Getting Started with Insulin if You Have Type 2 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Frida Velcani

New to insulin? Learn about insulin dosing and timing and how often to test your blood sugar levels if you have type 2 diabetes.

If you have type 2 diabetes, it is likely that your treatment regimen will change over time as your needs change, and at some point, your healthcare professional may suggest that you start taking insulin. While this might feel scary, there are millions of others living with type 2 diabetes and taking insulin, so it’s definitely manageable.

Click to jump down:

Why do some people with type 2 diabetes need to take insulin?

Type 2 diabetes can progress with time, which means that it gets more difficult for a person’s body to regulate glucose levels. The body’s many cells become less responsive to insulin (called increased insulin resistance), and the specific cells in the pancreas that produce insulin make less of it (called beta cell insufficiency). This is not necessarily related to a person’s diabetes management, and it is likely not possible to prevent.

For many people, adjusting lifestyle factors such as a reduced calorie diet and increased physical activity are key to keeping blood glucose levels stable and in a target range. Healthcare professionals may also recommend that people with type 2 diabetes take additional medications like metforminDPP-4 inhibitorsSGLT-2 inhibitors, or GLP-1 agonists to their treatment plan to improve glucose management, reduce A1C, lose weight, or support heart and kidney health.

When do people with type 2 diabetes start insulin?

After 10 to 20 years, many people with type 2 diabetes will begin insulin therapy, although every person’s journey with type 2 diabetes is different. This happens when lifestyle changes and medications aren’t keeping your glucose levels in your target range. It is important that you start treatment as early as possible to avoid persistent hyperglycemia (high blood sugar), which can lead to long-term health complications affecting your heart, kidneys, eyes, and other organs.

What are the different types of insulin?

The key to transitioning to insulin is knowing your options. Some people taking insulin need to use both a basal (long-acting) and a prandial (rapid-acting or “mealtime”) insulin each day, while others may only need to use basal insulin. Learn about your options here.

  • Basal (long-acting) insulins are designed to be injected once or twice daily to provide a constant background level of insulin throughout the day. Basal insulins help keep blood sugars at a consistent level when you are not eating and through the night but cannot cover carbohydrates (carbs) eaten for meals or snacks or glucose spikes after meals.
    • Some people use other medications, like GLP-1 agonists, to help cover mealtimes. GLP-1/basal combination treatments for people with type 2 diabetes combine basal insulin with GLP-1 agonist medication in one daily injection. This combination can effectively lower glucose levels while reducing weight gain and risk of hypoglycemia (low blood sugar). Learn more here.
  • Prandial (rapid-acting or “mealtime”) insulins are taken before mealtime and act quickly to cover carbohydrates eaten and bring down high sugar levels following meals. Ultra-rapid-acting prandial insulins can act even more rapidly in the body to bring down glucose levels. Rapid and ultra-rapid insulins are also taken to correct high glucose levels when they occur or are still persistent a few hours after a meal.
  • Basal and prandial insulins are both analog insulins, meaning they are slightly different in structure from the insulin naturally produced in the body. Analog insulins have certain characteristics that can be helpful for people with diabetes. Human insulins, on the other hand, were developed first and are identical to those produced by the human body. Human insulins are classified as regular (short-acting insulin) or NPH (intermediate-acting). These are generally cheaper than analog insulins and can be bought without a prescription at some pharmacies.

Although many people use both basal and prandial insulin – which is called multiple daily injections of insulin (MDI) and consists of one or two injections of basal insulin each day as well as prandial insulin at meals – people with type 2 diabetes who are beginning insulin therapy may only need basal insulin to manage their glucose levels. Basal insulin requires fewer injections and generally causes less hypoglycemia. For these reasons, many healthcare professionals recommend basal insulin when you first start insulin therapy.

How do I take and adjust my insulin doses?

It is important to learn the different methods of taking insulin and what kinds of insulin can be delivered through each method. There are several ways to take insulin – syringe, pen, pump, or inhalation – though injection with a syringe is currently the most common for people with type 2 diabetes. There are many apps that can help you calculate your insulin doses.

