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.”


“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.” “

The Sixteen Types…(of personality traits)

…from “Please Understand Me” by Keirsey & Bates

  1.  “Extroverted INtuitive Feeling Judging, known as “ENFJs,” are outstanding leaders of groups and growth groups.  They have the charming characteristic of seeming to take for granted that they will be followed, never doubting that people will want to do what they suggest.  And, more often than not, people do, because this type has unusual charisma.  ENFJs place a high value on cooperation from others and are most willing to cooperate themselves.”
  2. INFJs focus on possibilities, think in terms of values and come easily to decisions.  The small number of this type (1%) is regrettable, since INFJs have an unusually strong drive to contribute to the welfare of others and genuinely enjoy helping their fellow men [or women].  This type has great depth of personality; they are themselves complicated, and can understand and deal with complex issues and people.”
  3. “For ENFPs (, nothing occurs which does not have some significance, and they have an uncanny sense of the motivations of others.  This gives them a talent for seeing life as an exciting drama, pregnant with possibilities for both good and evil.  This [personality] type is found in only about 5% of the general population, but they have great influence because of their extraordinary impact on others.”
  4. “INFPs ( represent a calm, pleasant face to the world and are seen as reticent and even shy.  Although they demonstrate a cool reserve toward others, inside they are anything but distant.  They have a capacity for caring which is not always found in other types.  They care deeply–indeed, passionately– about a few special persons or a cause. One word that captures this type in idealistic.  At times, this characteristic leaves them feeling isolated, especially sin INFPs are found in only 1% of the general population.”
  5. “If one word were used to capture ENTJs style, it would be commandant (  The basic driving force and need of ENTJs is to lead, and from an early age they can be observed taking over groups.  This type is found in approximately 5% of the total population.  They have a strong urge to give structure wherever they hare–to harness people to distant goals.”
  6. “INTJs are the most self-confident of all they types, having “self-power” awareness.  Found in about 1% of the general population, the INTJs live in an introspective reality, focusing on possibilities, using thinking in the form of empirical logic, and preferring that events and people serve some positive use.”  (
  7. ENTPs wish to exercise their ingenuity in the world of people and things.  Found in about five out of every hundred people, ENTPs extravert intuition; thus they deal imaginatively with social relationships as well as physical and mechanical relations.  They are very alert to what is apt to occur next, and always sensitive to possibilities.”  (
  8. INTPs exhibit the greatest precision in thought and language of all the types; they tend to see distinctions and inconsistencies in thought and language instantaneously.  The one work which captures the unique style of INTPs is architect–the architect of ideas and systems as well as the architect of edifices.  This type is found in only 1% of the population and therefore is not encountered as frequently as some of the other types.”  (
  9. ESTJs are very much in touch with the external environment.  They know their community and usually are pillars of strength.  The best adjective to describe ESTJs would be responsible.  The represent about 13% of the general population.”  (
  10. ISTJs are characterized by decisiveness in practical affairs, are the guardians of time-honored institutions, and, if only one adjective could be selected, dependable would best describe this type which represents about 6percen of the general population.”  (
  11. ESFJs, the most sociable of all types, are energized by interactions with people, tending to idealize whatever of whoever they admire.  Harmony is a key to this type, which is represented in about 13 percent of the general population.”  (
  12. “Six out of every one hundred people are ISFJs.  Here the primary desire is to be of service and to minister to individual needs.  ISFJs carry a sense of history, a sense of continuity with past events and relationships.  Traditions and the conservation of resources are valued highly.  …ISFJs believe work is good, play must be earned.”  (
  13. ESTPs are men and women of action.  When someone of this personality is present, things begin to happen.  The lights come on, the music plays, the game begins.  And a game it is for the ESTP, the outstanding entrepreneur, the international diplomat, the conciliator, and the negotiator par excellence.  Approximately 13% of the general population are of this extraverted, sensing, thinking, perceiving type, and if only one adjective could be used to describe ESTPs resourceful would be an apt choice.”  (
  14. ESFPs radiate attractive warmth and optimism.  Smooth, witty, charming, clever, voluble, and open to the environment–this describes ESFPs who, like ESTPs, represent about 13% of the general population.  They are great fun to be with and are the most generous of all the types.  Performer would be the word which best describes an ESFP.”  (
  15. “Just as impulsive as other SPs, the ISTP’s life is artful action–and action is end in itself.  Action for the ISTP is more gratifying if it is born of impulse rather than of purpose.  If the action is in the service of an end or aim, let the aim look out for itself; it cannot be allowed to influence execution.  The act is self-directed, self-leading, containing its own imperatives which are egalitarian an can be fiercely loyal to “brothers,” but they can also be fiercely insubordinate, seeing hierarchy and authority as unnecessary and even superfluous.’  (
  16. Although all SPs (Sensuous Performers) are artisans in their nature, they usually do not pursue their artistry with the same devotion to grace and adornment as the ISFP.  For whatever reason, the ISFP seems more inclined to the “fine arts” than the other SPs; so when an especially gifted composer, painter, or dance shows up, he or she, more frequently than not, possesses the character of the ISFP.  Beethoven, Toscanini, Rembrandt, and Nijinski, as shown by typohistorical research, were clear-cut ISFPs.  But the ISFP temperament is very difficult to observe, even in the great artists, and so ISFP is probably the most misunderstood of all the types.”  (

From A. K. Buckroth, it’s fun to know, it’s fun to learn!  I hope you enjoyed reading this book excerpt.  I enjoyed sharing it with my readers.  Just sayin’….  #buckroth

Artificial Pancreas for T1Ds

JDRF Celebrates Historic Artificial Pancreas Success Bringing Life-changing Benefits to People with Type 1 Diabetes

FDA Approves Medtronic Hybrid Closed Loop System

“On September 28, 2016, the type 1 diabetes (T1D) community reached a major breakthrough with the FDA’s approval of the Medtronic hybrid closed loop system. The system is the first ever approved to automate the dosing of insulin to reduce high blood sugar levels.

“The new Medtronic MiniMed 670G artificial pancreas system is a life-changing breakthrough that allows people with T1D to stay closer to their target blood sugar levels more consistently. JDRF celebrates a decade of dedicated partnership, collaboration, funding and advocacy that have made it possible to reach this landmark goal.

Today’s announcement is a historical achievement for JDRF and the entire T1D community. After years of laying the ground work, this life-changing breakthrough is a true testament to the reason JDRF exists, which is to accelerate ways to cure, prevent and treat this disease,” said Derek Rapp, JDRF President and CEO.

