Be Prepared: Surviving Natural Disasters with Diabetes

This content originally appeared on diaTribe. Republished with permission.

By: Amber Clour

Amber Clour was born and raised in Norman, Oklahoma. Twenty-one days after her eighth birthday, she was rushed to Children’s Hospital where she spent two weeks learning how to live her new life with type 1 diabetes. In 2015 she co-founded DiabetesDailyGrind.com and the Real Life Diabetes Podcast.

It may not be possible to anticipate every emergency, but for those with diabetes, it’s especially important to prepare for the unexpected. Hear how people with diabetes survived natural disasters, what they learned about planning ahead, and the advice they have for others.

Susan Hoagland, 70, who lives with type 1 diabetes, worked up until the day before Hurricane Katrina hit New Orleans in August 2005. Then like most people in the path of the hurricane, she headed out of town.

“In my mind, I was only heading to Austin [Texas] in anticipation of Katrina for a long weekend and didn’t pack all of my medications and supplies,” she said. Hoagland didn’t have a prepared container of supplies, including medications, food, hypo treatments, glucose monitoring devices packed and ready to go – something she would later regret.

***

Dealing with diabetes management every day takes considerable effort, and even when we’re on our A-game, things can at times get overlooked. It’s important to anticipate what might be needed in the case of a natural disaster, so that the fight or flight response due to an adrenaline rush doesn’t get the better or you and your health.

Growing up in Tornado Alley (Oklahoma) means long ago I developed a game plan for emergencies, so that an impending tornado, and the need to leave my home, would not imperil my diabetes management.

I wanted to reach out to others who have been in this situation, and to Carol Atkinson, an expert at the Diabetes Disaster Response Coalition, to hear more about surviving natural disasters and the tips and tricks they have found helpful. The bottom line is that everyone should be prepared to leave their home in case of an emergency with everything they need to make it through the crisis. Being prepared and having everything ready to grab and go means when a natural disaster strikes, you don’t have to face making layers of decisions, delay your departure, or augment your flight or fight response.

To be prepared, think about all the supplies you will need:

  • Medications: Put a supply of all your medications in separate containers to last a week or longer, and think about how to keep insulin at the right temperature, such as an instant cool pack.
  • Injection supplies: syringes, your insulin pens, extra pump supplies
  • Food, a source of glucose, water to stay hydrated: a supply of glucose tabs works really well, some bottles of water, and some food that doesn’t spoil
  • Monitoring supplies – like my CGM, a backup blood glucose meter and strips, and a way to measure ketones
  • Copies of prescriptions
  • An emergency contact list contact in case of an emergency
  • Cellphone charger
  • Batteries, an ID, and cash

***

The morning before Hurricane Katrina hit the banks of New Orleans, Hoagland was in a panic ­– not a good mindset when it comes to making sure she would have everything she would need to survive the catastrophic storm. As she gathered her things in a hurry, she realized she had nowhere to go. She called her son and daughter-in-law, who called friends until they found a place in Austin where she could stay. Despite the fact that it takes eight hours to drive to Austin from New Orleans, she left unprepared.

“I drove straight for two days because you couldn’t stop; there was nowhere to stay,” she recalled. “The rest areas were packed and I had to keep moving. I was fearful for my life and my animals – we had to make it to Austin. It was a nightmare and I wasn’t prepared. In retrospect, I was in survival mode, fueled by adrenaline and weathering high blood sugars.”

One of the many things we might forget as people living with diabetes is how much of an effect adrenaline and stress can have on our blood sugar. It is in our best interest to take the necessary precautions well in advance to lessen the burden on our health when disaster strikes. That includes having the technology you need to test your blood sugar, the medications you need to manage your glucose or other conditions, and back-up emergency supplies like food, batteries, and water.

I reached out to Atkinson, co-chair of the Diabetes Disaster Response Coalition (of which diaTribe is a member) and director of Insulin for Life USA, to find out what advice she has for how to survive the unexpected. She emphasized the importance of preparedness, especially for people living with a chronic illness.

“Always be prepared by building your preparedness kit well before disaster hits and make it customizable to your needs,” Atkinson said. “Be sure to check your kit every quarter to make sure nothing has expired. Other things to consider when packing your preparedness kit ­– a laminated copy of your prescriptions, photo identification, and cash.”