  • Insulin pens are considered easier and more convenient to use than a vial and syringe. There are different brands and models of insulin pens available. Smart pens are becoming increasingly common and can help people manage insulin dosing and tracking. They connect to your smartphone and help you remember when you took your last dose, how much insulin you took, and when to take your next one.
  • Insulin pumps are attached to your body and can be programmed to administer rapid-acting insulin throughout the day, to cover both basal and prandial insulin needs. When you need to take insulin for meals or to correct high glucose, calculators inside the pump can help determine the correct dosage after you’ve programmed them with your personal insulin pump settings.
  • Inhaled insulin is ultra-rapid acting insulin and can replace insulin used for mealtime and corrections of high glucose. It is taken through an inhaler and works similarly to injected prandial insulin. People with diabetes who do not want to inject prandial insulin might use this, but it’s not for people who only use basal insulin. The only approved inhaled insulin on the market is the ultra-rapid-acting mealtime insulin Afrezza.

Your insulin regimen should be tailored to fit your needs and lifestyle. Adjusting your basal insulin dosage and timing will require conversations and frequent follow-up with your healthcare team. When initiating insulin therapy, you may be advised to start with a low dose and increase the dose in small amounts once or twice a week, based on your fasting glucose levels. People with diabetes should aim to spend as much time as possible with glucose levels between 70-180 mg/dl. Insulin may be used alone or in combination with oral glucose-lowering medications, such as metformin, SGLT-2 inhibitors, or GLP-1 agonists.

One of the most important things to consider is the characteristics of different insulin types. To learn more, read “Introducing the Many Types of Insulin – Is There a Better Option for You?” and discuss with your healthcare team.

In order to dose insulin to cover meals or snacks, you have to take a few factors into consideration. Your healthcare team should help you determine what to consider when calculating an insulin dose. Prandial insulin doses will usually be adjusted based on:

  • Current blood sugar levels. You’ll aim for a “target” blood sugar, and you should know your “sensitivity” per unit of insulin to correct high blood sugar levels.
    • Insulin sensitivity factor (ISF) or correction factor:  how much one unit of insulin is expected to lower blood sugar. For example, if 1 unit of insulin will drop your blood sugar by 25 mg/dl, then your insulin sensitivity factor is 1:25. Your ISF may change throughout the day – for example, many people are more insulin resistant in the morning, which requires a stronger correction factor.
  • Carbohydrate intake. Insulin to carb ratios represent how many grams of carbohydrates are covered by one unit of insulin. You should calculate your carbohydrate consumptions for each meal.
    • Insulin to carbohydrate ratio:  the number of grams of carbs “covered” by one unit of insulin. For example, a 1:10 insulin to carbohydrate ratio means one unit of insulin will cover every 10 grams of carbohydrates that you eat. For a meal with 30 grams of carbohydrates, a bolus calculator will recommend three units of insulin.
  • Physical activity. Adjust insulin doses before, and possibly after, exercise – learn more about managing glucose levels during exercise here.

Learning to adjust your own insulin doses may be overwhelming at first, especially given the many factors that affect your glucose levels. Identifying patterns in your glucose levels throughout the day may help you optimize the timing and dosing of your insulin. Your healthcare professional, a certified diabetes care and education specialist, or insulin pump trainer (if you use a pump), can help guide you through this process. Do not adjust your insulin doses without first talking to your healthcare team.

How often should I test my blood sugar?

The frequency of testing will depend on your health status and activities during the day. Initially, you may be advised to check your blood glucose three to four times a day. As a starting point, check in with your healthcare team about how often to check your blood sugar. Many people test before meals, exercise, bedtime, and one to two hours after meals to ensure that they bolused their insulin correctly. Over time, your fasting, pre-meal, and post-meal blood glucose levels will help you figure out how to adjust your insulin doses.

Continuous glucose monitors (CGM) are particularly useful for tracking changes in glucose levels throughout the day. Some CGM devices also connect with an insulin pump to automatically adjust insulin delivery. After you start a treatment plan, the goal for most people is to spend as much time as possible in their target range. Talk with your healthcare professional about starting CGM and developing glucose targets.