“The artificial pancreas system is designed to use Medtronic’s MiniMed 670G insulin pump, 4th-generation sensors and a control algorithm to automate basal insulin delivery to maximize the time glucose levels are in a healthy range throughout the day and night. The system is fully integrated between the pump and sensor, with no need for a separate smartphone or CGM monitor. The AP system will give many people with T1D new freedom and peace of mind as for the first time, they may be able to sleep through the night without periodically waking up to check and manage their blood glucose levels.

“A study recently published in the Journal of the American Medical Association (JAMA) found that on the 670G system, 124 patients had no episodes of severe hypoglycemia or ketoacidosis over 12,389 patient days.

“Further, the 670G system kept people with T1D within their desired blood sugar range 73.4% of the time, vs. 67.8% without the system. At night, the most dangerous time for blood sugar highs and lows, the difference was even more pronounced, 76.4% in range vs. 67.8% without the system.

“Les Hazelton, who participated in one 670G trial, explains, “Bottom line: I feel better today and since going into this study, than at any point after I was diagnosed — physically, emotionally, confident in how I’m managing my diabetes. You can get emotional about it. On the good days, if there are enough of them, you recall how you feel — that’s how I feel almost every day now. That’s what it has done to help me.”

“JDRF has been pivotal in developing and pursuing its Artificial Pancreas Project since 2006. In less than 10 years, JDRF transformed the AP field, working closely with numerous partners, researchers and companies to overcome the challenges that prevented AP technology from moving forward. Together, JDRF, the Helmsley Charitable Trust, and the National Institutes of Health’s Special Diabetes Program have funded hundreds of millions of dollars in research across the globe to develop and test sophisticated computer algorithms and components needed for the AP systems. JDRF developed a roadmap to create successively advanced versions of the AP, which has been embraced by manufacturers to guide their own R&D programs. JDRF has also worked with the leadership of the Senate and House Diabetes Caucus and other allies in Congress to provide research funding through the Special Diabetes Program and overcome obstacles that could delay delivery of AP systems to people with T1D.

“JDRF funded early artificial pancreas research as part of its hypoglycemia prevention efforts, and in 2006, JDRF launched the Artificial Pancreas Consortium, made up of leading endocrinologists, mathematicians, and engineers at top research institutions in the U.S. and Europe. JDRF and the FDA partnered to proactively address regulatory obstacles, leading to the 2012 FDA guidance for artificial pancreas device systems, which provided a regulatory pathway for system commercialization.

“This month’s huge leap forward would not have been possible without the support of JDRF’s many partners, notably, the Helmsley Charitable Trust, and everyone in the T1D community who has contributed their time, energy and financial support over the last decade.

“But while this is a breakthrough, it is not the end goal. JDRF remains committed to the search for a cure and to ensure people are healthier and have a reduced diabetes management burden until we get there.

“This is a fantastic step forward, but we are not done, JDRF will continue supporting other artificial pancreas advancements and advocating for broad access to this life-changing technology,” said JDRF Chief Mission Officer Aaron J. Kowalski, PhD. “Next generation systems are in the pipeline that could provide even better outcomes with less burden. And our work will not be finished until we cure and prevent T1D.

“More than 10 years of hard work have brought us to this point. In the past decade, JDRF has invested more than $116 million in diverse artificial pancreas research projects, with the goal of aiding the development of multiple, reliable treatment choices for people living with T1D. With continued collaboration and support, imagine what we can accomplish next!”


Why Sugar-Free Foods Have a ‘Laxative Effect’

…by Kristen McNutt, Phd., JD.

“Like fiber, sugar replacers are only slightly digested – or not at all. Therefore, the most low-digestible carbohydrate that is eaten is not absorbed. The body’s normal response to unabsorbed carbohydrates is simply to dilute them by pulling water across the intestine lining into the upper part of the intestine. When low-digestible carbohydrates move into the large intestine, most of that water moves back in the opposite direction. Depending on how much water flowed in and out, stools might be unchanged, soft or loose. This is why low-digestible carbohydrates are sometimes used to relieve constipation.

“Some bacteria that live in the large intestine can “eat” low digestible carbohydrates, and they use this type of carbohydrate for their own growth. After they have eaten, gases and short fatty acids remain. That’s why beans, fiber and other sources of low-digestible carbohydrates may cause an increase of gas. Recent research shows that some of the short fatty acids promote intestinal health. Furthermore, low sugar replacers (isomalt and lactitol) have been found to stimulate the growth of “good” bacteria in the intestine.

“The possibility of loose stools and gas can be reduced by eating only small quanitites of low-digestible carbohydrates. Give your body some time to adjust to digesting these foods.”

#buckroth, “My Diabetic Soul – An Autobiography, ISBN-13: 978-0-9822030-9-5 AND (ebook) – 10: 0-9822030-8; 304 pages references; > $15.95.

JDRF Advocacy

Honored to have been invited to speak at a monthly JDRF (Juvenile Diabetes Research Foundation) meeting, to share old and new information is exquisite, enlightening, encouraging!  Not all attendees were diabetic but attended in order to learn more about the increasing pandemic of T1D (Type One Diabetes).  That in itself is a wonderful acknowledgment.

Diagnosed in 1959 with this disease, my life is constructed, maneuvered and manipulated – by me – around and for my life with diabetes.  Oftentimes embarrassing and misunderstood, the JDRF organization is a welcome addition to positivity.  People know what I’m talking about; people want to learn and appreciate this incurable conundrum.

Having written and published four enlightening books on the subject, sales oftentimes exceed expectations.  I am delighted to share that many books were once again sold at and during this particular occasion.

My Diabetic Soul – An Autobiography is my first personal work of art.  It took me seven years to write it.  The title was specifically chosen due to my actually being able to relate and recognize that I do have a soul, a spirit, when I was six years old, attending the “Clara Barton Birthplace Camp” in North Oxford, Massachusetts, in 1964.  Nine consecutive summers of my childhood were spent there learning, sharing, experiencing, growing – with others – and this disease.  My Diabetic Soul – An Autobiography is a 304 page historically amazing account of life with this disease beginning in 1957; pictures inclusive; ISBN-13:978-0-9822030-9-5 and (e-book) -10: 0-9822030-9-8; $15.95; available at Amazon, CreateSpace, Smashwords, and libraries across the country; #buckroth..