Atkinson suggests leaving the checklist to the experts so you don’t have to worry about making a list yourself. The Diabetes Disaster Resource Coalition makes it easy by providing a downloadable preparedness plan checklist. And you can find even more resources from the coalition here.

Natural disaster

Image source: Cynthia Celt

In 2016, Cynthia Celt and her husband, Mike, set off on an adventure in Costa Rica. After a four hour van ride in the middle of the night in heavy rain, the road was almost a foot deep with mud, and they found themselves stuck in a landslide.

Rescue trucks soon arrived to extract them from the sea of mud. Before Celt knew what was happening, her bag containing all her diabetes supplies was placed into a truck and took off into the dark hills of the unknown country without her. She rode in the back of another truck back to the now powerless resort safely, but without her bag.

“My phone was dead, so I didn’t have my Dexcom readings,” Celt said. “My meter, chargers, and cables were in the back of another truck, which didn’t matter because I had no electricity to charge them. I had little bits of all my diabetes supplies with me, but not nearly enough to sustain me for the entire trip. I was scared to dose as I couldn’t check and had just a candy or two that remained in my purse to treat possible lows.”

Not having access to your diabetes supplies is scary, but Celt said she learned some valuable lessons from this unfortunate experience, including:

  • Always have a blood glucose meter and plenty of strips. “I had somehow failed to bring a meter,” she said. “Lesson learned 100 times over. I now carry a meter and more strips than I will need with me in my purse, even if only headed out for just a few hours!” Make sure that you have all the diabetes supplies you need to manage high or low blood sugar – including your medications and insulin, emergency glucagon, glucose tablets or small snacks, and a blood ketone meter.
  • Having a cell phone battery charger can come in handy. “What saved me when I did get our bags was a 72-hour backup phone charger,” she said. “It allowed me to finally see my blood glucose digits in real time again!” Make sure you have emergency backup batteries and chargers.
  • Research what services will be available to you in the event of an emergency (hospitals, pharmacies, stores to pick up low supplies, etc.). Though this was not her first diabetes travel fumble, being stuck in the dark in a landslide rattled her enough that she now packs back-up diabetes supplies for her back-ups!
  • Don’t be afraid to cause a “fuss” or make a scene if it means having access to the things you need to stay alive. “I should have held onto my bag and helped them understand my life depends on these supplies,” she said. “I was afraid and embarrassed to make an already challenging situation difficult.”

Atkinson stressed that same point, “When evacuating or during any emergency situation,” she said, “define yourself as an insulin dependent person living with diabetes, if you are one. Speak up for yourself.”

In April 2021, Celt was thrown into yet another natural disaster scenario – one that that she had no way to prepare for.

She and her family were camping with friends in the sand dunes not far from their home in Boise, Idaho. They’re fairly seasoned campers, and this was supposed to be just a quick weekend getaway, nothing extreme as far as adventure goes.

She was cruising along in their kayak with her young daughter Madeline and her friend while her husband was in another boat fishing with the others.

“I began to feel the air change and heard sirens from a nearby air base,” Celt recalled. “I saw picnickers scrambling on the shore and then I looked up. What I saw was something I can hardly detail with words. The largest, most sky covering, thunderous sounding wall of sand was charging towards us. It was picking up trees and boats, tossing around bikes and pieces of campers on the land.”

Natural disaster

Image source: Cynthia Celt

Later they learned the storm had overturned semi-trucks and vehicles along the highway. It was what is known as a Haboob, a desert sandstorm common on the Arabian peninsula.

Thankfully before it hit, they were able to make it to shore. Celt grabbed the two small children and slung the dry bag carrying all her diabetes “gear” over her arm.

When out on the water all of her diabetes supplies are always stashed together in a single dry bag. That makes it easy for her to “grab and go”.

“I ran for the hopeful safety of our SUV perched on a shore ridge,” she said. “We piled in and watched as it thundered toward us.”

After several hours they were able to drive to their camper, only to find it ravaged by the storm. The winds did not let up for three days, and they slept in their SUV overnight. However, this time they were a bit more prepared. Celt said, “We always keep an emergency/hidden stash of low supplies, food, and water in the vehicle when camping.”

