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Me and My Money…a child’s story of diabetes

M&M Cover 300 small

Copyrighted in 2012, Me & My Money…a child’s story of diabetes, took two years to write…

From birthing thoughts, jotting ideas, typing a manuscript, carrying a daily journal, contacting an illustrator,  building the manuscript, proofreading and editing again and again and again and…you get the idea…this dream came to fruition.  It had do be done.  There is no other book like it — as far as my research goes — that reflects, mimics, or encourages diabetic children, T1Ds.  The book is now available to the general public in paperback form.  Celebrate!!

Submitting to a marketable world with a targeted audience, networking, promoting, speaking, through the main character, Kali with her dog, Money, brings attention to the increase of diabetes in animals – up 300% this past decade!

Through the wonderful insightfulness of illustrator Amy Pichly-Meyer who is responsible for the clarity of expression with the cover design, along with all 37 colored  illustrations, this book was built for you.  I am thankful for her friendship and abilities.

Briefly, the main character, Kali, is presently a fourth grader.  She was diagnosed with diabetes at the age of two.  Her rapid growth with blooming and wizened independence results from learning how to take care of herself.  Wayne, a best friend, knows her very well and together they embark on adventures through Wayne’s hobby, their separate and shared responsibilities, mutual friends, and more.  But Kali cannot forget her special pack!  She must carry this with her everyday, everywhere.

This book, along with the recent publication of Me & My Money Too…a child’s story with diabetes, are tools to understanding this disease.  Minute-by-minute self-care is introduced and forthcoming in this illustrated, easy-to-read chapter book, 104 pages long, appropriate for 8 years olds and available at Amazon.com in paperback edition as well as Kindle e-readers.   Local bookstores carry copies as well as local libraries with requests.  Please enjoy the following Chapter excerpts…

Chapter 1, Book One

Due to keeping up with my chores, I occasionally have some change in my pocket.  That’s because my parents give me a weekly allowance that I can spend when I want.

“Make sure you spend wisely,’ Dad says.  I’m not quite sure what “spend wisely” means, but I think I do okay with what I have.  For instance, one of my friends from school, Wayne, asked me to go to the hobby store one Saturday afternoon.  Because it is school summer vacation time, we could go almost any time, depending on our parents.  However, Saturday’s are best.

Wayne and I go way back, to kindergarten.  He is the only red-head kid in our whole grammar school, never mind our fourth grade.  He’s a full blown carrot top with thick hair in wavy curls.  This makes him real easy to spot in a crowd.  The girls in our class like Wayne more than the boys do.  I think this is because he has good manners and is polite.  It is either that or his clear sky blue eyes that sparkle.  Even his eyelashes are orange, matching his hair.  Most girls I know like blue eyes.  I never thought about it much.  My eyes are dark brown to match my light brown and blonde streaky hair.

Wayne is a pale looking kid.  Most of the time, the only color on Wayne’s face is because of his tannish-brown colored freckles.  I swear, if he didn’t have freckles, he would be white as a ghost!  I tease him about that, pretending that I can’t see him sometimes.  We laugh.  He blushes all red and pink.  It’s funny to see.  Wayne is shorter than I am — for now.  He teases me about my long brown hair — so flat, so straight and thin.  “There’s nothing to your hair,” he tells me as he quickly flicks it in the air.  “You don’t even have to brush it.  Your hair just hangs there off your fat head,” he often tells me as if I need to be reminded. 

I think Wayne is jealous of my straight hair.  Brushing his hair is a struggle because it is very thick.  Mine is a lot easier because it is stick straight.  He hates when his mother brushes his hair because “she always pulls it out of my head,” he told me one time.  “And you have a chubby little pug-nose.  Not like my pointy one at all,” he compares.  “But you get a tan in the summer.  I don’t tan, I burn.  It’s awful,” he explains.  That is true.

One summer that I remember, his mother covered his face and arms with white suntan lotion so  he wouldn’t get burned while playing with me in my back yard.  He looked so funny.  That stuff made him smell like the beach.  I laughed at him.  He didn’t like that.  And after a while, the suntan lotion disappeared.  But we stayed friends.  He wears that stuff all the time.  Sure, I use it too, but when I forget to rub it on my skin, I don’t get too worried.

