Naturally, people whose lives depend on taking insulin get very nervous at the thought of not having access to it. That begs the question so many wonder at times. In the worst-case scenario, just how long would we be able to hang on without it?
Conventional wisdom says the answer is roughly 3 to 4 days. But is that really true?
DiabetesMine set out to do some fact-checking on this issue.
Let’s talk about the physical process that sets in when a person with diabetes does not get enough insulin into their body.
Very quickly, severe hyperglycemia sets in. That is high blood sugar that leads to a state called diabetic ketoacidosis (DKA), which untreated leads to death.
Many people believe that DKA automatically means high blood sugars, that without the one you don’t have the other. This isn’t true.
Basically, what’s going on is insulin helps sugar enter the cells, which use it for fuel. Without insulin, the body cannot access enough sugar to function properly, so your liver begins to turn some of the body fat into acids called ketones. These build up in the bloodstream and spill over into the urine. When these excess ketones get into the blood, the blood becomes acidic, causing DKA, which is a combination of very high blood sugar, dehydration and shock, and exhaustion.
There are so many resources outlining the signs and symptoms of DKA, including the
- being very thirsty
- urinating a lot more than usual
If untreated, more severe symptoms can appear quickly:
- fast, deep breathing
- dry skin and mouth
- flushed face
- fruity-smelling breath
- muscle stiffness or aches
- being very tired
- nausea and vomiting
- stomach pain
Without treatment, DKA leads to death.
Generally, the first signs of DKA show up once the blood glucose level has been north of 300 mg/dL for about 4 hours, but how quickly things get out of hand at that point is highly variable. Some people with diabetes feel ill immediately, while others can wander around in a daze for days.
If you have any residual insulin at all in your system, it can help hold off DKA even when your blood sugar level is high, according to Dr. Silvio Inzucchi, clinical director of the Yale Diabetes Center.
Hospitalizations for DKA are unfortunately on the rise in the United States.
There is no single definitive answer to that question, says Dr. Francine Kaufman, renowned endocrinologist, author, professor, and current chief medical officer of implanted glucose sensor company Senseonics.
She breaks it down this way:
- People with type 2 diabetes (T2D) who take insulin “could last quite a bit of time — maybe years — depending on how their other meds might be working.
- New-onset type 1s (T1Ds) “might have some remission phase and residual insulin secretion.” Similar to what doctors saw before the
discovery of insulin, “people could last months to maybe a year, particularly on a carbohydrate-restricted diet.”
- Someone with LADA (latent autoimmune diabetes in adults) might have some residual insulin as well and might last days or weeks, or maybe even longer, again depending on how much insulin is left. “One might be able to assess by how much insulin they take on a routine basis. If it is about 20 units a day or less, that might indicate they have residual insulin” being produced in the pancreas.
- For people with “traditional” T1D, particularly those diagnosed in childhood or adolescence, to survive without insulin, “they would need to stay on carbohydrate restriction and stay very hydrated,” Kaufman says. But their survival rate is “multiple days, to a few weeks, getting sicker and weaker as time goes on. Even a little insulin a day would help prolong this, particularly long-acting insulin. Exercising would not be beneficial to bring glucose down… too much physiologic stress that could elevate glucose further.”
The risk for people with T1D is a quick death from DKA (insulin deficiency exacerbated by illness, stress, and dehydration). “It only takes days to progress, and it is worsening over a day or two or three — so that gets you a week or so plus/minus, outside maybe 2 weeks,” Kaufman explains.
In fact, DKA from lack of insulin is the leading cause of death in
Yale’s Dr. Inzucchi also says this is a tougher question than it appears on the surface. He points out that many type 1s can have some “residual beta-cell capacity” even sometimes years after diagnosis. He tells us that how fast DKA advances also depends on how well you keep yourself hydrated, and how many carbs you are consuming that will “feed the highs.”
“I will see that in someone with 0 percent insulin production, they’ll begin to fall ill within 12 to 24 hours after their last insulin injection, depending on its duration of effect. Within 24 to 48 hours, they’ll be in DKA. Beyond that, mortal outcomes would likely occur within days to perhaps a week or two. But I could not see someone surviving much longer than that.”
First of all, be aware of the symptoms, if any. Our own DiabetesMine correspondent Wil Dubois, who landed in the hospital with DKA, said this:
“The main symptoms of DKA that we’re told to watch for — other than those associated with high blood sugar in the first place, like crazy thirst and peeing like a racehorse — are nausea or vomiting, abdominal pain, fruity-smelling breath, rapid breathing, and confusion.”