This scenario was a stark reminder of how quickly disaster can hit. Celt’s words of advice: “It’s impossible to be prepared at all times when living with diabetes. But having your supplies organized, and easy to access and grab on the way out, is incredibly valuable.”

Natural disaster

Image source: Amber Clour

In a different kind of emergency earlier this year, when the pandemic was raging, I packed my bags and relocated to San Antonio, Texas. My casita was the perfect isolation get away, until disaster struck. An unexpected cold front lingered in areas of central Texas where the people and the infrastructure were not equipped to handle below zero temperatures and power outages.

I lost power for days, but fortunately had a gas stove and access to a wood burning fireplace. I also was able to connect with neighbors, and we pooled our resources.

I didn’t fear freezing to death, but I worried my insulin might freeze. However, in the haze of stress I was feeling, I reminded myself the refrigerator wouldn’t get colder than it already was – and the insulation would keep my insulin from freezing. It wasn’t rocket science, but it was clear that my decision fatigue was in full swing. In a situation like this, when freezing your insulin is of great concern, diaTribe’s scientific and medical advisor Dr. Francine Kaufman suggested that you take out a fresh bottle of the insulin you need (basal, prandial, or both) and keep it either in a pocket or a small pack next to your skin. This way you know that you’ll have insulin that won’t freeze.

Stress, both mental and physical, can make diabetes management a nightmare. Keeping my cell phone charged for my CGM data was crucial. Luckily, my Subaru had plenty of gas, so once a day I would sit in the car parked on the street just outside my casita, crank up the heat and charge my phone.

But just when I thought we could get back to normal, our area was notified the water was not safe to drink. I’ve never been in a situation like this and was thankful to have the gas stove to boil water when needed. Not an ideal situation, but I managed.

This entire situation made me think deeply about what’s important when faced with a natural disaster and what things I can realistically do to prepare in advance. Here’s my checklist:

  • HAVE THE EMERGENCY KIT READY TO GO way before an emergency, with a list of all the supplies already in it and what you need to add before you go – like your insulin
  • If you are going to shelter in place, prepare by stocking up on your diabetes supplies and things like non-perishable food, water, batteries, toilet paper, etc., when your budget allows.
  • STAY CALM. It’s okay to be scared and worried, but having your wits about you will make it easier to focus on the items you need to pack.
  • It’s okay to ask for help whether it be for emotional support or supplies. Don’t be embarrassed to contact friends, family, neighbors, local shelters, food pantries, churches, and patient assistance programs. You can also always go to an urgent care facility or hospital if needed. Don’t hesitate in these situations and do what is best for your health and safety.

After some trial and error, I developed a system that makes chaotic situations easier for me to manage. I try to ask myself in these situations, what will I need to survive for at least the next 30 days? Below is a checklist that helps me stay focused.

  1. First, I inventory my supplies so I know what I have and where it is located.
  2. Then I locate a waterproof tub or bag (purchased well in advance) that I can pack my supplies into.
  3. Finally, I start packing my supplies, including:
    • Insulin in a refrigerated case – this is the very last thing I throw in the tub when I am headed to an emergency shelter
    • Syringes for my medication
    • A copy of all my prescriptions
    • Blood glucose meter and plenty of test strips
    • Any CGM supplies I might need including sensors, applicators, and my phone
    • Insulin pump supplies
    • Low blood sugar snacks and glucose tablets
    • Other medications I might need (such as an inhaler, blood pressure pills, glucagon pen, etc.)
    • My driver’s license, passport, cash, and credit cards
    • My diabetes bracelet or disability jewelry
    • Emergency supplies like a flashlight

No one wants to prepare for a natural disaster, but if you take the time now to make sure you have everything you need, you won’t throw your diabetes under the bus when catastrophe strikes.

Below are a few helpful sites to make your natural disaster preparation easy:

And check out some other articles you might want to visit for tips and tricks:

About Amber

Amber Clour was born and raised in Norman, Oklahoma. Twenty-one days after her eighth birthday, she was rushed to Children’s Hospital where she spent two weeks learning how to live her new life with type 1 diabetes.

Since then, her life has been filled pursuing her passion for art, advocacy, non-profit ventures and travel. In 2015 she stepped down as Executive Director for a community artspace and gallery she founded to co-found DiabetesDailyGrind.com and the Real Life Diabetes Podcast. Amber’s – no filter – approach to sharing an honest look into her daily life resonates with many in the diabetes community. She hopes her story and those of podcast guests remind ALL people living diabetes – you are NOT alone.