“I guess you look like your father,” I told him because I think he does.  “I look like my mother,” I said.  And that’s okay with me because my mother is beautiful.  My Dad’s okay looking — for a Dad.  Sometimes he has a moustache.  Mom told him to shave it off because it made her sneeze when they kiss.  Eeeuu!  Sneezing and kissing, yuck!

“Kali,” my mom called up the stairs.  “Wayne is on the phone for you.”

“Okay.  Thanks.  I’ll get it up here,” I told her.

“Hi Wayne.  Wassup?”

“Hey.  Can you come to the train store with me today or what?  I’m looking for a certain model train engine and I think the Viking Hobby Store will have it.”

Well, I have no particular interest in model trains, so I knew I wouldn’t buy anything but I would go along with him anyway.  This is a wise decision.  After all, he is my very best friend.  Very best friends do things for each other whether we need to or like to or not.  It was Saturday morning anyway.  Cleaning my room could wait until I got back.  I was thinking, planning.

“Mom, Dad, is it okay with you if I go to the hoppy store with Wayne today?  He thinks he found the perfect train engine for his set.  He wants me to go and help him check it out.”

“I don’t mind.  Is your room picked up?” Mom asked.

“Not all the way yet, Mom,” I replied.  “I can finish when I get back.  All I have to do is fold my clothes and put them away.  A load of my socks and some t-shirts are still in the dryer.”

“Well, all right.  Did you ask your father?” Mom wanted to know.  “And don’t forget to take a snack and some juice boxes with you.”

“I know.  I already have a pack of peanut butter nabs in my sack with some water.  I don’t know where Dad is.  I thought he was in the kitchen with you.  Maybe he’s in the garage.”

“Okay,” continued my mother.  “If you don’t see your father on your way out, I’ll tell him.  If you do, please remind him that we’re going shopping today.  Oh, are you and Wayne taking your bikes or walking?”

“I think we’ll walk.”  And out the back door I went.

Chapter 2

Wayne lives four houses away from me.  I took the short-cut over to his house through a wildflower field.  I often come here to pick my mother some flowers.  I like to pick flowers for her.  There are all kinds of wildflowers in this field: yellow ones, pink ones, purple ones with yellow centers.  I don’t know the names of these flowers, I just know they are pretty and Mom likes them.

After I met Wayne on the front porch of his house, we proceeded to walk to this particular ‘train store’ as he calls it.  It is really a hobby store that has lots of other things of interest besides trains.  I’ve been in there with one of my older cousins.  She was looking for some particular, special types of paint brushes made with camel’s hair.  I thought that was cool — paint brushes made out of a camel’s hair!  There are small glider planes in this store with hand-held motor devices; there are different kinds of wood burners and wood carving tools; there are even lots of different colored rubber fish bait things — lures.  I liked those because they are shiny, squishy, and they squiggle.  Things that would attract a fish — go figure!  Wayne had been going on about a certain model train engine he saw in here a while ago.  It took him weeks and weeks to save up his allowance money to buy it.

“Hey, before we walk too far, is your insulin pump filled up?” Wayne asked.  “I hope it doesn’t beep like crazy while we are out.  I would hate to have to leave early so you could fix it.”

“Yes, it’s fine.  I filled it up with insulin yesterday morning and changed the needle site.  We are good to go!”  I planned this on purpose.  I knew he would ask.  I am diabetic.  Wayne knows.  Among many other things, I do take care of myself and my diabetes.  I have to test my blood sugar levels many times each day.  Diabetes is a disease that causes me not to digest food properly.  Because of that, I wear an insulin pump.  I used to have to take insulin shots before I got the pump.  Having the pump is much easier.  An insulin pump squirts insulin into my body, automatically, a tiny bit at a time.  A “squirt” is maybe the size of a pencil tip or the size of a period at the end of a sentence.  My parents had to give me insulin shots before I learned to give them myself.  I still keep syringes handy, in case the pump breaks down for whatever reason.  This is called having “Plan B” which is important. 

Read more of Kali’s young life with diabetes in “Me & My Money…a child’s story of diabetes.”  Available at Amazon.com.

T1D Heart Sense

Protecting your heart is very important, wouldn’t you agree?  That’s what “heart sense” is all about inclusive of diet and exercise.  Even babies born with heart defects are immediately cared for if and when needed.  Young children, older children, adolescents, young adults, middle-agers, older folks have all heard or read somewhere in their lifetimes about taking care of their hearts.

So, let me briefly tell you my heart sense story….

