overwhelm you. When I was a little kid, I watched my mom take a thyroid pill. I asked her how long she would have to do that and when she said "for the rest of my life" I was freaked out. I couldn't imagine that. The same goes with my own diabetes. One time I counted all the shots, fingersticks, etc. that I'd done. While the numbers were impressive and I thought I was one hell of a guy for having done all of that, it also made me think of what they might be a few years from now. Not good. Instead of worrying about that, I figure if I work hard today, tomorrow will take care of itself. 

• Help each other. Somewhere, somebody is out there who has been where you are now. Reach out - you'll be surprised how many people like you are willing to help. Likewise, you have wisdom that might help others. (That is why I write some of these things.) Twitter, Facebook and some online communities are great places to find those folks. There may be groups in your community as well. Keep your eyes and ears open - help and support might be just around the corner.

In a nutshell, diabetes can play hell with you psychologically, but it doesn't have to be that way. Do your best now and don't think about yesterday or tomorrow. Easy to say, but hard to do. But just like trying your best today with managing your diabetes, handling the mental part works the same way. Do your best, forgive yourself when needed and keep working at it.

You can do this!

What's Worse Than A Low? A Heart Attack. Here's What Mine Was Like.

When I was first told about the complications that often come with Type 1 Diabetes, blindness, amputation and dialysis (what my doctor called "The BAD Ones) were those I feared most. They also said something about cardiovascular ones like heart attack and stroke, but since those happen to millions of people, I didn't worry about them much. I should have.

Stone cold fact: 3 out of 4 people with diabetes will die of a heart attack. Two weeks ago, I almost did.

Warning Signs I Ignored

On a Tuesday, I started to notice some pressure in my chest. No big deal - I've had it before, and my cardiologist told me not to worry about it unless I had other symptoms of a heart attack. Some of those either mimic Type 1 complications (sweating-hypoglycemia; indigestion or nausea-gastroparesis) or are hidden by another complication I have: autonomic neuropathy). But when shortness of breath and pain between my shoulder blades and in the left arm started, I began thinking something was going on. Or not.

Why not? Well, at most the symptoms were subtle - what I thought of as niggling. But they were persistent. After a lot of internal debate, on Thursday I decided to make the trip to the Durham Veterans Affairs Medical Center.

At the time, their ER was the subject of some negative press and intense scrutiny over alleged mistreatment. My experiences there (more than I can count) had been the opposite. Like any ER, if you aren't in extremis, you are going to wait. They'll get to you, but be prepared to be patient. This time, that wasn't necessary.

During My Heart Attack

I walked in at 3:50. I checked in and said I was having chest pain. A triage nurse heard my symptoms, took my vitals and gave me a baby aspirin. He hooked me up to an EKG, printed it out and disappeared. Within a minute they took me to a treatment room and drew some blood. In just a couple of minutes, the blood test result was back: my Troponin was at 6.56 (normal range is 0.0-0.49). One doctor explained it this way: Troponin is a heart enzyme test that shows if you are having a heart attack - it is the heart's way of say it is pissed off. Mine was.

By a quarter after four, doctors and nurses came out of the woodwork. Between the EKG and the Troponin I was clearly in the middle of a heart attack. One doctor said that they were going to do a cardiac catheterization on me - the only issue was whether it would be upstairs in the Durham VAMC or across the street at Duke Hospital. In as long as it takes to make a phone call, they took me upstairs. Happily, the cardiologist doing the procedure admitted that he liked the VAMC setup better - it was newer and better equipped.

They rolled my bed to the elevator and up we went. When we were in the hallway, I learned that the bed was motorized - suddenly we were flying down the halls. Once again, I was not disappointed.

The procedure was no big deal from my perspective. The only moment of worry was as the medical team was going down their checklist, one of the nurses asked me if I was an organ donor and if I had an advance directive on file. I told her yes to both, but chided her in a good natured way that those questions were not the best for inspiring confidence. We all had a good laugh over that.

First, my wrist was injected with a medication to make it numb. A catheter was placed in a vein in my wrist and snaked up to my heart. A dye was injected and filled the arteries of my heart. The doctor could see it on an x-ray screen. (The last time I had a 'cath' I was able to watch, but this time some of the equipment blocked my view.) I heard him describe the percentage and length of the blockages he found on my right coronary artery. Both were 99% blocked, one section was 23mm long, the other just 12. A balloon was used to clear both of them and a wire mesh called a stent was used to prop both of them open. Operation over.