Source: diabetesdaily.com

Hitting a Nerve: Introduction to Neuropathy

This content originally appeared on diaTribe. Republished with permission.

By Cheryl Alkon

What is neuropathy? And more specifically, what is diabetic neuropathy? What are the symptoms and how can you prevent and treat neuropathy?

When someone hears about the long-term complications of diabetes, problems with the feet, foot ulcers, and even amputations are often brought up and can be some of the scariest outcomes. What leads to these issues is something called neuropathy, or damage to the nerves.

But neuropathy, and those subsequent complications, aren’t by any means a given – and prevention is possible. What is neuropathy and what can you do to avoid it entirely, or minimize it so that you can keep your feet, and the rest of your body, as healthy as possible?

What is the difference between neuropathy and diabetic neuropathy?

Neuropathy is the term used to describe any damage to nerves in the body (for example, an injury from a car accident can damage the nerves). Diabetic neuropathy, or diabetes-related neuropathy, is the term used to specifically describe the nerve damage from high glucose levels (hyperglycemia) over the long term.

Diabetes can cause three main types of neuropathies: peripheral neuropathy (medically referred to as distal symmetric sensorimotor polyneuropathy), autonomic neuropathy, and focal neuropathy.

Peripheral neuropathy affects the nerves outside of the brain and spinal cord, and often leads to symptoms involving the hands and feet. “This is what most people associate with diabetes-related neuropathy,” said Chris Memering, a nurse and inpatient diabetes care and education specialist at CarolinaEast Health System in New Bern, North Carolina.

Peripheral neuropathy involving the feet is the most common form of diabetic neuropathy. Loss of function in particular nerve fibers can change sensation and reduce strength in the foot. Loss of sensation can lead to injury from shoes that don’t fit, stepping on sharp objects you can’t feel, or not knowing the sidewalk is too hot. Neuropathy can also lead to pain, burning or other unpleasant sensations which may respond to medication.

But diabetes isn’t the only condition that can cause peripheral neuropathy. Other conditions that can lead to peripheral neuropathy include heavy alcohol consumption, trauma, nerve entrapment (such as that which occurs in carpal tunnel syndrome), vitamin B deficiency, chemotherapy, and an autoimmune process that attacks the nerves.

Neuropathy can also affect the functioning of the autonomic nervous system (which controls things like blood pressure, heart rate, digestion, and bowel and bladder function). This is called autonomic neuropathy. Autonomic neuropathy can lead to a variety of complications.

“In diabetes care, many people are familiar with hypoglycemia unawareness, erectile dysfunction or female sexual dysfunction, gastroparesis [when the stomach can’t empty properly and digestion slows], neurogenic bladder [when the nerves that tell your brain to tighten or release the bladder muscles don’t operate properly], or orthostatic blood pressure changes [dropping blood pressure when you stand up],” Memering said, adding that all these could be a result of neuropathy.

Finally, focal neuropathy results from issues with one or more nerve roots and usually happens suddenly. Focal neuropathies often involve both motor functioning – such as weakness – and sensory deficits, which can cause discomfort and pain.

What causes neuropathy?

Chronic hyperglycemia can damage both small and large nerve fibers. Over time, elevated glucose levels, often made worse by high triglycerides (a type of fat that can be found in the blood) and associated with inflammation (the body’s natural way of fighting infection) can cause damage to the nerves. That damage disrupts the way nerves interpret sensory information and how the messages about sensation are transmitted to the brain.

Usually, nerve damage from high blood sugar levels happens in the long nerves first (which run from your spine down to your toes), which is why the symptoms of peripheral neuropathy occur first in the feet. “The length of time someone has lived with diabetes increases their risk of developing neuropathies, as does that person’s level of blood glucose, in terms of A1C, Time in Range, and glucose variability,” Memering explained.

In essence, higher glucose levels over time increases your risk for developing neuropathy. This was confirmed by the famous Diabetes Control and Complications Trial (DCCT) and Epidemiology of Diabetes Interventions and Complications study (EDIC). The studies showed that the prevalence of confirmed peripheral neuropathy was 64% lower among participants in the intensive management group (those who managed their blood glucose carefully with treatment and kept their levels as close to normal as possible).