“Of course, you can’t smell your own breath. If you are confused, you probably don’t know it. And most people aren’t aware of their respiration rate. So the main warning sign of impending DKA that all type 1s are taught to be alert for is the union of nausea and abdominal pain in the presence of high blood sugar. And I never had any. Nausea or pain, but clearly as my doctor noted, I was experiencing DKA.”
If you know that you have missed a shot or are running low / rationing insulin, it’s a good idea to keep very close tabs on your blood sugar readings and keep ketone test strips handy.
“For someone with established type 1 diabetes, if they really face a limitation of their insulin supply, don’t let it run out completely! Stretch it out,” encourages Inzucchi.
Basal insulin, the long-acting “background” type, continues to have some effect for a full day or more after the last shot. So it would be a good idea to ration that type above all. This also underscores why it’s important for people who use insulin pumps — which only contain rapid-acting insulin — to also have basal insulin stored for emergencies.
We hate to break it to you, but they didn’t.
Looking at historical records from diabetes pioneers Dr. Eliott Joslin and Dr. Frederick Allen before the advent of medical insulin, we see that they were only able to keep patients alive for months, sometimes more than a year, by
Joslin proudly wrote that, “Whereas formerly the prognosis for children less than 10 years of age was measured in months, today it is rare for a child to live for less than one year.” Ultimately, all of Joslin’s pre-insulin patients died. 100 percent of them. Those who didn’t starve succumbed once their insulin production dropped to zero.
But of course, we now know that the onset of T1D is a messy affair. The autoimmune process that drives it doesn’t happen overnight. Insulin production lingers for many months in a phenomenon called the diabetes honeymoon.
So history can only show us how long we can cope starved in the honeymoon phase of the disease, not how long a full-fledged T1D will last sans insulin in today’s modern world.
DKA is the leading cause of death in people with T1D under age 24. But stats indicate that there are only several thousand deaths from DKA per year in the whole country. Most cases occur right at disease onset, and most receive some sort of medical intervention in a timely manner. The
So the odds for survival are much more in our favor than they ever have been, historically speaking.
Unfortunately, a big reason that those with existing insulin-dependent diabetes often fall into DKA or go without this needed hormone is because of affordability and access — especially in the United States, where the outrageously high price has created an
Too many people — as many as 1 in 4 people (at least) — are forced to ration insulin, stretching out their doses to conserve it until they can get more.
It also can’t be overlooked that the insulin pricing issue is likely tied to the
If you or someone you know cannot afford insulin, you might turn to a number of options:
- Hospital emergency rooms. If you’re out of insulin and in dire need, go to the emergency room. Under the Emergency Medical Treatment and Active Labor Act, the emergency room cannot turn you down in a life threatening emergency if you do not have insurance or the ability to pay.
- Savings programs by insulin makers. Insulin manufacturers offer pharmaceutical assistance programs (PaPs) to help people afford their insulin. Each of the three major manufacturers — Eli Lilly, Novo Nordisk, and Sanofi — have their own programs. You’ll need to meet set income requirements to qualify for these programs.
- State copay caps on insulin. A number of states have enacted insulin copay caps for those with certain insurance plans, meaning you don’t have to pay more than a certain amount for a particular insulin prescription at the pharmacy each month. However, these are often talked about in misleading ways, because these don’t apply to everyone and have different restrictions for the small number of state-regulated insurance plans affected. There is discussion by Congress about a federal copay cap, but that has not been passed as of April 2022.
- Walmart’s ReliOn insulin. Walmart carries lower-priced insulin in its ReliOn brand. While these can include over-the-counter versions like Regular (R) and intermediate (N), and NPH brands that are older human versions, starting in 2021, they began selling ReliOn Novolog. This works the same as Novo’s brand name Novolog insulin but is less expensive than the “normal” brand-name version. You’ll still need an Rx for these insulins.
- Pharmacy emergency refills. Several states have enacted laws requiring emergency refills of insulin at the pharmacy counter. Each state is different, and the restrictions and requirements differ, but these are commonly referred to as “Kevin’s Law” in reference to an Ohio man who died after he couldn’t get an insulin refill quickly enough during the holidays.
- Samples from doctors. While this is certainly not possible everywhere, some doctors and clinics will help their patients out with samples of insulin in an emergency situation. Community health centers often have sliding scale options that allow you to get affordable insulin. You can locate a community health center near you by using this interactive map.
- Mutual aid. People in the Diabetes Online Community (DOC) often help each other out. There is a grassroots group known as Mutual Aid Diabetes (MAD) that often assists people in connecting to help with insulin or diabetes supplies, but many also connect privately on social media.
None of these above points is a solution to the insulin pricing crisis in America, but they might help someone be able to get their hands on needed insulin in the short term.
Two helpful resources for more information are InsulinHelp.org from the American Diabetes Association and GetInsulin.org from Beyond Type 1.