From start to finish, the procedure took maybe 30 minutes, and it was barely an hour after I'd walked in the ER. Next stop: the Cardiac Intensive Care Unit. After the usual questions (how to you feel, are you in any pain, etc.) the next item on the agenda: dinner.

What I Learned

Part of my heart died. Starved of blood, a portion of the heart muscle died - getting stiff like a leftover hunk of porterhouse in the fridge and not nice and supple as it was before. In future tests, my cardiologist will look at this closer and will see what we will need to do to compensate for that.

Like other people with diabetes, I have long feared episodes of hypoglycemia - 'going low.' It is distressing, often painful and the hallmarks are discomfort, sweating, panic and helplessness. We often hear of people going so low that they die, and that tends to scare many of us to death. In my mind, that is the worst part of diabetes. As I found out, there are worse things, much worse.

Closer to home, about 18 years ago my mom had a massive heart attack and died. Her symptoms were almost identical to mine. Also like me, she didn't seem to think they were a big deal. One critical difference was that she was on a car trip in the middle of rural Illinois. In my case, I was an hour or two ahead of her when I walked into the ER. Had I not, according to the doctors I spoke with, I'd have had the same fate.

What continues to trouble me is that my symptoms were minor - barely niggling. On a scale of ten, my pain barely made it to a 4 at the most. Usually it was in the 1 to 2 range. My endocrinologist opined that with years of autonomic neuropathy, those signals weren't working right and that I'd have to use my brain to compensate for what my body wasn't telling me.

Another oddity is that I'd had a cath done 11 years ago. No stents, and at worst my left coronary artery was 50% blocked. Nothing on the right side. After this cath, the left hadn't changed an iota and the right was almost completely blocked.

What You Should Learn

Don't ignore the symptoms of a heart attack. Ultimately, this or other cardiovascular disease will eventually kill 75% of us who toil with diabetes. It is doubly threatening if you've had diabetes for a long time as your body might not warn you as easily as our more pancreatically advantaged friends.

Pro Tips: Type 1 in the Hospital

Going to the hospital is something everybody avoids, but sometimes it happens. If you are a Type 1, there is probably a better chance that it'll happen, and to make it go smoother, it helps to plan ahead.

In my case, the last few times I was in the hospital, I accidentally learned a few lessons that have made later stays easier. While your doctors and nurses will do their best for you, just like everything Type 1, some of it is up to you.

Having A Heart Attack? The Durham VAMC is Tough to Beat.

I've had heart issues going back to 2006 when I had a mild heart attack that was a result of being in a diabetic coma. While it happened again two more times in 2015, numerous tests showed no lasting impact. In fact, just a few weeks ago I checked with my cardiologist to see if there were any concerns from his standpoint about having elective surgery. There were none. I have had chest pain all along, but my cardiologist said it was of no concern, but he was careful to remind me of the symptoms of a heart attack and to take appropriate action if they occurred.

Then last week the usual chest pains seemed to be a little bit different. They weren't dramatic or greatly concerning - just simply annoying. But now they came with a twitch of pain in my left arm, and a mild twinge now and then between my shoulder blades. While no big deal separately, add them to together and while the pain was a 2 or 3 on a scale of 10, they got me to thinking that I should talk to somebody smarter than I.

The obvious choice is to go to the Emergency Room. When all you have for healthcare is the Veterans Affairs, that choice isn't exactly simple. If I went to a non-VA ER and my problem was not a true emergency, the VA might not pay for it and leave me on the hook for whatever that visit might cost. That amounts to a pretty big roll of the dice, and I'd been stuck once before, so unless somebody else made the call, i.e.: an EMS crew, then I was going to the VA's ER.

In my case, the nearest one is in Durham, NC - a one-way trip of 65 miles. I was feeling cruddy, wasn't sure it was an emergency, so off I went.