As a T1D diagnosed in 1959, it wasn’t until about the year 2000 that I thought I should see a cardiologist.  Oh, my heart was fine as far as I could tell.  At least I felt fine.  My diabetes was under control.  But, being “proactive” about my life this long as a diabetic, I thought that seeing a cardiologist would be beneficial, especially for my future.

The medical insurance process is tedious and long.  Nothing new.  I had to make an appointment with a General Practitioner.  Of course that individual wanted to know “why.”  Explaining my “proactive beliefs” after having successfully lived with diabetes for over 40 years at that time, that doctor agreed.  A referral was faxed to a cardiologist of whom I never met.  No problem.  He or she was “in my medical insurance program.”  Meeting him or her was not a problem.  I was interested in his or her viewpoint concerning my heart’s longevity equaling my life’s longevity.

Happily showing up to the designated appointment, not one but two nurses met me inside the office door.  I thought that a little strange.  A gut feeling. One left while the other led me into an examination room directing me to remove all my clothes – all of them – and to put on a hospital “johnny,” leaving it open in the front.  Then she left.  Cold and naked, I anxiously waited for this unknown, unmet, male heart expert to enter.

He did.  His stature was tall and thin with white hair.  I watched him as he immediately skittered over to the exam room’s conveniently placed computer against a far wall.  He never looked at me.  The nurse that told me to become naked suddenly brushed in the room, stating to me that “you’re not covered.  Your insurance will not cover this.”  BAM!

As soon as the cardio guy heard this, he left, too quickly, still not looking at me.  And the nurse  speedily left, right on his coattails!  WTF, man?!  I was alone.  Almost horrified, and extremely puzzled, I dressed with the deafening silence of that room.  Making my way to the corridor, I peaked through the doorway right then left.  No one was there.  The place was completely abandoned, the whole floor was quiet as I imagina a mausoleum could be.  I could not – and still do not – believe to this day that that deflating experience happened.  Never never never having heard from these characters, these participants in my important health care, nothing happened.

Moving on to 2017, now having lived 60 years with diabetes, a new insurance plan got me what I needed.  I almost gave up…on myself!  Not good.  All in all, this latest expereince was 100% better and I am well.  I am going to live to be 100!  Whew.

Just sayin’…. A. K. Buckroth (#buckroth)

 

Pertaining to T2Ds: https://www.foryoursweetheart.com/?&utm_source=bing&utm_medium=cpc&utm_term=diabetes_and_heart_disease&utm_campaign=Unbranded_Sweetheart_[exact]&gclid=COmOy87UhNcCFZDbDQodlNUPNA&gclsrc=ds

“For someone with T1D,the number of years with T1D increases risk for CVD. T1D associated neuropathy can impact resting heart rate and peak heart rate and add complexity to diagnosis of cardiovascular disease.”

Urban Diabetes

Have you ever heard of such a thing…”Urban Diabetes?”  I have not.  Until today.  With that being written here’s a link for you to visualize this subject…. http://www.citieschangingdiabetes.com/

Norvo Nordisk, one of many a pharmaceutical companies in the world, began 90 years ago!   [“It began with the two small Danish companies Nordisk Insulin Laboratorium and Novo Terapeutisk Laboratorium founded in 1923 and 1925, respectively. The two companies started the production of the revolutionary new drug insulin that had just been discovered by two Canadian scientists.”]

“Nearly two-thirds of all people with diabetes live in cities. It’s an emergency in slow motion. But urban diabetes is not inevitable. If we work together, we can create cities which help us live more healthy lives.”

Check it out at: #UrbanDiabetes in 75 seconds.  I’m a T1D, also a life-long ‘urbanite!’  How about you?

