Tuesday, April 30, 2019

The Exorbitant Elixir

Not unsurprising for northern climes, midcoast Maine had a snowstorm in early April during which there was a palpable sense of discouragement in the air. After the sunny and temperate weather the week before, people around me expressed disappointment and resignation. It has been a quite cold and wet spring. Rivers are flooding, plants are still barely emerging, and we are all longing for sunny weather and the heat of summer.

On the same spring snow day, I had unexpected news myself. I’d refilled my prescription for Levemir, long-acting insulin of which I take by injection twice daily. The text message confirmed the cost was $317 for one month's supply. I was perplexed. After a phone call to Harvard Pilgrim Health Care, I learned that my insurance deductible increased from $750 to $4,500 a year.

With a welcome surge in my business, my income tipped over $40,000 a year in adjusted gross income in 2018. That meant I lost the low-income subsidy that I’d enjoyed since I returned from Cambodia in 2016. That’s okay. I’d rather be working.

I settled up the tax bill with the Feds and reported the change to Healthcare.gov.  Now, in addition to doubling my premium to $1,000 a month, the deductible went up to 600%. High-deductible plans are a killer, literally. Just last week NPR ran a story about potential delays in diagnosis and access to medication that often resulted from high deductible plans. People in the middle-class often don’t qualify for rebates, patient assistance programs or other workarounds that exist as either a corporate marketing ploy or a charitable entity. With a dependence on expensive medication to survive, diabetics are particularly vulnerable.

Canadian scientists Banting, Collip, and Best, who discovered insulin, sold the patent in 1921 to the University of Toronto for $1 each. They believed that no profit should be derived from it. In my childhood, insulin was harvested from cows and pigs. Eli Lilly developed the first use of recombinant DNA technology to produce synthetic insulin (Humulin) in 1982. These high-tech medications are specifically formulated for different levels of duration and use. Generally, they work better for diabetics and have addressed the ever-expanding market needs generated by the increase in the number of Type 1 and Type 2 diabetics using insulin. However, the price point hurts.

The rising costs of insulin have generated controversy, especially in recent months. Finally, the American Diabetes Association testified to Congress about the costs of insulin in May 2018. The Attorney General filed a lawsuit accusing drug manufacturers Sanofi SA, Novo Nordisk, and Eli Lilly and Co of deceptively raising prices. In January,  the Health Care Cost Institute released a report that demonstrated, based on an analysis of healthcare claims, that insulin costs have effectively doubled since 2012.

There’s nothing quite like being sent a message that someone else’s profit motive is more important than your ability to navigate the financial realities of staying alive. That is not the case for me, but after 50 years my need for insulin is ingrained in my subconscious. In my guiding days as I prepared for multi-week trips in the Arctic National Wildlife Refuge, I would rise from the deep sleep nightmarish scenario with a terrifying realization I’d left my med kit at home (usually on the plane or the shuttle bus out to the wilderness.)  To mitigate the worry, I would pack and checklist the heck out of the supplies.

About an hour north of my home a  few months ago, on a work trip, I realized at lunchtime that I’d misjudged the amount of insulin left in my plastic pen delivery device. Due in part to being to me being distracted and a profit-driven design flaw from Eli Lilly, 8 remaining units (2 meal doses) in the pen were locked behind the rubber tip. I could have skipped lunch entirely, but instead took a break to head off to the pharmacy. The understanding pharmacist gave me a syringe and was nonchalant about my gratitude. Now, I carry one in the med kit, just in case.
8 units remain. You'd think a modest redesign
of the rubber tip could solve
that problem. 

The tension around accessing our exorbitant elixir, albeit mild in my case, creates just another stressor for the people like me who depend on life-saving medication. I could tell you about the number of campaigns on GoFundMe with insulin in the title (6,567) or that it’s reported that 1 in 4 diabetics are rationing insulin because of the cost, or by 2030 its projected that that half of the people who will need insulin (the market is growing in Africa and Asia) will not be able to afford it. I know my story is repeated in thousands of ways and across the U.S. and in developing countries.  In Cambodia, I could purchase insulin from a well-regarded pharmacy for about $30 a bottle. But there were poor people who couldn’t afford that. This situation feels like the rainy, cold weather we continue to have as April has come to close. The tree buds are closed up tight, holding their energy in until there is a promise of a warmer stretch.

However, I found my crocus. By pure happenstance, I found a secret, underground market for insulin. PK, who died at 63, had a family that cared enough to find a clearinghouse. The unused, unexpired and unopened vials and pens of insulin are collected by someone who finds the people that need it. I was able to procure a few months supply for a modest donation. If you read this and need help with insulin costs, let’s talk.