Durham VA Hospital: Awesome, Awful and Recommendations

Last Friday I had an appointment with my Endocrinologist at the Durham Veterans Affairs Medical Center. It was fantastic - she and I and an exceptional CDE (Certified Diabetes Educator) spent over two hours working together to find better way to manage my Type 1 Diabetes. No easy task given my constellation of difficult, unusual and conflicting complications. In my book she is a world-class clinician, technically astute, imaginative and empathetic. For somebody like me who cannot be fixed medically, the time I spend with her is a bright spot on the dark, scary and lonely road of diabetes.

The Emergency Room

But while I was there, something else was going on. I first saw it on Facebook - a story that went viral of some veterans waiting for care in the Emergency Room. What was shocking was an elderly veteran lying on the floor just a couple of feet in front of the reception desk. Here is an account that made it all the way to Great Britain.

Background

I am a disabled veteran and receive all of my medical care through the Durham VA Medical Center and the Raleigh Community Based Outpatient Clinic. I've had numerous appointments at Durham in the Endocrinology, Gastroenterology, Nephrology, Cardiology, Urology, Audiology, Orthopedic, Dental and Eye Clinics for the last 6 years. From a patient's perspective, I think I have an idea of what works well and where improvement is needed.

I have also been in the Emergency Room. Several times I made the 130 mile round trip to get care for minor things because it would take weeks to see my primary care physician. Four times somebody else took me. The worst was when gastritis turned into a diabetic coma. At the ER my blood glucose was 13 times higher than the upper limit of normal. The stress my body was under caused a heart attack. My kidneys shut down and it took over 6 gallons of intravenous fluid to get them restarted. I spent 10 days in ICU. But I was alive. I was alive because the Durham VA Medical Center ER team acted promptly, appropriately and professionally.

Other times when my problems were what are classified as "routine" in the initial triage that all patients receive, it was much like a typical ER. While admittedly feeling pretty cruddy, the waits are interminable, the seats breathtakingly uncomfortable, the experience endured only so that I could have a chance at feeling better walking out than I did walking in. Perhaps part of the problem is that the receptionists and triage nurses see people who are on the edge of death, horribly injured or in other exceptional distress. For those of us who are just "routine" we wait and wait and wait until those who are sicker get treated.

What happened last week to the ill veterans in that story was inexcusable. Equally unforgivable is that instead of getting off her lazy but and finding somebody - anybody - who could help those veterans, the lady who posted on Facebook was too busy taking pictures and being indignant to actually get those gentlemen some help.

The Big Picture

Like any large organization, the Durham VA Medical Center is a mixed bag. My Endocrinologist (who is also on the faculty of the Duke Medical School) and the Endocrine Fellows she trains are universally outstanding. Once while in ICU, she put one of the fellows on my case for a day with the instructions, "Don't break him." Though board certified, that poor fellow was scared.

I also have a Nephrologist who though on a fellowship is also top-notch. As my adventures in kidney failure inevitably spiral into a bad place, she takes great pains to make me a partner in my care. She explains the chemistries involved, the alternatives available to me and has earned my confidence that I am getting the best care available. That care is delivered with professionalism, compassion and in a way that assures me that she is going the extra mile.

On the other hand, there are more than a few things I would happily change. As a result of Type 1 Diabetes, I have some rather horrible and frequently debilitating gastrointestinal complications. Those entail frequent appointments in the GI department. Like many teaching hospitals, fellows, interns and medical students provide the bulk of the clinical care under the supervision of a more senior physician. While two sets of eyes on a case are usually a good thing, the frequent turnover of providers is not. I've had 5 different GI doctors, and with each change the progress that has been made with my old doctor is wiped out when the new one starts on my case.

After 6 years, 5 doctors and with my GI problems getting worse with no relief in sight, one of them suggested I see a gastroenterologist at the Wake Forest Medical School. He is reputed to be THE world leading expert on my particular problem. To send patients outside the VA when the needed care cannot be provided, something called "Veterans Choice" was created by Congress. If care was unavailable, would take more than 30 days to provide, then the VA would contract for that care and the veteran would get help. That request for me to go to Wake Forest was first mentioned to me on June 28, 2016. Two weeks ago I was finally given an appointment - May 31, 2017. That is 11 months if anyone is counting.

While fighting the bureaucracy to get that appointment, I came to the end of the line when I was told to call the Patient Advocate Office. They are the people dedicated to ensuring that difficult problems get resolved, logjams are broken up, or if not, a rational explanation is given to the veteran. I made the call. The phone rang and rang. Nobody picked up. After a couple of minutes, it didn't go to voiice mail - it automatically disconnected.