What does neuropathy feel like?

Symptoms of neuropathy usually start in the toes and progress upward. The sensations experienced with peripheral neuropathy differ from person to person. Some describe the feelings they have as numbness or tingling, while others say it feels like burning. Some say they are sensitive to being touched and cannot bear the feeling of a sheet or blanket covering their feet, while others describe it as feeling like they are always wearing a sock or a glove.

“Ultimately, you could end up losing protective sensation – which can be very dangerous and puts you at risk of not realizing when a part of your body is hurting or being injured,” Memering said. “While you may be able to still feel pressure – you know you are stepping on the ground with your foot – you may not be able to feel pain if you step on something sharp or hot.” This means you might not withdraw your foot from the unsafe environment, harming it further, and without realizing the extent of the damage.

The biggest concern about peripheral neuropathy involving the feet is that the loss of normal pain sensation can lead to greater skin and tissue damage. “Injury can result in the formation of a foot ulcer, which, if infected, can progress to ongoing tissue damage that can lead to amputation,” said Dr. Robert Gabbay, the chief scientific and medical officer for the American Diabetes Association. That’s why it’s so important to prevent, recognize, and treat any symptoms of neuropathy.

How is neuropathy diagnosed?

To assess for neuropathy, your healthcare team should do a thorough examination of your feet looking for sores or ulcers, changes in skin color, diminished pulses and any abnormality or injury to your foot. They can test for diminished strength, a change in your ability to know the position of your toes, and a change in sensation or sensory perception.

A foot exam will always involve taking off your socks and shoes, and your healthcare professional will inspect your feet to check for color changes, pulses, open areas, redness, rashes, and the overall condition of your feet, said Dr. Cecilia C. Low Wang, a professor of endocrinology, diabetes, and metabolism at the University of Colorado Anschultz School of Medicine.

A monofilament test uses a soft fiber to test for sensation in various parts of the feet and body, and a tuning fork can also help healthcare professionals understand how much sensation a person has lost. The monofilament test, as well as a pinprick test, can check to make sure you have good sensation, while other tests will evaluate vibration and position sense (whether you are aware of where your foot is). “The main question I would suggest asking your diabetes provider is whether they notice anything concerning about your foot exam, and whether they think you need to do anything different, or see an additional specialist, such as a podiatrist,” said Dr. Low Wang.

In this age of telehealth visits, some podiatrists have been sending a monofilament (a small strand of nylon attached to a piece of plastic) to a person’s home and teaching them how to use it to determine if they have reduced sensation in different areas of the feet. Podiatrists might even examine a person’s foot onscreen during a video visit and ask questions about how the foot feels or looks. “If there’s something of concern, they will schedule an in-person visit,” added Memering.

If someone is experiencing symptoms of autonomic neuropathy, a healthcare professional may recommend a specific test depending on what the autonomic symptoms are. For example, if there are issues with blood pressure control, taking your blood pressure as you change positions from lying to sitting to standing or using a formal tilt-table test, may show loss of autonomic control of how your body regulates your blood pressure. If you have symptoms of delayed gastric-emptying (stomach-emptying), specialized radiology tests might be ordered that show the time it takes for food to exit the stomach. The Mayo Clinic has an informative list about many of these tests. If you have any symptoms of autonomic neuropathy, such as bladder or erectile dysfunction, feeling faint on standing up, or bloating and fullness, talk to your healthcare professional and explain what you are experiencing.

What are the best treatment options for neuropathy, especially in the hands and feet?

Although it is not always possible to prevent neuropathy completely, the best way to slow its progression (as shown in the DCCT) is to closely manage your blood sugar levels and try to stay in range as much of the time as possible. If neuropathy does develop, medications can decrease the burning and tingling sensations, said Dr. Gabbay.

“Diabetes is a leading cause of neuropathy, and the higher someone’s blood sugar levels are over time, the more likely they are to develop neuropathy,” Dr. Gabbay said. “The good news is by managing blood sugar levels, one can significantly reduce their risk of developing neuropathy.”