Me & My Money…a child’s story of diabetes is a fictional account of a specific T1D, aged 8.  The story line goes that said child saves her allowance to adopt a puppy which then is also diagnosed with diabetes.  Another learning experience, this raises awareness of diabetes in animals.  Me & My Money…a child’s story of diabetes is a 104-page illustrated chapter book; ISBN-13:978-1490354873 and (e-book) -10: 1490354875; $14.00; easily available at Amazon, CreateSpace, Smashwords, and libraries across the country; #buckroth.

Me & My Money Too…a child’s story with diabetes is the second book in this series, also a fictional account of the same characters.  However, grave, life threatening circumstances are introduced due to one of many diabetes complications along with the introduction of a new character.  Also an illustrated chapter book, the ISBNs are -978-1500316327 and (e-book) -10:1500316326; $16.00; available at the same sources listed above.  View #buckroth for details.

Kisses for Cash Kali’s story…T1D meets T2D Book Three concludes the series, introducing new characters in the life of this T1D and her dog, Money.  One is a Grandmother, another is a dog, Cash!  A healthy lifestyle is encouraged for all members in and out of this family setting; it is another story-book of knowledge, happiness, and learning about daily functions with T1D and T2D (Type Two Diabetes).  Amazing if I may say so myself.  Kisses for Cash Kali’s story…T1D meets T2D Book Three is also an illustrated chapter book with 116 pages; ISBNs-13:978-1535349888 & (e-book) -10:1535349883; $18.00; easily available online and your local library(ies) by request.

These books were a great pleasure to write and illustrate – and re-read!  I know you will enjoy each and every one.

Thank you.

Andrea K. Roth (aka: A. K. Buckroth) #buckroth

“Action Words” to Assist Your Writing(s)!

Words.  As you know, words are used to communicate in a thousand different languages.  The English word list below has been re-typed to assist you in your word search.

As a long-time published author, I prefer to keep my characters active.  To me, action along with colorful descriptions for visualization and the use of all human senses, will engage any reader and  compliment your written – and even spoken works – especially if you’re creating a resume!

With that said, I hope this following alphabetized list will help you in your writing(s):

Accelerated     Adapted       Administered     Analyzed     Approved     Coordinated     Conceived     Conducted       Completed   Conducted         Completed   Controlled    Created            Delegated  Developed       Demonstrated       Directed    Effected       Eliminated   Evaluated         Expanded  Expected         Facilitated     Forwarded         Generated     Investigated   Influenced     Implemented  Instructed        Interpreted    Improved          Initiated        Launched     Led     Lectured   Maintained  Managed         Monitored     Motivated         Operated       Organized    Originated        Participated  Performed       Planned         Presented          Pinpointed     Prepared       Produced         Programmed  Proposed         Processed      Proved              Provided        Recommended    Reduced    Reinforced  Reorganized    Reported       Revamped        Revised          Reused          Scheduled        Set up  Solved             Sorted            Streamlined     Structured      Studied          Supervised       Supported  Surveyed         Taught           Wrote

Sure, there are more!  However, I have found these particular words to be especially helpful when writing a resume.  “A resume should verbally show you are a ‘doer.’  In describing your work experience and extracurricular activities, use words such as these to persuasively present your qualifications and background to prospective employers.”  Anonymous.

I hope you find the same and good luck in all your endeavors!




Diabetes Research “Updates From the Faustman Laboratory at Massachusetts General Hospital”

“Updates , Fall 2016.

“A Note from Dr. Faustman:
“Great things have happened this year! Most importantly, we began enrolling participants in our Phase II trial. This double-blind, randomized, placebo-controlled study in 150 participants will continue to investigate the ability of the BCG vaccine to reverse type 1 diabetes. Supported entirely by philanthropy, it is a clinical trial by the people, for the people.  With this trial, I hope that we will find a way to stop the body from destroying the insulin-producing cells of the pancreas and help the body restore blood sugars to normal levels.
“A decade ago, that may have seemed unachievable, but I believe it is a goal that we are coming closer to every day.  We are very proud to be doing this work and thank all who have helped us get here. We are touched by all of the individuals and families we hear from and see who are affected by type 1 diabetes, from the patients that donate blood for our research
to those who send in messages of support. The dedication and energy we are giving to this project is matched—if not exceeded—by the dedication and energy of our supporters.  Thank you all!
“On a more sober note, we are very deeply saddened each time we learn about a life lost to type 1 diabetes complications. As you read further, you will see that this is something we touch upon in one of the updates in this newsletter. The loss of life caused by this disease makes our research goals very real to us and very clear – we must find a way to stop type 1 diabetes.  I know that we all share this hope, and the Faustman Lab will continue to work towards this goal.
“Please contact us with any questions at
Thank you again!
Denise L. Faustman, MD, PhD
“Long-Term Follow Up of the Phase I Trial Continues We continue to follow the progress of the patients who participated in the Phase I BCG study. All patients who were randomized to receive placebo during the blinded portion of the Phase I study have now received two doses of the BCG vaccine, just as the patients randomized to BCG did. We expect to publish data on our long-term follow up of all of the Phase I patients in 2017.
“Phase II Trial Updates…We now have over $20 million raised for the Phase II clinical trial.  The Phase II trial is a double-blind, randomized, placebo controlled study that will investigate the ability of the BCG vaccine to help those living with type 1 diabetes permanently lower their blood sugars. The primary endpoint of the trial will be to see if BCG helps to lower HbA1c.
 ‘To date, we have enrolled over 130 of the 150 candidates that we need for the trial, and have given at least one dose of the BCG vaccine or placebo to over 100 participants. We will follow participants over a five-year period. We will keep everyone updated with trial updates as they are available.
“$20 million raised BCG Trials in Multiple Sclerosis…Moving Forward in Italy…Our colleagues in Italy are moving forward with a Phase III trial testing BCG in patients with multiple sclerosis (MS). Led by Dr. Giovani Ristori at Sapienza University in Rome and supported by the Multiple Sclerosis Society of Europe, the trials will look at the clinical effect of BCG vaccinations in patients with early signs of MS. This is a follow up to their Phase II study, which showed that even a single dose of BCG stopped multiple sclerosis progression in over half of patients compared to placebo.
Faustman Immunobiology Lab Research Identifies & Corrects Regulatory T Cell (Treg) Defects in
Type 1 Diabetes. Regulatory T cells or “Tregs” are a type of white blood cell that helps regulate the immune system, and they normally should prevent autoimmune conditions like type 1 diabetes. In our latest type 1 diabetes research paper, we identified a defect in the Tregs of people with type 1 diabetes. Using human blood samples (thanks to everyone who donates blood for our research), we showed how tumor necrosis factor (TNF) is one way to correct this Treg defect.  Specifically, TNF treatment of type 1 diabetic Treg cells “awakens” the Tregs so that they become potent and functional again, fighting the cells that cause autoimmunity. Part of what we hope to do in our trials with the BCG vaccine (which is a known way to stimulate the body to produce
TNF) is to awaken these cells to put up a fight.  Our paper was published online in Nature Clinical & Translational Immunology in January this year.
“Kiss the Sky to Conquer Diabetes: A Tribute to Murphy (Murph) Roberts.  We featured the amazing efforts of Kiss the Sky to Conquer Diabetes (KTS) in our newsletter last year. For those who don’t know, KTS is a mountain climbing group led by Rick Noble. They joined the effort to help raise awareness for and finance our human clinical trials in 2004, and they have since taken
on some incredible climbing challenges in support of these goals.  This summer, KTS took on the
Six-Pack of Peaks Challenge, which Rick described as “6 peaks, 82 miles, over 27,000’ of vertical gain and one epic challenge to conquer diabetes!”  Right before setting out on the fifth and biggest climb of the challenge, the KTS team sadly learned of the passing of Murphy (Murph) Roberts, the brother of a friend of Rick’s daughter, Sarah.
“While hiking in Utah, Murph experienced a seizure related to his type 1 diabetes. The seizure caused a fall that resulted in a series of complications, leading to his death.  Murph, a member of the class of 2017 at Middlebury College in Vermont, is remembered as a great student and person, and an avid adventurer. He was also passionate about finding a cure for type 1 diabetes. As a tribute to Murph and with the blessing and support of Murph’s family, the KTS team has renewed their pledge to “keep climbing until we conquer type 1 diabetes.”
“Dr. Faustman and Charlotte, a young supporter whose very successful rollerskating fundraiser helped benefit the Faustman Lab’s research.”