I was furious. Over a year earlier, in a Town Hall Meeting, I got up and mentioned that I'd tried to call the Patient Advocate Office at 3:00 one afternoon. I got a recording saying that they were closed for the day (but the recording said 4:30 was when their office hours ended). No voicemail, either. I suggested that they might want to use voicemail for times when nobody was available. I was assured that they had it.

Recommendations For Improvement

To better serve veterans, it might be useful if the VA thought a bit like their customers - the veterans.

1. In the military, somebody is always in charge. They also report to somebody. It's called a chain of command. Walk into any Infantry Company or Cavalry Troop and right inside the door for all to see are pictures of the chain of command. Walk into a VA clinic and the impression is that the receptionist runs it. Have a problem? Chances are the receptionist can't help, but the head of the clinic can. Post a picture and contact information for the person running the clinic. Add one for the person they report to, and so on.

2. Also in the military, leaders are readily identifiable. Sometimes it is by rank, or back when I was in the Army, leaders wore green tabs on their epaulets. At the Durham VA, you can't tell if that older gentleman in the tie is the Chief of Staff or a stock clerk in the canteen. For a patient, whether in a clinic or on a ward, the cacophony of scrubs, lab coats and various combinations make it impossible to tell who is a surgeon or an orderly. To patients, family members and the employees, that is useful information.

3. Fix the damn phone system. Finding the number to a clinic is next to impossible. The system is atrocious, there is nothing resembling a useful phone directory. The introductory spiel from the Hospital Administrator and the phone options runs nearly two minutes. If you really care (like the interminable recording states) then spare me the speech and help me to get the person I need on the phone in a timely manner.

4. Speak to veterans. Not in some formal advisory council meeting, not in a mailed survey, or by reading social media comments. Leaders from hospital executives to clinic and department leaders need to make time to get out of their office and speak to veterans. One on one. Face to face. Ask smart questions, like "what can we do better to help you?" or "if you were in charge, what would you change" or "tell me what you need that we aren't providing." Any decent Corporal worth his salt know how to do that. VA leaders should be no different.

5. Use social media. I'm on your email list - don't just use it to tell me about snow events. Got something coming up (like a Town Hall!) use it for that periodically. Put a functional calendar of future events on your Facebook page - don't use Facebook to only talk about things in the past that might have interested me.

6. Appoint a contact person for each clinic who can answer questions from veterans and family members. Many clinics don't run 5 days a week, and it is up to the veteran to figure out when it is operational, and to use that to get the timing right to ask a question.

Above all, for veterans the VA is an unfathomable bureaucracy. Sometimes we don't know what to ask. If we do, the most insanely difficult thing in the world is figuring out who would know, and even harder than that is to find them. If you can figure out how to overcome that, then in my book the VA would not only walk on water, they'd skip on whitecaps.

Welcome to the "Type 1 Twilight Zone"

It is a place not of control or calamity. A strange place where the patient is ill, but not sick enough to cure. It is where doing the best you can with cutting edge medical advice is often inadequate. It is where best practices of medical care, compassion and empathy are comforting and supportive but not enough to overcome uncertainty and frustration. It is my place - the Type 1 Twilight Zone.

BACKGROUND

I was diagnosed with Type 1 Diabetes in January, 1994 - just a few days after my 30th birthday. For the first twelve and a half years I used multiple injections of Regular and NPH insulin. I was among the very first users of the Dexcom Continuous Glucose Monitor - starting in the summer of 2006 but discontinuing it (not by choice) a few months later. At around the same time I started using a Medtronic MiniMed Insulin Pump and have been for the last 11 years. I currently use a Medtronic 530g Insulin Pump and Enlite CGM.

DISCLOSURES 

I applied for, and was accepted as a Medtronic Ambassador in the Spring of 2017. According to their web site, "MiniMed Ambassadors receive promotional items and educational material to use and share as the Ambassador sees fit. Ambassadors are not provided monetary compensation for their participation in this program. Opinions expressed by an Ambassador are based on the Ambassador's actual experience and are not necessarily the opinions of Medtronic MiniMed."

I have never received any compensation, promotional items, or anything of value from any company or organization related to diabetes.