With painful neuropathy, “treatments are generally to try to manage symptoms,” Memering said. “Medications such as Neurontin [gabapentin, a drug used for pain and seizures], Lyrica [pregabalin, a drug used for pain and seizures], or Cymbalta [duloxetine, a drug used for chemical balance in the brain] may be used to help with pain associated with painful peripheral neuropathies. These medications can be very effective, but it may take a few weeks to adjust and find the right dose. However, people should know that the medications can also be somewhat sedating.” Other drugs that may be effective include drugs used for mood disorders such as venlafaxine, nortriptyline, or amitriptyline, said Dr. Low Wang, but they may have side effects at higher doses and with older age.

Dr. Gabbay added that neuropathy “is a very active area of research to identify new and effective treatments.”

There are also various treatments to help improve the symptoms of autonomic neuropathy:

  • For Postural Blood Pressure Changes:
    • If you have a significant decrease in your blood pressure on standing, your healthcare professional can teach you how to get up slowly to allow your body to regulate your blood pressure with positional change.
    • You can also wear an abdominal binder, which Memering described as “a big elastic girdle that puts more pressure on the big blood vessels in the body,” so that they have more support when changing positions.
    • Other treatments include adjusting salt intake, using compression stockings, doing physical activity to avoid deconditioning, and staying hydrated, said Dr. Low Wang.
  • For Neurogenic Bladder:
    • If you are experiencing a neurogenic bladder, urinating at regular intervals during the day and night can help the bladder empty even if you no longer feel the urge to urinate. You might also undergo a urinalysis or a bladder scan, said Dr. Low Wang. Medications can also help.
  • For Gastroparesis:
    • Eating low-fiber, low-fat foods in smaller and more frequent meals and getting a greater proportion of calories from liquids might help, said Dr. Low Wang.
    • Sometimes the drug metoclopramide (Reglan) may be prescribed and gastric electrical stimulation might be used in severe cases.
  • For Erectile Dysfunction:
    • You may be prescribed one of the medications – sildenafil, tadalafil, avanafil, or vandenafil – but you may also need to undergo a physical exam, or other tests.

If you are experiencing any of the symptoms of neuropathy, you should speak with your healthcare professional to determine what diagnostic tests need to be done and what treatment course might be best for you.

Can you reverse diabetic neuropathy?

Currently, neuropathy can’t be reversed, but its progression may be slowed. Keeping blood sugar levels in the recommended targets is the key to doing so, Memering said. “The use of diabetes technology may be very helpful – especially continuous glucose monitors – for keeping your blood sugar in range, along with eating a varied diet, including vegetables and fruits, and exercising regularly,” she said.

Tips for living with diabetes and neuropathy

The two best things someone with diabetic neuropathy can do are to:

  1. Manage their blood sugar levels to keep the neuropathy from getting worse.
  2. Check their feet regularly, both at home and during healthcare appointments.

Check your feet at home

Dr. Gabbay, Dr. Low Wang, and Memering each recommended that all people with diabetes, whether young or old, newly diagnosed or not, should regularly check their feet. Dr. Gabbay advised, “Use a mirror to see the bottoms of the feet and make sure there are no cuts or ulcerations” that would need immediate attention to ensure they don’t worsen. If need be, ask someone in your household to help you inspect your feet.
To help avoid foot injury, Dr. Low Wang recommended: “Always wear socks and well-fitting shoes, avoid going barefoot, and look at shoes before putting them on to be sure there is nothing in them.”

No matter where you are in your diabetes journey, daily foot checks “partly establish the habit before there are any problems, but are also a way to get to know your body so you can understand what is normal for you and what is not,” Memering said. “That way, when there is a change, you can all your healthcare office right away. Don’t wait until your next appointment ­ – call,” she said, adding that they should be able to tell you if you need to make an appointment right away.

Remember, as with many complications of diabetes, for neuropathy prevention is key! To learn more, view or download our infographic on preventing neuropathy.

About Cheryl

Cheryl Alkon is a seasoned writer and the author of the book Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby. The book has been called “Hands down, the best book on type 1 diabetes and pregnancy, covering all the major issues that women with type 1 face. It provides excellent tips and secrets for achieving the best management” by Gary Scheiner, the author of Think Like A Pancreas. Since 2010, the book has helped countless women around the world conceive, grow and deliver healthy babies while also dealing with diabetes.

Cheryl covers diabetes and other health and medical topics for various print and online clients. She lives in Massachusetts with her family and holds an undergraduate degree from Brandeis University and a graduate degree from the Columbia University Graduate School of Journalism.