Just sayin’…A. K. Buckroth

What I left with…

Let’s Crunch for Fitness!
…through the JDRF typeonenationsummit this past Saturday, August 26, 2017….
Walking in the front doors to the Sheraton Grand Hotel that morning, greeted by the lovely young T1D, Miss California, vendor after vendor could be seen downstairs.  They remained busy conversing with numerous early arrivals once again at this year’s event.  I was one of them.
Having to wait in a brief line at this one spot, I listened to what the vendor, Karyssa, had to say.  A most enticing, personable vendor representative from a local Crunch Fitness appealed to my thoughts/inspirations of having a trimmed “Tamara Berg” body.  (Ms. Berg is a local weather forecaster/predictor in Sacramento County, CA, with KCRA3 News.  If you saw her, you’d know what I’m talking about.  Although I am close to 20 years older than she, age does not matter.  Heck, I wouldn’t mind being a hanger in her closet!)
To go on, a simple google address below will help whet your appetite about thetypeonesummit and its numerous and varied vendors.   That’s if you need a whetted appetite, lol.
“Embrace A No Judgments Philosophy
Positivity
“We are nurturers: we seek only to encourage, entertain, and empower.
Inclusivity
“Here we keep open minds. There is no one type or way in our diverse community. Come as you are!
Fun
“We know serious fitness is hard, but that doesn’t mean it can’t be an edge-of-your-seat, can’t-get-enough, look-forward-to-your-workouts party.”
I’m gonna give this a try, beginning tomorrow, August 28, 2017. If you don’t hear from me before too long, think of me – “crunching,” lolol….A. K. Buckroth.
“norcal.jdrf.org.”
“crunch.com
#CRUNCHLIFENOT NUMBERS”
Just sayin’… A. K. Buckroth

Diabetes Author, A. K. Buckroth, Upcoming 2017 Appearances

The second half of 2017 continues to move forward with appearances of author A. K. Buckroth.

  • August 24, 2017 HAS BEEN POSTPONED to Thursday, August 31, 2017…. Diabetes Talk: T1D vs. T2D, 1:30pm – 2:30pm 3:30pm – 4:30pm ± in the Brookdale Senior Living Center, 7414 Stock Ranch Road in Citrus Heights, CA.  Book give-away along with hand-outs regarding the international sign and color for diabetes, meal planning discussion/information, carbohydrates in alcohol beverages, the JDRF (Juvenile Diabetes Research Foundation) and more.  Audience shares encouraged.
  • Saturday, October 14, 2017 – Walnut Grove Library, 14177 Market St. P.O. Box 40, Walnut Grove, CA, 95690; 1:00pm – 5:00pm.  “Authors Showcase” = Numerous authors will be available to share their books.
  • Saturday, November 4, 2017 – Fair Oaks Library, 11601 Fair Oaks Blvd., Fair Oaks, CA, 95628, (916) 264-2770; 12:30pm – 5:00pm.  “Authors Showcase” = Numerous authors will be available to share their books.
  • Saturday, December 9, 2017 – North Highlands-Antelope Library, 235 Antelope Road, Antelope, CA, 95843, (916) 264-2920; 2:00pm – 5:00pm.  “Authors Showcase” = Numerous authors will be available to share their books.
  • Saturday, December 16, 2017 – Sylvan Oaks Library, 6700 Auburn Blvd., Citrus Heights, CA, 95621, (916) 264-2700; 2:00pm – 5:00pm.  “Authors Showcase” = Numerous authors will be available to share their books.
  • Book presentations with readings, autographing and sales will be available at all events.  See you soon!

“On the Road with Type 1 Diabetes )T1D) By Eileen Crowley • JDRF

Thank You Paul Sparks!

“Just A Spoonful of Sugar…” JDRF Update

Book Marketing

Continuing my ‘book marketing procedures,’ I am once again engaged in coordinating numerous “Authors Showcases” at local Sacramento County, California libraries.  Promotion of my four award-winning books (www.mydiabeticsoul.com) is acceptable in such a free, and public venue.  Encouragement and attention increases in such a familiar setting with numerous author participants and the general public visitors.  Libraries are happy places.

As a ‘free-agent,’ sole-proprietor, self-published author, distribution and supply of my books is up to me and only me.  When I began this trek in 2010, it was new to me, a bit frightening, unfamiliar.  Thanks to my Masters Degree program (University of Pheonix, 1999), I gained the confidence required with public speaking.  Thanks to a personal friend, also a self-published author, for leading me to my first writers meeting and club, I joined and became not only acquainted with other writers, published and unpublished, but my yearly membership lasted nine years leading me to marketing and promotional venues for all its members.

I like to think I help the general public become aware of my books (subject matter is T1D – Type One Diabetes) and their subject matter, the cost of each book and where to find them.  Along the way, many other authors are consistently invited to participate to do the same.  This process of multiple participant invitations continues to be more comfortable for me, having another person, specifically and author or two, to share in these experiences.  It’s happy work.