Insects of Diabetes

The Insects of Diabetes – A Different Take

Having to deal with insects is unpleasant. But it often has to be done, right?  Careers have been exhilarated through the care and most probably the removal of bugs: household spiders, fleas, flies, ants, slugs, snails, beetles, mosquitoes, etc.  Add more for emphasis if you would like.  You get the idea.

Diabetes has its own specific insects – of a sort. I call them “EIDS,” an acronym for Exercise, Insulin, Diet, and Stress.  Not too many people are in favor of attention toward EIDS, but these have to be attended.

Entomologists study such critters, bugs, that not only occupy this planet of ours, but are necessary in the chain of life. Entomology is the scientific field of study that specifically addresses all species of insects.  “At some 1.3 million described species, insects account for more than two-thirds of all known organisms, date back some 400 million years, and have many kinds of interactions with humans and other forms of life on earth.” (

Using entomology as an analogy to diabetology, this is the study of diabetes. It has become a field of expertise, often referred to “endocrinology” pertaining to the practice and concentrated care in diabetes patients.  With diabetes having become a pandemic, 400,000,000 people are singularly affected and effected.  This does not include the numbers of diabetes caregivers (e.g., parents, siblings, spouses, extended family members, medical personnel, friends, etc.) that witness the daily actions or inactions of their diabetic counterparts.  (

To my astonishment, author Gail B. Stewart wrote that diabetes dates back to “1500 B. C. in the Ebers Papyrus, an Egyptian compilation of medical works containing a number of remedies for passing too much urine.” On to “400 B. C., Susruta, a physician in India, recorded diabetes symptoms and classified types of diabetes.”  (Stewart, Gail B. Diabetes. © 1999.) Continuing into A. D. 10, 2nd century A. D., onto 1869, and 1921, Ms. Stewart further explains the history of diabetes.  Not unlike our earthly insect participants, its history has been unstoppable.

Exercise – difficult to accomplish on a daily basis no matter your age.  Motivation, encouragement and self-discipline are ingredients to control this particular “insect.”  No, it’s unnecessary to join a gym and make yourself promises that you know you won’t keep.  Debt enhancement may be your only self-promise!  Just start moving!  Start small.  Move slowly.  Begin by walking the length of your driveway and back.  There’s no competition.  No one is watching you.  Do it for yourself.  Increase your walking space every day.  Every day is important.  Pick a time and go for it!

Insulin – don’t forget your insulin!  Never ever forget your insulin!  No matter if you inject it daily, wear an insulin pump, or pop a pill to help manage this disease, your medications are vital!  Medicine is medicine and invented for a purpose – to help you live!  It is available for you.  It was invented for you.  Take advantage of your special-ness.

Diet – Ugh.  This ‘insect’ has to be balanced as in acquainting yourself with food groups, portion sizes, times of eating, blah, blah, blah.  Everyone in the world is acquainted with this topic!  Caloric intake, carb or no carb, low protein or vegetarian, a diet is a diet is a diet.  It’s the strictures of diets along with the act of dieting that need your attention.  Repeated research has shown that a healthy diet is absolutely necessary – and not just for a diabetic!  Medical professionals are in abundance to guide you with this factor.  Too many books have been written on this factor!  Why?  Because it is important!  Think about it.  What you ingest is part of your daily self-care.

Stress – I think this is the worst insect to even try and avoid!  If it crosses your path – and it will, be sure of it – and it approaches you unawares, be still.  Just be still.  Breathe, listen, blink breathe.  Many things are out of your control – accidents, management blame, financial upheavals, etc. – except for you, your self.  It is how you control your stress level that will determine your self-health.   Many choices are available – for you – in which to indulge and keep your inner peace.  That is a healthy state of mind, a healthy state of being.  You want to be healthy.  Healthy is happy.  Happy is a good thing.

Each of these ‘diabetes insects’ effects the other. As in the circle of life or knowing that history repeats itself, diabetics do what needs to be done in order to function on a daily basis.  This sounds simple, but it is not.

Hope for a Diabetes Cure – yes, again….

Important: “Breakthrough: The Case of Murder in the Pancreas”

No one’s sure why renegade members of the immune squad snuff out workers in the body’s insulin factory. Can investigators like Thomas Delong solve the mystery—and stop the attack that leads to type 1 diabetes?

By Jon Holten , , ,

Click here to download the print version of this article.


By the time Thomas Delong, PhD, arrived in Denver, Colorado, the investigation into the immune attack on insulin-making beta cells that leads to type 1 diabetes had been running into brick walls for 18 long years. The team needed a fresh perspective and a different set of skills, so they imported a specialist.