She has lived with type 1 diabetes for more than four decades, since being diagnosed in 1977 at age seven.

Source: diabetesdaily.com

Insulin at 100: An Inspirational but Complicated History

This content originally appeared on diaTribe. Republished with permission.

By James S. Hirsch

The discovery of insulin promised a new age for an ancient condition but introduced unexpected challenges. James S. Hirsch explores the riveting history of this miracle drug on its 100th anniversary.

PART 1: The Discovery

It was hailed as a miracle cure, a boon to the human race, an elixir that turned death into life and whose discovery was freighted with Biblical allusions. This year marks the one-hundredth anniversary of insulin, and the drug, first coaxed from the pancreas of dogs by unheralded scientists in a crude Canadian laboratory, remains one of the most remarkable feats in medical history.

But the history of insulin is not one of unalloyed celebration. It has moments of triumph as well as grievance. Like diabetes itself, it’s complicated.

***

It’s easy to lose sight of what insulin’s discovery represented in 1921. As the historian John Barry notes, the previous 2,500 years had seen virtually no progress in the treatment of patients, and the world had just emerged from the Spanish flu, which killed more than 50 million people and was ultimately subdued not by medical science but by the immune system’s adapting to the virus.

In other words, doctors in 1921 were all but impotent against any serious disease, including diabetes.

Then came insulin.

Anyone today who uses insulin does not need to be told of its life-saving power, and I am hardly an impartial observer, as it has kept me alive for the past 44 years.

Insulin today, however, bears little resemblance to what it was when I was diagnosed, let alone to what it was in its early decades. Patients then relied on imposing glass syringes whose thick needles had to be sharpened on whet stones and boiled for reuse. Nowadays, the ultrafine needles are disposable; smart insulin pens communicate with the cloud; and sleek insulin pumps are connected to continuous glucose meters. The insulin itself has been transformed – from impure concoctions derived from the smashed, blood-soaked pancreases of pigs or cows to laboratory-created, gene-splitting analogs with an array of pharmacokinetic properties. Inhalable insulin, long promised and finally delivered, represents a vaporous new-age alternative.

Research on insulin has attracted some of the world’s most brilliant scientists, as Nobel prizes have been given for insulin-related research in four separate decades. The work conducted on human insulin in the 1970s and ’80s, involving recombinant DNA, helped give birth to the modern biotechnology industry, including such pillars as Genentech and Biogen.

But there is more to this history than scientific breakthroughs and professional laurels.

Insulin has been misrepresented and misunderstood, even by some of its most important standard bearers, to the detriment of patients. For many years, the miraculous power of insulin, promoted in marketing efforts and publicity stunts, misled the public about the real-life experiences of those actually living with diabetes. In more recent years, insulin has been shunned by type 2 patients who could be using it or has been underused by type 1 patients. We are in the midst of a global diabetes epidemic, but insulin use has actually been declining because better therapies for type 2 diabetes have usurped insulin’s preeminence. And as insulin prices have soared, the insulin companies themselves, in a stunning reversal, have been transformed in some eyes from saviors to villains.

Meanwhile, the future of insulin itself is not certain, as better therapies could someday make obsolete the miracle drug of 1921.

***

Insulin was not technically “discovered” in 1921. Its role in the body was already known, its connection to diabetes already established.

The disease was first identified in 1500 BC, and in 250 BC, the disorder was named “diabetes” from the Greek word syphon, as its victims suffered from excessive urination. (One researcher later described diabetes as “the pissing evil.”) Researchers’ understanding of the disease advanced in 1869, when a German medical student named Paul Langerhans discovered “islands of cells” in the pancreas; and over the next three decades, investigators identified these cells as regulating glucose metabolism and directly associating them with diabetes. By 1916, the word “insulin” had been coined to describe that pancreatic substance.

But after more than 3,000 years, there was still no effective treatment for the disease. Researchers, however, did recognize that carbohydrates accelerated a patient’s decline, so the best treatment, developed in the early 1900s, was to withhold food – also known as the starvation diet, which allowed patients to extend their lives in sinister emaciation. Most of these patients were children, so grieving parents had to watch their children waste away – sometimes clustered together in hospital wards – and die either from starvation or diabetic ketoacidosis.