(Photo by Deanna Hartel, Lincolnville)
Courtesy of The Free Press
Taken after our spring snow! 

Saturday, March 30, 2019

Performance Based Management: Life and Death

~This is the second chapter of my year-long exploration of
living with type 1 diabetes for 50 years.~

Testing, and living with the results of those tests, is a constant element of living with diabetes. A small plastic case with an eye dropper and a test tube stood prominently on the bathroom counter of my childhood. I’d start the day by peeing in a cup, concocting a mixture of water and urine using the eyedropper, and drop a highly caustic tablet into the test tube. The reaction was immediate: bubbles, heat, and the resulting color to be matched against the chart, recorded in the log and delivered to the doctor during a visit.

This everyday routine has evolved into the 5-second blood test I use now. Those daily metrics culminate in the 90-day average of the HbA1c test. When a medical practitioner looks over these results, it often feels like a judgment day. The words I hear are often, “These numbers are too high.” I know I’m on the low range of unacceptable, and I stammer some rationale excuses and justifications while embarrassment, shame, regret, and fear toil and rise to the surface. I am completely below average and have been since I started tracking the results in 1999.

Samuel Rahbar, an Iranian researcher who eventually immigrated to the US, discovered specific hemoglobin anomalies in diabetics and refined the HbA1c test in 1968. The HbA1c is now the standard by which a diabetic’s self-management performance is based. The only way to study for the test is the diligence of every day and the commitment to managing the food, the exercise, and insulin. It’s largely an intuitive charting of math and sensation and recalibrating with the feedback to somehow get back on track when I’ve gone rogue into the landscape of what the hell.

On bad days, this can result in 5 tests a day to try and see how the progress is coming along with mitigation strategies. If the blood sugar is too high, I experience a general sense of stupor and an increased risk of complications. Too low and there’s an experience of unsettledness, panic, and the possibility of loss of consciousness.  The small drop of blood placed carefully on the thin plastic strip is the only way to know if your general intuition is on track. Sometimes it isn’t.

Testing strips are quite expensive in the United States. While the R&D to develop the process to deploy enzymes to measure the electrical energy in the blood was extensive, the manufacturing is cheap. Companies are estimated to generate an 80-90% profit margin on each strip. Constrained by budget, some diabetics base their self-management on a single point in time~like looking at your bank balance as an indicator of quarterly cash flow. The market has evolved a robust gray market for test strips where people can sell their unused strips (paid for by insurers) which sold to people with high-deductible plans looking to save.
Searching for testing strips for my specific meter became a preoccupation during my year-long stint in rural Thailand. Note that I could have replaced my equipment with what was readily available in the country, but I was stubborn and not paid much. Once my American stock ran low, I traveled south on a 5-hour bus ride to explore pharmacies in Bangkok’s various mega malls. Navigating through huge labyrinthian towers escalated through brilliant light and marble, I eventually found the motherlode at the pharmacy (half-price from what I paid in America), stocked up with supply for the next three months, embarked on other errands and sightseeing, returned back to Kampheng Phet.

I embarked on a rigorous regime living on the outskirts of this small rural city and buckled down on limiting testing to the morning and during times of the day when I felt uncertain. But, eventually, my supply again diminished and I had to find a more local alternative. Navigating the winding streets of the small city on my bike, where signs in unfamiliar text and landmarks remained in a hazy uncertainty, were a foray. On one visit to the largest local street market, where the damp burlap bags of croaking frogs on the sidewalks were positioned near their familial corpses sprayed and barbequing across a crux of skewers,  I noticed a larger established pharmacy on the corner. All sorts of medical supplies were packed to the ceiling. As I took it all in and wandered around, my prize sat tucked away in the corner. I had a local supply.

The results of my rigor: eliminating booze and bread, bicycling in the forest refuge every day and, maintaining a quiet, austere, and self-directed experience worked. The A1c reading that I had done just before I left Thailand was a perfect 6.5 and I’d lost 25 pounds. I was living on my own and on the edge,

Chuck Comstock lived as a hell-bent extreme adventurer who, after he died in 2000, was characterized by a mutual acquaintance as dying from “not managing his sugars”. When I lived in Key West in 1989, I remember another fellow pedicab taxi driver who lost consciousness while on the bike and disappeared. A physically unqualified truck driver killed a volunteer driver and a young boy on the Maine Turnpike in 2016. He was diabetic and out of control.