For instance, an upcoming “Authors Showcase” with twenty authors is taking place at the Carmichael, California Library on Saturday, August 5, 2017, between 1 & 4pm.  Other such events are in the works as well.  Twenty individual authors, coming together in one place, most having the same dream as I – to promote out works, speak to individuals about out artistic values and beliefs – the whos, whats, whens, wheres, hows, and how muches involved in such a career.  After all, writing is an individual personal art.

Libraries are free, comfortable, accommodating, safe, and easily accessible.
Other book marketing venues – with or without a price tag – have been city and country fairs with or without my supplying a personal E-Z up (tent); private speaking engagements in Church (Holy House) basements; and Assisted/Independent Living Centers where the residents are absolutely thrilled to listen about my books.  All it takes is a little time for  research location of resources, a hone call, and your in!

My next marketing venture is to gather individual writers from separate groups/clubs to join in an event.  With numerous writing groups and clubs in this area, I wouldn’t think the opportunity would be too difficult.  There is the beloved NCPA (Northern California Publishers and Authors Organization) CAW (California Writers), GCW (Gold Country Writers), SSWC (Sacramento Suburban Writers Club), SIC (Sisters In Crime), and others.  This twinkling idea will grow – that’s how I work, with my brain.  Heck, it’s appealing to me, encouraging, insightful, happy, especially when others are involved.

Just sayin’…

A. K. Buckroth

NEWS: From The Juvenile Diabetes Research Foundation

Cell Conversion Could Be a Change for the Better

Can the loss of functional beta cell mass in T1D be reversed to restore insulin production? That is a fundamental question for those working to eliminate the disease; and JDRF is supporting research that could provide some answers.

Unlike some other cells in our bodies, insulin-producing beta cells don’t replicate readily, especially as we age. That’s a problem for researchers who are working to cure T1D by rebuilding functional beta cell mass lost to autoimmune attacks. But some investigators have noticed that, with the right encouragement, other islet cells can change identity and take on the characteristics of beta cells, including insulin production. JDRF is supporting several projects seeking to exploit that ability, hoping to regenerate beta cell mass. Two JDRF-funded investigators recently announced they’d found ways to chemically stimulate pancreatic alpha cells—the cells that normally produce glucagon—to change into insulin-producing beta-like cells. French researcher Patrick Collombat, Ph.D., found that GABA, a naturally occurring chemical and common dietary supplement, triggers the conversion of mouse alpha cells into beta-like cells. Treating diabetic mice with GABA fully restored beta cell mass and reversed their diabetes, and human islets transplanted into mice appeared to respond in the same way as the mouse islets. Investigator Stefan Kubicek, Ph.D., at the Austrian Academy of Sciences realized similar results using a type of FDA-approved anti-malarial drugs called artemisinins. These results suggest it may be possible to “retrain” alpha cells that continue to survive in the pancreas of a person with T1D into insulin-producing cells, a critical step toward a cure.

Next steps for both investigators include working to better understand the processes and mechanisms underlying the alpha-to-beta cell changes, which could help identify improved compounds that are able to trigger the same alterations. Continued research could also enable them to determine how best to use these compounds to treat the disease. They’ll also investigate whether the changed cells can reliably reverse mouse models of T1D. Most importantly, these compounds, which are already in use in humans, may be moved quickly into clinical testing for the treatment of T1D. Restoring functional beta cell mass and renewing the body’s ability to produce insulin is a high priority for JDRF because it would reduce or eliminate the daily burdens and hazards of managing blood-glucose levels. Even partial restoration or maintenance of beta cell function could offer significant benefits to people with T1D, including slowing or preventing progression of the disease, reduced insulin requirements, improved glucose control and a lower risk of complications. Find out more about JDRF’s Beta Cell Restoration Program at jdrf.org.

Why is this important?

Restoring the body’s ability to produce insulin will enable people with T1D to more easily manage their blood-glucose levels and may ultimately provide a cure for the disease. To do that, it’s necessary to have a sufficient number of functional beta cells, whether they’re naturally produced, chemically transformed or implanted. Once we find ways to restore and protect functional beta cell mass, the burdens, limitations and fears associated with T1D become things of the past.

By Eileen Crowley • JDRF

READ THIS! “Making Insulin Affordable” By Fran Quigley

About the Author:

“Mbolonzi Mbaluka understands. A Kenyan living with type 1 diabetes, he has had to skip insulin injections, sometimes because he could not afford the cost and sometimes because local hospitals ran out of stock. A fellow Kenyan patient recently died after going two months without insulin, which in many countries can cost up to 50 percent or more of the average income. For example, in Brazil, insulin and supplies can cost over 80 percent of an average income. “The insulin and the equipment together are just not affordable for many,” Mbaluka says.