“He was quite confident that he was going to crack this in six months,” says lead investigator Kathryn Haskins, PhD, a professor of immunology and microbiology at the University of Colorado School of Medicine.

Delong was right about being able to solve the case. He was just off by a decade.

Chapter 1

The hunt began in the mid-1970s, after scientists realized that type 1 diabetes is an autoimmune disorder—the result of the immune system launching a misguided attack within the pancreas and wiping out the beta cells that produce insulin.

The first big break came in 1988, courtesy of a young hotshot named Kathryn Haskins. She discovered that a T cell, one of the white blood cells responsible for protecting the body against intruders, pulled the trigger in the immune response that causes type 1 diabetes in mice. Within a year, she made a positive match on several more disease-causing T cells involved in the assault on the beta cells.

Haskins solved the whodunit. But she remained unclear about the exact motive and the initial victims. “From then on, I wanted to know what in those beta cells is the target,” she says. That remained a mystery well into the next millennium.

Chapter 2

In the spring of 2006, Haskins received a letter from Germany. The writer? Thomas Delong. He was completing a doctorate degree in chemistry and biochemistry at the University of Erlangen–Nuremberg, and he wanted a job. Delong had no background in immunology, but Haskins invited him to Denver to interview.

“It was fortuitous timing,” Haskins says. “We were trying to identify the chemical makeup of the material that triggers the autoimmune response, and he was a perfect fit for what I wanted.” Delong joined Haskins’s lab as a postdoctoral fellow in July 2006.

“I was excited. I knew this could be big,” says Delong, who brought along a personal agenda. He had developed type 1 diabetes at age 12. A physician later told him about genes associated with type 1 diabetes, which got him thinking: “Why did I get this disease? What caused it? It was important to me to figure out.” Set on a career in diabetes research, he took the advice of a friend’s father and chose to study chemistry. After 10 years of college, he crossed an ocean to work with Haskins.

“Handling T cells is very difficult, and she’s a magician,” Delong says of Haskins. “T cells are there to help us. They fight off viruses and bacteria. The problem was [that] she didn’t know why they attack the body’s own beta cells.”

Chapter 3

Delong soon came to think of diabetes-causing T cells as terrorists. His task was to find the initial victim in the terror spree—an autoantigen, a substance within the body that T cells mistakenly target. He began by analyzing the content of beta cells, home to a multitude of proteins, each one a potential innocent target of the T-cell attack.

“Beta cells contain tens of thousands of different molecules,” Delong says. “I broke them open and tried to isolate and purify the proteins. It was detective work.”

He filtered out small, insignificant molecules and separated the rest into multiple batches. When lab-grown copies (clones) of diabetes-causing T cells from mice surprisingly had only a mild response to each batch, Delong chose to focus on the batch that prompted the biggest effect.

He used a high-tech instrument to identify known proteins in the batch. The T-cell clones didn’t recognize one protein in particular as part of a healthy body. Delong figured this was a likely source of the autoantigen, but he didn’t know which part—or why it looks threatening to the immune system.

Since the protein in question naturally spins off a compound called WE14 in other glands, Delong tested WE14 with T-cell clones. Three of the clones fired weakly at the WE14, confirming in 2010—four years after he started—that WE14 is a target for certain types of T cells.

But something gnawed at Delong: If WE14 truly is the T-cell target, why was the immune response to this compound so weak in the lab?

Chapter 4

Frustration was building. Nothing Delong tried in the lab with his target antigens could replicate the way, in the laboratory, reactive T-cell clones declare full-on war on the unfiltered content of beta cells. “That was discouraging,” Delong says.

“We knew that proteins can be modified in the cells, and it could be any one of many possible modifications” that leads to an immune system response, he says. The challenge of determining the correct modification? “Immense,” says Delong.

The body processes proteins through chemical reactions that produce other compounds. For example, human beta cells modify two compounds to bind to each other to form active insulin, which regulates metabolism and escorts glucose to the body’s cells.

“We tried many things, and most didn’t work,” Delong says.

Haskins wasn’t surprised. “We took a lot of wrong paths, which is the way that science goes,” she says.

Chapter 5

While subjecting the protein that contains WE14 to assorted conditions, Delong increased the acidity of the solution—like adding a squirt of lemon juice to a glass of water—and the compound disappeared. That unstable behavior reminded the biochemist of a common group of compounds known as aldehydes, so he mixed the content of beta cells with a chemical that reacts to aldehydes. He found no sign of aldehydes. Instead, the chemical was binding to insulin fragments.

This was an important clue, and Delong made an intuitive leap in the investigation: Perhaps the T cells’ target was a hybrid—half insulin fragment and half a fragment of something else. He needed to identify, beyond a doubt, the unnamed substance.

Chapter 6

If proteins were food items, a mass spectrometer could identify an egg, some milk, a little flour, and so on. But when an egg and milk get together to produce a soufflé, the spectrometer draws a blank. “Mass spectrometry can tell me what proteins are in there, but only if the protein is known … if it’s in the database,” says Delong.

To aid identification, Delong broke down the different proteins into smaller fragments, known as peptides, and then chemically fused fragments of insulin to other peptide fragments, such as WE14, forming entirely new peptides. He called these novel peptides hybrid insulin peptides (HIPs).

“When two different sets of T-cell clones responded strongly to several of these HIPs, our confidence went up exponentially,” he says. “Then we started to look for and devise methods to identify them. It took another half year to do that.”

Chapter 7

Having identified HIPs that were recognized by the T-cell clones, Delong generated a mass spectrometry database containing the unique signature for each HIP. Next, he began to look for the HIPs in the content of beta cells, using mass spectrometry.

This time, the spectrometer identified several HIPs. “That was the eureka moment. Hybrid peptides occur mostly in plants,” Delong says. “[Hybrid insulin peptides] were not known to exist. Nobody had ever seen them before. No one knew they could get fused to each other.”

When exposed to the hybrids, five types of T-cell clones from mice reacted strongly. T-cell clones from the pancreases of two organ donors with type 1 diabetes also had a potent immune response to various HIPs, suggesting the hybrids play a central role as targets of the autoimmune attack that launches type 1 in humans. Eureka!

“This provides such a plausible explanation of how the body gets tricked,” Delong says. The peptides occur naturally in beta cells, but T cells apparently don’t recognize the hybrids as part of the body and treat them as a foreign threat.