March was rough for self-management. A bit of stress, some bad choices, and an inexplicable, painful flare-up with my teeth created a context for a perfect storm of self doubt. In groping for context, I asked for an HbA1c test and the results were much too high. I increased my insulin dosage, slowed down, and determined to carry on. The tension is always there, the desire for normalcy, the thirst for autonomy and the aim for improvement. Diabetes both defines my life while I stubbornly refuse to compromise my life. Ultimately, I have to stay tuned to the numbers and hope for the best.


Thursday, February 28, 2019

An Introduction

After 50 years of starting every morning with an injection of insulin, I’m now qualified to receive a medal. This year of blog posts are a commemoration. My stories are of ups and downs, both emotionally and physically, of danger and complacency, of adaptation and resilience. I’ve had networks that have saved me and of loneliness that has challenged me. This is my tale.
I hadn't seen this when I named the blog in 2012.
From Leetrussel's Pinterest Board

I’ve had friends who I haven’t seen for a while ask me, “How is your diabetes?” to which I remain hesitant in how I respond. For me, the question reflects an interpretation of diabetes is something outside of myself, a temporary affliction of baggage that I need to carry around until I check in. In fact, diabetes is the secret, invisible ball and chain held within my skin. It’s bourne in life, every day, and never leaves the hidden pocket of my mind. Some days are better than others, but it is always there.

My routine attention to physical being never ends. Like doing the dishes. Every morning with a blood sugar check and an immediate sense of elation (I’m 114, normal!) or resignation (woops, 269, you’re at fault). The high readings sound like the voice of the doctor chiding me a bit for not adhering to the regime and begins the familiar refrain of needing to be better, do better and perform. The day unfolds: injections, coffee, breakfast, and projects.

The routine is impacted by external forces. There are times when you are running hard and things pile up. Perhaps you get sick or there’s stress that sends the sugars rocketing. There are times when you’re distracted and lose sight of the simple stuff, like going for a walk, that should be done every day. When the blood sugars won’t come down after bolusing, my body is the heavy weight of a cast iron skillet that has to wait on the stove until it cools down enough to clean. Then, when it’s ready, I can gently massage with the scrubby, gently season and put back in the cabinet for next time. In general, my dishes are routine but they never end.



In moments of transition, when I am traveling, preparing for a long day away from home or simply embarking on a new activity (and especially with people I don’t know), I am hyper-prepared. I button up, prepare for contingencies and leave the dishrack cleaned out and the bag packed. There are accidents, of course. One day in the Alaskan backcountry on a daylong ski trip with a group of casual friends, in a quick twisty moment and under multiple layers of clothes, the cannula at the end of the tubing for the insulin pump tubing tore away from my flesh.

Grumbling, I dismissed an offer of assistance and I headed off to a private area to bare my bruised stomach in the crisp spring sunshine. Fumbling for the supplies while on my skis, I prepped the site, and jabbed the needle in to get a clean route for the insulin, reconnected the tubing, pumped up to prime, fastened the tape and added some new duct tape for good measure. I took a moment to stretch, pack up and rejoin the group.

For me, living with Type 1 diabetes since 1969 is a constant thread in my life. It can’t be separated from my identity. It’s an obligation to myself and those who love me to stay the course of self-maintenance. I try to aim to the healthy choices, to stay on the path to light even through those moments where I feel a snuffer over the candle of optimism.

I can’t compare myself to other’s experience, but I remember a moment where I felt crystallized in my understanding of living with a chronic, life-long condition. At a political fundraising event for a progressive candidate running for office for the first time, Tim introduced himself and his motivation to run. “I survived cancer.”, he said, “and those of us who have been through that know that it rearranges your priorities”. He nodded to another colleague who also survived. They shared a bond then, an acknowledgment that they hadn’t died despite a horrible disease and a traumatic treatment regime. An experience that I wouldn’t wish on anyone.

At that moment, I realized that there may never be a day when I could be called “Diabetes-free” and see a stage of my life become a fading image in the rearview mirror. My dishes are along for the entire ride. This is mine forever.

What a nice ride I had! I unearthed this photo from the boxes
in my parent's basement and laughed about
the state of my right leg. To this day, still one of
the more scarred parts of my body. 

Saturday, December 15, 2018

What Resilience Looks Like

I'd been thinking about writing about the clammer that works the low-tide flats just outside the front yard.  I sit in my bathrobe, the sun rising gently, with a cup of coffee and wonder what my body would feel like if I had to do his job. Bending over repeatedly, sinking my clam rake into the mud and back, then picking through the cold silt looking for my livelihood while the gulls circled overhead.