“Insulin is a pancreas-created hormone that allows the body to absorb and deploy sugar from consumed food. For people with type 2 diabetes, the pancreas struggles to keep up with the body’s insulin demand, either because the pancreas is not producing enough or because the body has developed insulin resistance. For persons with type 1 diabetes, their body’s immune system has damaged or destroyed the insulin-producing cells in the pancreas. A lack of insulin causes blood sugar levels to rise, damaging the heart, kidneys, eyes, and nerves. Over 400 million people globally have diabetes. Lack of widespread testing makes it hard to apportion the percentages between type 1 and type 2, but the majority of those people have type 2 diabetes. And according to some estimates, half of those who need insulin cannot reliably get access to it.  People with type 2 diabetes often need to take insulin shots on a temporary or permanent basis. For people with type 1 diabetes, the equation is much more uniform, and more stark: they must inject insulin in order to stay alive.

“The discovery of insulin in the 1920s by a University of Toronto research team is one of history’s great pharmaceutical success stories. Orthopedic surgeon Frederick Banting and medical student Charles Best were able to extract insulin from an animal pancreas and inject it into a diabetic human, a groundbreaking advancement that earned Banting the Nobel Prize. Suddenly, a fatal disease became a survivable, chronic condition—as long as the insulin was available to the patient.

“The researchers were ideologically opposed to monopoly patenting of biomedical discoveries, but they were eager to see that wide distribution begin as soon as possible. And so, the researchers took out a patent for insulin, which they promptly sold to the university for $1 each. The plan was for the university to partner with pharmaceutical companies that were prepared to mass produce and distribute insulin. (A few decades later, Jonas Salk would famously refuse to patent the polio vaccine.)

“The researchers who discovered insulin were ideologically opposed to monopoly patenting of biomedical discoveries.

“For a while, the plan worked. Insulin became widely available and affordably priced. It was even improved upon. Innovations reduced the frequency of needed injections. Soon, the first human insulin and then synthetic insulin, known as analogues, replaced the original animal-extracted version. Yet those changes also caused problems. Each improvement allowed for corporations to take out their own patents on the new versions, and the price began to increase. The far-cheaper former versions of insulin, which experts generally agree were not significantly less effective than the enhanced iterations, disappeared from the market.

“Although the changes in insulin over the years have brought some benefits to patients, some experts say that the insulin producers’ tactics have corrupted the original public health vision of the medicine’s inventors. “I don’t think it takes a cynic such as myself to see most of these (insulin) drugs are being developed to preserve patent protection,” Harvard Medical School professor David Nathan told The Washington Post. “The truth is they are marginally different, and the clinical benefits of them over the older drugs are zero.”

“Yet the three main manufacturers of insulin—Eli Lilly, Sanofi Aventis, and Novo Nordisk—have dramatically raised prices on the newest versions. A 2016 study published in the Journal of the American Medical Association showed that the cost of insulin in the U.S. almost tripled between 2002 and 2013, and prices have continued to climb since. A U.S. patient’s out-of-pocket cost for a month’s supply of Eli Lilly’s Humalog can be over $400.

“For the drug companies, insulin is a hugely profitable product. Although manufacturers keep the cost of insulin production a tightly-guarded secret, U.S. prices are likely hundreds of times higher than the expense of making the drug. With annual revenues of $31 billion and growing, insulin is one of the highest-grossing medicines in the global market.

“But for patients who are dependent on insulin, its cost is creating a crisis—and not just in low-income countries but also in the comparatively wealthy United States. Increasingly, a lack of insurance coverage for the medicine or high-deductible coverage leaves people with diabetes paying as much as half their income for insulin. Patients report skipping doses, injecting expired insulin, and even starving themselves to control their blood sugar. Some patients are intentionally allowing themselves to slip into the life-threatening state of diabetic ketoacidosis just so they can obtain free insulin samples from emergency rooms. Not surprisingly, physicians report seeing more patients in distress because they can’t afford their insulin.