Chapter 8

After an article they wrote on their research appeared in the journal Science in February, Delong and Haskins received praised for this discovery.

“Dr. Delong’s novel and exciting work identifying pathogenic hybrid insulin peptides as a trigger of this immune attack sheds pivotal new light on a possible trigger of diabetes and has the potential to enable us to develop novel strategies to tackle it,” says Desmond Schatz, MD, medical director of the University of Florida Diabetes Institute and president of Medicine & Science for the American Diabetes Association.

Since joining Haskins’s lab, Delong has logged other milestones as well. He became an assistant professor in 2012 and a U.S. citizen in 2015. He and Haskins applied for a patent on their library of hybrid insulin peptides, now approaching 8,000, to aid in diagnosing and treating type 1 diabetes. Along the way, Delong started using a continuous glucose monitor to manage his diabetes. He also received a Pathway Accelerator Award, major research funding from the American Diabetes Association (see “Funding Fuels Research,” below).


The discovery that hybrid insulin peptides may play a major role in the development of type 1 diabetes has already inspired new directions for researchers, with clues on how to diagnose, treat, prevent, and cure type 1 diabetes.

“When you make a discovery, a whole new area opens up,” says Haskins, “and our lab is working onall of those questions.”

Learning more about the mechanism used by beta cells to produce hybrid insulin peptides could lead to methods of preventing the autoimmune attack by shutting off either HIP production or the signal telling T cells that HIPs are antigens.

“Our hope is that we can re-educate the immune system,” Delong says. “Maybe we can use hybrid peptides as drugs to induce tolerance by reactive T cells.” The drug would teach the T cells to accept the HIPs—similar to training a guard dog not to go after the mailman.

“We might even be able to reverse diabetes, if you put stem cell–derived beta cells back in the body of a patient [to restore insulin production]. The immune system has memory, so you would need to shield the stem cell–derived beta cells. If you can identify the handful of T cells that attack the hybrid peptides, you shut them down before you put stem cells in the body.”

The researchers also speculate that hybrid peptides could be the target antigens for other autoimmune disorders, such as multiple sclerosis and rheumatoid arthritis. Delong notes that more than 15 percent of people with type 1 diabetes develop other autoimmune diseases. This important research may open the doors to cures beyond diabetes.

Delong sees great potential but cautions that it will take years for their research to result in new care regimens. But when that happens, the presence of HIPs may be used to diagnose type 1 diabetes or identify people at risk of developing it.

“I have always hoped that a cure would happen in my lifetime,” says Delong. “The way to stop diabetes is to figure out ways to prevent it. I think that’s realistic, but these things take time.”

Funding Fuels Research

Thomas Delong, PhD, may be an assistant professor at the University of Colorado School of Medicine, but he doesn’t buy groceries, pay the mortgage, or make a breakthrough diabetes discovery without research grants.

Expenses associated with running his lab, including his salary, are paid for by grants he is awarded by funding agencies, such as the National Institutes of Health and the American Diabetes Association. “You need resources to do your research,” Delong says. “You need technicians who can help you.” Ten other people work on this research.

Delong received a Pathway Accelerator Award and $1.625 million from the Association in January 2015, 13 months before his major research on hybrid insulin peptides was published. The funding has allowed him to focus on research—and not on writing requests for more grant money.

To speed research advances, the Pathway to Stop Diabetes initiative aims to attract and sustain—with a generous five to seven years of financial support—the next generation of diabetes researchers. Delong’s discovery “is validation that we are supporting the right people in the right environment, asking important questions, and uncovering some of the mysteries surrounding diabetes,” says Allison McElvaine, PhD, the Association’s director of Research Communications.

You Can Help

In 2015, the American Diabetes Association received nearly 730 promising diabetes research proposals. The Association was able to fund 84 of those. Too many potential breakthroughs go unfunded—you can help: visit

Interested in more information about healthy living with diabetes? Click here to subscribe to Diabetes Forecast magazine.

Get Free Health Tips

Register for free recipes, news you can use, and simple health tips – delivered right to your inbox.

Thank you for signing up to receive the Diabetes Forecast eNewsletter. We’ll check in with you twice each month to share timely tips and friendly health reminders.
-the Editors

Get to Know

While she’s still spinning music, DJ Spinderella (aka Deidra Roper) is no longer spinning her wheels when it comes to getting the right information to help her family members who have diabetes. Read more >

Stay Healthy All Year Long for Only $1.00 an Issue

Diabetes Forecast® 12 issues for $12.00 plus more…exclusive member benefits and discounts.

Get Deal!

“Kisses for Cash” Kali’s Story T1D meets T2D

Picture1This third chapter book in the series introduces new characters in Kali’s life.  She is now eleven and a half years old, having lived with diabetes since she was two years old, and continues to care for her diabetic dog, Money.

Her Grandmother, recently diagnosed with T2D (Type Two Diabetes) comes to live with the family; Grandma decides to adopt a dog of her own in order to get exercise to help her control her disease as she is unable to handle Money’s girth; a new school friend, Tavius, is introduced while her bff (best friend forever), Wayne, pursues other interests.

Mishaps continue as well as young adventures that lead to learning experiences for all young diabetic boys and girls.

Suitable for all ages, this illustrated chapter book, consisting of 121 pages, is an easy acquaintance to learning about T1D.  I am sure you will enjoy it along with the two other books in this series as they were absolutely delightful to write.  Please let me know your thoughts!  Thank you…A. K. Buckroth (#buckroth,

Available at, Goodreads, Smashwords, and local libraries, and book stores.  Happy reading!

Here’s an excerpt beginning with Chapter 9….

Sitting at the kitchen table, staring at the brown cardboard box that was delivered a couple hours ago, I knew what awaited me inside of it—a new insulin pump. Mixed emotions surrounded me.  Sure, I was glad it arrived.  After all, it helps me stay alive, stay well.  I’m just a little nervous having to put it all together correctly.  It’s been more than two years since Nurse Nina first taught my parents and me about the insulin pump, and when I first began using one.  Slowly, I recalled all the details.

Mom and Grandma continued to tour the house, getting Grandma settled a little bit. While they were busy doing that, I got busy opening the eagerly awaiting box. I can do this.  For one, I’d be able to stop taking four injections every day.  Four and a half days of doing that was enough as far as I was concerned.  Second, the pump would give my body get the constant infusion of insulin it needs, an automatic squirt every three minutes.  I don’t necessarily want to do this. I have to!