What else do I need to know about taking insulin?

It’s common to experience minimal discomfort from needle injections or skin changes at the insulin injection site. You may also experience side effects of insulin therapy, which can include some weight gain and hypoglycemia. In some people, insulin increases appetite and stops the loss of glucose (and calories) in the urine, which can lead to weight gain. Hypoglycemia can occur if you are not taking the right amount of insulin to cover your carb intake, over-correcting high glucose levels, exercising, or consuming alcohol. Treating hypoglycemia also adds more calories to your daily intake and can further contribute to weight gain. Contact your healthcare professional to adjust your insulin dose if you are experiencing hypoglycemia, or call 911 if you experience more serious side effects, such as severe low blood sugar levels, serious allergic reactions, swelling, or shortness of breath.

Staying in contact with your healthcare team is the best way to make the transition to insulin therapy. Though the first few days or weeks will be challenging, with the right support, you’ll find a diabetes care plan that works for you.

If you were recently diagnosed with type 2 diabetes, check out more resources here.

Source: diabetesdaily.com

The PROTECT Study

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

Let’s face it, there are a lot of research studies out there, and we mean… a lot. But one you should definitely know about is The PROTECT Study. Especially if you or a loved one was recently diagnosed with type 1 diabetes (T1D).

The PROTECT Study aims to understand how the investigational medicine, teplizumab, works in children and young adults who have recently been diagnosed with T1D, as well as assessing if there are any side effects while taking the medication. This treatment is still being evaluated in clinical studies and has not been approved by the FDA for treating T1D. In previous studies of high-risk individuals, teplizumab was shown to delay the onset of T1D an average of nearly 3 years (35 months).

Who Is Eligible for the Study?

This study will include 300 children and adolescents in clinics across the United States, Canada, and Europe that meet the following criteria:

  1. Age 8-17 years old
  2. Diagnosed with T1D in the previous 6 weeks
  3. Positive for 1 of 5 T1D autoantibodies (test to be done as part of the study) 4. Ability to produce a minimum amount of your own insulin (test to be done as part of the study)
  4. Otherwise generally healthy, with no other significant medical conditions, recent or history of infections, or taking medicines that might interfere with teplizumab

If you meet all the criteria, the next step is to visit a study clinic, where the study team will:

  • Discuss the study in more detail and explain what participation would mean for you or your child.
  • Talk through the potential benefits and risks of being involved in the study.
  • Ask questions and carry out medical tests to determine whether you or your child are right for the study and the study is right for you or your child.

If you and/or your child are interested in potentially participating in the PROTECT study, click here to find a study clinic near you.

Before the study begins, you/and your child must agree to and sign an Informed Consent Form which explains the study in detail, any potential risks or benefits of participation, as well as your rights and responsibilities as a participant of the study.

All study-related treatment and care will be provided to eligible patients without charge; however, patients will not receive any compensation for their participation in the study. Patients who decide to participate are able to withdraw from the study at any time for any reason.

Participants do not have to change their primary doctors as the study provides short-term study-related care only. Patients are encouraged to tell their regular doctors about taking part in a clinical research study. Some medicines are prohibited to take while part of the study so a patient’s doctor may want to contact the study physician to request additional information.

How Does It Work?

If you/or your child are selected to be part of this study, you/your child will be placed in one of two groups, either the teplizumab group or the placebo group (meaning you/your child will receive no treatment). Deciding who will be placed in each group is chosen at random by a computerized system, and neither you/your child nor the study doctor will know which treatment group you/your child was placed in. This is done so that results from the different groups can be handled the same way.

Over the duration of the study, you/your child will receive 2 courses of study medicine given by intravenous (IV) infusion. The IV infusion usually lasts about 30 minutes and will be given daily over 12 days on 2 separate occasions, 6 months apart.

The study will last just over a year and a half (the study reports the study will last up to 84 weeks) and require 36 study clinic visits, including the initial screening, treatment courses, and observation periods.