I changed my mind on November 30 when I learned of my Alaskan friends who spent their morning quivering and rolling during a 7.0 earthquake.  It would still have been dark then. Kids were in school, people were on their way to work, and then their world changed.

I tuned into the Alaska news and remembered my experiences with earthquakes. Feeling the roll build gently under your being, or sitting at my desk on the fifth floor and watching the computer screen rock back and forth. In the seconds of any quake, you wonder if this was going to be a big one. You remember the idea of a go-bag that never manifested. As the shaking subsided, my heart rate returned to normal and the awe of being in touch with nature returned.

While I am growing to love the old granite mountains and the coast of Maine, I miss being so close to the edge in Alaska. I miss the moose in the front yard, the silty ice bits in Cook Inlet on a sunny winter day and the aplenglow view of Denali from downtown. The raw evolution of earth itself is present every time one went out to the rivers, the mountains, the sea and the neighborhood.

I also miss the tough, goddammit I'm an Alaskan mentality that separates the extreme northerners from the rest of the "Lower 48."  Once the fractured glass had been swept up and everyone was deemed safe, Alaskans created memes.

Monday, November 5, 2018

Getting Ready for Winter

Mainers are in a flurry of getting ready. An early cold snap and a dusting of snow on the deck a couple of weeks ago escalated the natural rhythm of the season. Firewood got gathered and stacked. Hatches were battened. A frenzy of yard chores, crystallized by the crisp blue sky days of autumn, helped tidy things up for the inevitable frozen yard.  Stocking larders, filling tanks, unpacking and sifting the winter gear consume money and time. Will winter be a series of epic blizzards and winter wonderland or a dark and depressing mix of rain and ice?
Photo from a recent road trip south.
No idea who Tim Good is, but the image on the sign
looks suspiciously like a wine glass, even though it's supposed
to be a guy in a suit. 

Amid the chores, there is a clatter of information about what results this upcoming election will bring. There are theories that Americans,  weary of bombastic and vitriolic rhetoric, will aim for a change in leadership.

There are large sums of money, both Republican and Democratic, invested in campaigns and numbing doses of bashing ads. Maine's second congressional district race, representing a vast swath of counties north of the typically more urban, southern coastal areas, is a prime example of the largest campaign spending of any election in Maine history, funded by dark money.

Georgia's election, in which a (Republican) Secretary of State is running for Governor, is under fire as the state's new "exact match" law created over 50,000 voters with contested applications, 70% of which were African American. This is matched by initiatives in North Dakota, Florida, and Kansas as noted in last week's FreshAir episode.

We can only wait. Then, we will know if we need to invest in a new snow shovel or simply breathe a little easier with the relief from fuel bills.

Alaska's early voting stickers!

Sunday, September 30, 2018

The Power of Nature

View from the porch at the AMC Gorham Chairback Lodge.
On the final feet of an extraordinarily challenging hike, the sun was low on the horizon in the final mile back to camp.  Physically out of shape, the earlier miles of the trail entailed a punishing stretch over and around root bound rocks. I was perpetually at the rear, not able to catch up with my new found hiking buddies. My lungs were laboring under exertion and asthma. My pants were sweaty and tight around my waist. I was feeling very old, far away from the lithe and more nimble self of past years and with head down to a tenuous balance of what was just before me and my capacity to continue.

We arose out of the small creek valley, out to the opening where the trail crossed the road in the final stretch home.  At that moment, the waning sunlight beamed through the still green leaves. Vibrant, effervescent, glowing, verdant, rich and hopeful. Despite being the last of the group and slightly overdue on the timeline, I had to take a minute to breathe in the wisdom, glory, and preciousness of this fleeting moment. Summer was ending and the transition of the early fall was underway. I was surrounded by reveling in life.

Storm clouds brewing over Brunswick, Photo BDN/ Jennifer Hicks 
Dramatic weather has its own emotional reaction. The anticipation heralded in dark, black incoming storm clouds led to a hastening fear, and then the sudden flailing of branches as they whipped across the yard. On that day in September and after only 10 minutes, the house across the street had two large trees come down on its roof. I came out of the house and gathered with the other stay-at-home moms and grandmoms, and then we watched together as the tree service came to do the clean-up.

September ended in a flurry of work deadlines, travel to a tiny house festival, and stretched into the first week of October with a move to a new place and capped with a preparation-intensive, age-appropriate medical test.  Now, I am breathing again. My own recovery and clean-up have begun. 

Hours later, clean up in the hood. 

In these rapidly dwindling days of early Autumn, the leaves have begun their changes to the vibrant red, orange and gold. My head is up, now looking to the horizon.  

Fall colors in the garden. 
View from the new house.