It was really nice walking around without it. Different.  I felt free, really, not having it clipped to my pants, not having to worry about banging it, dropping it, or getting the tubing stuck on a doorknob or pants zipper or something.  But the alternative was bothersome—pausing to get my insulin pack, filling up a syringe, sticking it

somewhere in my body, being careful to remember not to use the same area twice, etc, etc. So many details to remember and plan.  Plan, plan, plan.  That’s a big—no, huge—part of my every day!  Oh well.

Opening the box with a pair of scissors while it rested on the kitchen table, I sat, getting real serious about this process. I concentrated.  There was a little white cardboard box inside the bigger brown one surrounded by lots of plastic bubble wrap and more clear packing tape.  Protection.  Geez, what I call a ‘paper trail.’  It takes a while to get through all this paper.  I’ve often wondered if this company knows about recycling.  Geesh.  Once opened, the new pump gleamed in all it shiny newness.  Clear in color, its five command and use buttons were displayed in black bold letters on the front, under the LCD screen.  I could see right through it.  Such a little thing, it weighs only 3.5 ounces, so I was told.  In fact, when some people have seen it attached to my clothing, they’ll ask me “why do you wear a pager?” because it looks like a pager.  I answer “It’s not a pager.  It’s an insulin pump.”  Then I get all kinds of reactions: either they shut up right away, seemingly shocked, not knowing anything about such a device.  Or, they get real interested, asking questions of interest with a short conversation.

Set aside are supplies that I already had: an alcohol swab, a vial of Apidra insulin, a 6 millimeter 23 inch infusion set, a reservoir, a AAA battery, and a dime. As I was taught to do, I let the Apidra insulin vial sit out for an hour to become room temperature-ized.  I have always used a dime to open the slim battery case.  Sure, there’s a ‘plastic unscrew battery thingy,’ but I didn’t know where it was.  The dime fit just fine to unscrew the top of the battery case area and insert a new battery.  With that done the pump’s LCD (Liquid Crystal Display) screen lit up and blinked on as if happily awakened.

When I pressed the familiar “ACT button,” it displayed various commands, choices of what I wanted or needed to do with it. Pressing the down arrow button, I chose “Time and Date” and pressed the month, the day, and the year.  Onto the time of day, I pressed the up and down arrow buttons a few times.  The time of day is important for the pump to squirt—release—the hourly programmed dosage of insulin.  For instance, between midnight and 4am, it was programmed at the time to give me .4 (four tenths) of a unit as opposed to other day time hours when it gives me .6 (six tenths of a unit).

Next, I gently peeled open a small square reservoir package. This light-weight object arrived in a carton of ten.  They looked like small syringes, each with a light blue needle head attached.  These hold the insulin inside my pump.  Pressing its clear plastic lever back and forth a few times made sure it slid easily in order to move inside the pump.  Just a precaution, I guess.  It’d be in the pump for about seven days.  I made sure it would slide easily to disperse insulin for all that time.

I heard my parents and grandmother enter the kitchen. They were watching me.  All was quiet.  I smiled.

“You guys don’t hafta be so quiet,” I said.

“Well, you look like you’re concentrating so hard, so serious. We didn’t want to bother you,” my mother remarked.

“Can I sit and watch you, Kali? I’ve never seen such a thing,” said Grandma.

“Sure, sure,” I told her. “It’s almost ready to insert into my leg.”

Grandma looked like—well I don’t know how to describe it. She looked like she was going to cry with her blue eyes wide open and her eyebrows crinkling on top of her forehead.  With the attached needle head, I pressed it on to the insulin vial, inserted air into the vial, then withdrew it slowly, pulling on the syringe stick lever to fill it up with insulin.  The maximum units the reservoir tube holds is 180.  If there’s a problem, the pump will beeeep non-stop until I give it the attention it needs.

For instance, Dr. Ansari, my endocrinologist, calculated that a warning, a loud beep, would sound when there are 20 units of insulin left. If I were to hear it, I would have to look at the LCD screen to see what the pump is telling me first of all.  Then I would shut it off by pressing the “ESC”—Escape— button.  Ha, I’d like to press a button to escape sometimes, haha.  A couple times it beeped non-stop with the screen blinking in upper case letters OCCLUSION! OCCLUSION!  OCCLUSION!  Just like that.  Non-stop.  That sound had woken me up a few times.  It’s an alarm.  Not good.  I don’t like insulin pump alarms.  This means that the tubing from the pump to my body is blocked and needs to be changed.  That’s the only way to fix the situation, to make the beeping stop.  Doing that at 3:00 in the morning is horrible.  It was Money that actually woke me up one time, pushing me with his nose.  The pump’s alarm sound woke him first.

There were other times, too. I’ve been embarrassed when in the mall or in school or out somewhere.  I had to immediately stop what I was doing and give my attention to the screaming pump that was clipped to my waistband.  I hate that!  People around me don’t know what the heck is going on and look at me like I’m weird.  Ugh.  They just don’t know.  Scurrying quickly to the nearest restroom, I’ve had to partially undress, shut off the thing, scrounge in my pack for an extra infusion set or whatever is needed, and change it, fix it.  Lots of crazy things have happened while wearing and carrying this thing when I least expected them too.  And lots of times I have been unprepared.

Like one time, I was in church with my folks and the pump started beeping—non-stop! OMG!  Talk about embarrassing!  I couldn’t shut it off.  My mother couldn’t shut it off.  EVERYBODY could hear it, I swear. We all scooted out of the pew to the restroom.  FINALLY quieting it down, I saw it needed a battery.  None of us had a battery.  So, we left service, had to go home, and get a stupid battery.  Ugh.  Sure, there’s a picture of a battery on the LCD screen – if I looked at it, I would’ve known that it was low! But I didn’t.  Ugh.  My fault for sure.  I know better now, another part of planning and preparing.

Next, on to peeling open an infusion set, I first calibrated the pump machine, setting my hourly, 24/7 (24 hours a day for 7 days), basal rate. I call that my “squirt rate.”

My mother pretended not to watch me and remained quiet. She kept walking back and forth from the stove, to the sink, to the table, occasionally breathing on top of my head.   I wished she would go into the other room!

Finally, the pump was all suited up. Oops, I almost forgot to attach the clip.  With that done, I re-thought hard about where the infusion set would go in and on my body.  My choices are certain skin areas on either side of my lower belly, two inches away from my belly button; the top, inside, or back of each thigh; either hip, as far as I could reach, or either buttock, as far as I could reach, and the lower, fatty areas of my upper arms.