“Americans with type 1 diabetes are particularly anxious over the likely repeal of the Affordable Care Act, which protects them against coverage denials because of pre-existing conditions and against lifetime caps on coverage. Amy Leyendecker, who lives in Elizabethtown, Kentucky, currently has most of her insulin and equipment costs paid by insurance provided by her husband’s employer. But she has been without health insurance before, and is anxious about what may happen when her husband retires in a post-ACA world. “I have a five-month stash of insulin in my refrigerator that a friend brought in from outside the U.S.,” she says. “This is life-and-death for me.”

“THE PUSH FOR LOWER PRICING”

“Among those fighting for more affordable insulin is T1International. Elliott and Mbolonzi Mbaluka are active members. The group’s founder and director, Elizabeth Rowley, began the organization as a blog, but she quickly discovered that there was a global population of persons living with type 1diabetes eager to connect—and to speak out. One core purpose of the group is to provide a forum for those patient voices. “There are a lot of difficult challenges people with type 1 struggle with,” Rowley says. “And number one among those is that the prices for insulin and equipment are just far too high.”

“Rowley and her colleagues try to channel widespread frustration into focused activism. T1International’s detailed toolkit for advocacy includes global case studies of successful campaigns for better insulin access, tactical guidance, and tips on dealing with elected officials—“Sometimes you have to make the politician think it was their idea.” They collect data on insulin and supply costs, publish accounts of patient experiences worldwide, and even steer U.S. patients toward the attorneys who have filed a class action suit against the insulin manufacturers. That lawsuit, in the U.S. District Court in Massachusetts, alleges price collusion among the three major manufacturers, citing years of remarkably similar price increases by Eli Lilly, Sanofi, and Novo Nordisk.

“T1Inernational’s support of that litigation, and its outspoken criticism of insulin pricing, put it squarely at odds with the pharmaceutical industry. That also makes the group different from most patient advocacy groups. Groups including cancer patient groups and allergy and asthma patient groups have come under criticism for not speaking out in response to drug pricing issues. Most even declined to weigh in even during the recent high-profile Epi-Pen and Martin Shkreli “pharma bro” debates, in which triple-digit drug price increases led to public outcry and Congressional hearings.

“In fact, patient groups often vigorously support the pharma industry agenda, while at the same time receiving significant pharma funding. A 2016 report by the U.S. advocacy group Public Citizen revealed that at least three-quarters of the patient groups who actively opposed an Obama administration proposal to reduce Medicare drug expenditures received pharma industry donations. Another study showed that over 90 percent of patient groups participating in a discussion of FDA drug approval reform were pharma-funded.  Most patient groups that opposed California’s 2016 ballot measure to regulate the medicine prices paid by state government proved to be heavily funded by pharmaceutical corporations.

“Not surprisingly, access to medicines advocates report that patient group representatives privately admit that they won’t speak out on drug pricing for fear of losing state funding. That fear is well-founded. The U.S. National Multiple Sclerosis Society endured push-back from its pharma funders when it dared to mention concerns over the cost of multiple sclerosis drugs that average $78,000 annually, a 400 percent increase in little over a decade.

“Patient group representatives privately admit that they won’t speak out on drug pricing for fear of losing state funding.

“For patient groups, the pharma industry is the best source both for operational funding and the drug donations that can be shared with desperate patients. So most groups choose to accept the funding and devote themselves to patient education and direct aid, muting any criticism. T1International made the choice to favor advocacy, but it was not an easy one. Elliott recalls an early board meeting where he argued for a focus on patient service mission instead. “I am glad I was outvoted,” he says now. “T1I fills a much-needed need in the diabetes patient community.”

“T1International refuses on principle to accept pharma industry donations. “Even if they don’t force you to take certain positions, it is human nature not to want to bite the hand that feeds you,” Rowley says. But that choice has implications. Although pharma-funded organizations such as the International Diabetes Federation and the American Diabetes Association are well-staffed, T1International gets by with an all-volunteer workforce, anchored by Rowley’s 40-plus hours of unpaid labor each week.

“She and other volunteers continue to spend those hours ratcheting up the pressure on lawmakers and companies to address insulin pricing. They push for congressional hearings on the alleged industry collusion, expose the limitations of well-publicized corporate drug donation programs, and build a social media community around the theme of #insulin4all. And they are giving voice to the argument that essential medicines should be once again a public good, not a for-profit commodity. “It is a tragedy that a drug like insulin, invented by people who were motivated by a goal of access to all, is so clearly unavailable to so many,” Elliott says. “People are dying, and that is a status quo no one can defend.” “