That made the search for insulin even more desperate, as investigators around the world sought to discover a “pancreatic extract” to save these dying children against the ravages of an ancient disease.

Research

Image source: iStock Photo

The breakthrough happened in Toronto in 1921, led by a prickly researcher who was a mere five years out of medical school. Frederick Banting had tried his hand as a surgeon but couldn’t earn a living, so he turned to teaching. He had no research experience and knew little about diabetes; but he had read a paper on it, and he later said that he had a dream about discovering insulin. In a longshot bid, Banting began his work in May at the University of Toronto, and he was assisted by a young medical student named Charles Best. They removed the pancreases from dogs to make them diabetic and then developed pancreatic extracts to try to lower the blood sugars. It was bloody, messy, difficult work – seven dogs died the first two weeks – but by August, one of the extracts, delivered by intravenous injections, proved successful. A biochemist, James Collip, was summoned to try to purify it for human use – he later called it “bathroom chemistry” – and on January 11, 1922, a 14-year-old boy, Leonard Thompson, received the first injection of insulin.

It was described as a “murky, light brown liquid containing much sediment,” it was given to him over several weeks, and it worked: the sugar and ketones in the boy’s urine disappeared.

“Diabetes, Dread Disease, Yields to New Gland Cure,” the New York Times announced.Tweet this“Diabetes, Dread Disease, Yields to New Gland Cure,” the New York Times announced.

The Toronto researchers couldn’t mass produce insulin, but Eli Lilly could, at least in the United States. (Other companies did in Europe.) Eli Lilly is headquartered in Indianapolis and, at the time, was in convenient proximity to many stockyards. The company stored a million pounds of frozen pancreases from pigs and cows to keep up with demand – there were an estimated one million Americans who needed insulin – and the company’s scientists, managers, and laborers were every bit the heroes as the Toronto researchers.

This new miracle drug did not disappoint.

Frederick Allen, one of America’s leading diabetologists, said his patients, upon receiving insulin, “looked like an old Flemish painter’s depiction of a resurrection after famine. It was a resurrection, a crawling stirring, as of some vague springtime.”

Elliott Joslin, America’s preeminent diabetes clinician, described his patients who took insulin as the “erstwhile dead” and invoked Ezekiel’s vision of the valley of the dry bones, in which God says, “Come from the four winds, O breath, and breathe upon these slain, that they may live.”

The photographs told an even more dramatic story: In one famous picture, a naked 3-year-old boy who weighs 15 pounds clings to his mother, his face grimacing, his ribs exposed. After taking insulin for only three months, a head shot shows the boy with full cheeks, alert brown eyes, and dark locks of hair. He looks normal – and cured.

If there were any doubt about insulin’s curative powers, Elizabeth Evans Hughes removed them. Her father, Charles Evans Hughes, had been the governor of New York, a justice on the U.S. Supreme Court, a candidate for president, and in 1922, was the U.S. Secretary of State. Elizabeth had been diagnosed with diabetes in 1919, so when she took her first dose of insulin in 1922, she became the poster child for this new drug.

After more than three millennia, it appeared that medical science had defeated diabetes.Tweet this“Hughes’ Daughter ‘Cured’ of Diabetes” declared one unidentified newspaper. After more than three millennia, it appeared that medical science had defeated diabetes.

Stay tuned for parts two and three of this riveting story over the next two weeks!

I want to acknowledge the following people who helped me with this article: Dr. Mark Atkinson, Dr. David Harlan, Dr. Irl Hirsch, Dr. David Nathan, Dr. Jay Skyler, and Dr. Bernard Zinman. Some material in this article came from my book, “Cheating Destiny: Living with Diabetes.”

About James

James S. Hirsch, a former reporter for The New York Times and The Wall Street Journal, is a best-selling author who has written 10 nonfiction books. They include biographies of Willie Mays and Rubin “Hurricane” Carter; an investigation into the Tulsa race riot of 1921; and an examination of our diabetes epidemic. Hirsch has an undergraduate degree from the University of Missouri School of Journalism and a graduate degree from the LBJ School of Public Policy at the University of Texas. He lives in the Boston area with his wife, Sheryl, and they have two children, Amanda and Garrett. Jim has worked as a senior editor and columnist for diaTribe since 2006.

Source: diabetesdaily.com

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