With Grandma watching me too, I decided to put the infusion set it in my upper thigh. That’s the best place to show—demonstrate to her or anyone—how this is done without having to undress.  She got real quiet as I did this.  Tearing open a small square envelope with one alcohol swab in it, I wiped the area, making sure it was clean, sterile, free of germs.  Next, I opened the sterile packaging that holds the infusion set, removed the sticky paper on the round adhesive tape area that holds it to my skin, then I removed the bright blue plastic covering on top of the metal needle.

The insertion of the needle is like an intravenous needle, but the metal part doesn’t stay in my skin. It’s also called “subcu – subcu – subcutane – sub-cu-tan-e-ous,” phew, which means it doesn’t go into a vein.  I held my breath, gritted my teeth, and quickly push the needle into my thigh skin.  Phew.  Deep breath.  I don’t like doing this.  It hurts worse in some spots than others sometimes, not always.  I don’t know why.  Grandma looked like she was going to cry, especially when I pulled the needle out and rested it on the table to be discarded.  She stared at it, gasped, and stayed real quiet.

I often get little black and blues from putting the needle in or taking it out. That’s the way it is.   Like the little black and blues on my finger tips from testing my blood, I know why those happen – from doing the same fingers spots over and over.

Once the ugly and scary looking metal needle head is pulled out, a plastic infusion set stays in my skin attached to a flat, clear plastic head about the size of a quarter. That rests on top of my skin.  The tiny plastic needle-like tube inside my skin is about a quarter of an inch long.  Once that is done, I cover the head of it with a thin, clear, 2 x 3 inch sticky paper to keep it in place, to protect it and myself so it won’t come out.  It’s thinner than a bandage, comparable to a layer of human skin.  All this has to be done the day after tomorrow, again, but in a different body spot.

“Okay, Mom. I’m all hitched up.”

“Good, sweetie. Did you set your hourly basal rate the same way? “

“Yep. See?”  I showed her.  She gently took the pump in hand to review everything I just did.  As the tubing is 23 inches long, gently is a key word.  Neither one of us could move too far.

“Looks good. Good job.  Now test your blood, count dinner carbs, and take care of Money.  I love you, Kali.  Supper will be ready in about 20 minutes.”  Mom squeezed me tight, as always.

“Kali, you are so brave,” my grandmother told me. She had a tear in the outside corner of her eyes like they were going to pool up and roll down her cheeks.  Wiping her eyes with her thumbs, she stated, “I’m glad I was able to see you do this.  Now I know more about this pump and how you have to wear it and what you have to do.  If it’s all right with you, I’d like to see you do it again when you’re ready.  Watching you will teach me.”

“Okay, Grandma. I’ll let you know.  I have to do it again in three days.  Every three, or sometimes four days, I refill it and do this all over again, put it in a different body spot.  Rotate.”   I remembered that my last shot with Nurse Mickey was in my “Izzy arm,” the left one.  I call it that due to what happened last year when “Izzy the Infuriator” slammed me into the lockers.  Three days from now, I’ll put a new one in my upper left thigh or maybe my upper left hip.  We’ll see.  I go through the same process all over again, the same decisions, the same planning.

Sometimes I forget to tell my parents when my supplies get low. A couple times the pump company had to send them to me by overnight mail.  I’m supposed to notify them – my parents, really – when I have ten infusion sets and ten reservoirs left.  Then either my Mom or my Dad will call the company and place an order.  Usually it’s Mom.

A lot of my decisions of where to put the infusion set depend on the clothes I wear. I prefer pockets in all my clothes, front or back.  Skirts my size are more difficult to find with side pockets.  My once favorite faded blue jeans skirt had front and back pockets. The front pockets were big enough to hold the pump comfortably and securely.

Dresses? Forget it.  I’ve never had a dress with a pocket on it.  They just don’t exist.  When I do have to wear a dress, like the special one Grandma got me for Christmas, I clipped the pump underneath onto the waistband of my underwear.  But doing this makes it more difficult for me to access the pump when I need it.  And after a while, my underwear waist bands unravel and get worn out from the pump clip.  Oh well.  Once diabetes is cured, I won’t have to do this anymore.  I think about a cure for this disease every time I go through this.  I’d like to be cured—along with the rest of the world!  Ah well.  As my mother has often told me, “hope springs eternal.”

I don’t cry any more when I do this. Actually, either of my parents used to do it for me.  That was more than two years ago, when I first started using an insulin pump.  I used to cry.  But I know how to do this by myself and I understand why.  I still don’t like it.  Am I supposed to like it?  Nah.  I use it to stay alive.

Phew. That’s overonce again.


All the insulin pump preparations with supply set-up, putting in a new battery, re-setting the hourly bolus rates, resetting the timer and date, filling the reservoir with insulin, making sure there are no air bubbles, letting it re-wind, putting it in the pump, attaching the infusion set tubing to my body, replacing the clip, and finally putting it in my body took me about twenty minutes.  A long twenty minutes!


Re-setting this machine is what took me so long. Otherwise I would’ve had it in my body after only ten minutes.  What takes the longest is letting the insulin sit out to get  room temperature-ized.  That takes about 20 minutes.  My Mom did that while I was at Wayne’s.  She’s a great planner too.

Back on schedule, I feed Money —before I eat.

Chores? Like sweeping the floor?  Not yet.  I planned to do that after supper, when I clear the dishes and put them in the dishwasher.

I spent my after school “chore time” at Wayne’s house. That’s okay.  It was worth it.  I felt good about that but not a hundred percent good.  No homework to do seeing as it was almost the last day of school.  Heck, there’s lots of other stuff I could do!

“Kali, when is your last day of school?” Grandma asked.

“June 4th,” I declared with glee.

“And then you’ll be a fifth grader? Is that right?”

“A sixth grader, Grandma, I’m going into the sixth grade. “And summer camp starts July 5th,” I told her.  I couldn’t wait!  “Now that you’re here, Grandma, you’ll be able to come with us to drop me off and see the camp.  It’s really nice.  I like it—a lot!  Especially the big field where we play volley ball.  And the pond is right behind there with a dock and the canoes and row boats,” I excitedly explained.  “The cabins are in a half-circle around the pond with the fire pit at the far end.  I’ll show you.  We can walk around the who-oo-le place!  I can’t wait to see some of my friends, too.  Maxine, Lisa, Judy, Cathy.  Especially Cathy.  She wasn’t on a pump last time.  I tried to talk her into it.  Maybe she has one now.  I don’t know.”