During visits to the study clinic, you/your child will be asked several questions and perform a series of study-related medical tests. These tests are done in order to understand how the treatment is affecting you/your child and how well the body is responding to the medication.

Identifiable information (for instance, name or address) will not be accessible to anyone who is not directly part of this study; additionally, The Sponsor (the company carrying out the study) will not have access to any personal information that is submitted through the study’s website.

Why?

The treatment works by interfering with the cells that destroy the insulin-producing beta cells in the pancreas. If the treatment successfully interferes with these cells (T cells) patients who are taking teplizumab may be able to continue producing their own insulin and reduce their need for insulin injections, have better control over their blood glucose, and experience fewer complications from T1D.

Visit theprotectstudy.com to learn more about PROTECT.

Source: diabetesdaily.com

Why #insulin4all Advocates Targeted Beyond Type 1

Beyond Type 1, the diabetes nonprofit, found itself in hot water recently after the organization sent a letter stating its apparent opposition to LD673, a proposed bill for an insulin safety net program in Maine. The Maine bill is modeled after Minnesota’s popular Alec Smith Insulin Affordability Act, and guarantees that people with diabetes can access inexpensive insulin in an emergency.

The letter stated that LD673 would “create not only administrative burdens to the Maine government and pharmacies in the state, but also unintended additional out-of-pocket expenses to people living with diabetes.” The organization seemed to argue that its own GetInsulin.org program, a partnership with the major insulin manufacturers, rendered further legislation “duplicative” and unnecessary. 

Some diabetes advocates were outraged at Beyond Type 1’s stance, and accused the nonprofit of favoring the big pharmaceutical companies over people with diabetes.

Late last week, the organization appeared to modify its stance with a new letter, this one explicitly supporting Maine’s new bill. Was it all just a misunderstanding, or did rowdy online activism cause Beyond Type 1 to change its tune?

LD673

Alec Smith, the Minnesota bill’s namesake, died of diabetic ketoacidosis (DKA) in 2017, at the age of 26. At the time, he had recently aged out of his parents’ health insurance plan, and the cost of his insulin had skyrocketed to about $1,300 a month, around half of his total earnings. 

Smith’s mother believes that he died because he could not afford to pay for the insulin that he needed to live. She has become a noted insulin activist, and helped turn his death into a major rallying cry for people protesting the nation’s outrageously high insulin prices.

Minnesota signed the Alec Smith Insulin Affordability Act in April 2020, to widespread acclaim in the diabetes community. 

The new bill in Maine, named An Act To Create the Insulin Safety Net Program, would similarly aim to provide cheap, emergency insulin to those with an urgent need. The emergency insulin would carry a maximum cost of $35 for one month’s supply. The bill also mandates standards for the insulin manufacturers’s otherwise voluntary patient assistance programs (PAPs).

The Letter

In the letter that would cause an uproar, Beyond Type 1 never explicitly stated opposition to the new legislation. Whatever its intentions, however, it’s fair to say that the organization strongly implied its opposition.

The letter argues that state-level legislation such as LD673 is no longer necessary, because nationwide circumstances have changed dramatically since the Alec Smith act was passed in Minnesota:

At the time of its passage, GetInsulin.org did not exist, nor did the urgent need programs offered by the manufacturer. Additional insulin copay, cash pay, and patient assistance programs became available after the Minnesota bill became law that insulin manufacturers’ patient assistance programs (PAPs) are enough to fill the gap in assistance, and that the state statute is not needed. 

While insulin is still disgracefully expensive in most of the US, it is true that there are now more avenues for patients in need than there were only a few years ago. Part of that is due to the success of advocacy efforts, such as the one that coalesced around Alec Smith’s death, that turned insulin affordability into a political hot topic. The Covid-19 pandemic has also shined a spotlight on healthcare inequities, pushing the insulin manufacturers to expand their affordability programs in the last year.

The Beyond Type 1 letter also concentrates heavily on extolling the GetInsulin.org website. GetInsulin.org is essentially a user-friendly portal for the PAPs, aggregating the information from all three major insulin manufacturers in a single space. The website was created in partnership with the big pharmaceutical companies and is at least partly funded by them, facts that raise the suspicions of many people with diabetes, who are often inclined to see Big Pharma as an adversary rather than a partner. 

Are PAPs Really Good Enough?

Patient assistance programs can be valuable and even life-saving resources for people struggling to afford insulin. In some cases, PAPs may even provide more generous support for patients in an emergency than that mandated by the Alec Smith Act and Maine’s proposed law. And because these patient support programs have a reputation for being difficult to access and navigate, there’s no reason to doubt that GetInsulin.org provides a valuable public service.

For insulin affordability advocates, that’s not nearly good enough. The Shot, a weekly digest of insulin affordability news, put the case plainly:

While it’s true that patient assistance programs have become more robust … the programs, like Beyond Type 1’s GetInsulin.org, are voluntarily offered by the companies — often at no cost to them as PAPs are generally tax deductible. The Maine bill, like the Minnesota one that precedes it, locks the companies into providing assistance that patients would otherwise have no guarantee will exist tomorrow.

The PAPs are only reliable as long as the manufacturers don’t dilute them in the future (or disband them entirely). Given that many Americans now feel that insulin is practically a byword for medical exploitation, one can hardly be surprised when people with diabetes regard these programs with suspicion.

The big three – Eli Lilly, Novo Nordisk, and Sanofi – are reliable opponents of government efforts to cap insulin prices. And it would seem that PAPs owe their recent expansion more to the immense public relations pressure that manufacturers have lately had to endure than to any one corporation’s sense of generosity or public service.

Experts do agree that insulin manufacturers do not alone bear the blame for high insulin prices. Manufacturers, pharmacy benefit managers, insurance companies, and pharmacies all benefit from high insulin prices, and our byzantine healthcare market incentivizes all of them to push for price increases. Patients can’t easily vote with their wallets, and are therefore left with little recourse to effect meaningful change.

Insulin affordability continues to be a disaster in the diabetes community. Insulin rationing due to high cost is widespread in the United States, a situation that has probably only gotten worse since the dawn of the pandemic and the economic devastation that has followed. 

The upshot of Beyond Type 1’s argument to the Maine legislative committee was that the PAPs, as accessed through GetInsulin.org, are pretty much good enough. If this wasn’t what the organization intended to communicate with its letter, it made a bad mistake – and on an electric issue.

Online Reaction

Insulin access advocates discovered the letter online, and were outraged. Several accused the organization of corruption and betrayal:

Twitter personality Miss Diabetes illustrated a particularly devastating comic, featuring a caricature of Beyond Type 1 co-founder Nick Jonas:

source: @miss__diabetes

A little context: when Beyond Type 1 was founded in 2015, the organization avowed a principled refusal to accept money from the pharmaceutical industry. Things have changed. Now, according to their website, “Beyond Type 1 partners with pharmaceutical companies, including insulin manufacturers, when the organization finds that doing so furthers mission and impact.” 

This isn’t unusual. Most other prominent diabetes nonprofits also accept Big Pharma money (#insulin4all campaigner T1International is one notable exception). Nevertheless, Beyond Type 1’s position on this issue seemed unusual. The American Diabetes Association, for example, took the opposite stance and penned a letter in support of the bill. 

BT1’s About-Face

Despite the controversy, Beyond Type 1 kept silent for weeks, further disappointing some in the diabetes online community.

In response to a request for comment, a Beyond Type 1 spokesman told Diabetes Daily that the original letter was written not to oppose the legislation but “with the intent of providing information to legislators about existing programs and tools for people with diabetes who are insulin-dependent.” 

Additionally, the spokesman said, “Our team has followed the community response closely, and we know some have interpreted our testimony as one of opposition.”

Soon thereafter, the organization sent a new public letter to Maine’s legislative committee, claiming that it did support LD673, and that it always had:

We’re writing today to clarify and state unambiguously that Beyond Type 1 does support the passage of this legislation. This legislation will help individuals in Maine who may be struggling under urgent or ongoing circumstances to access affordable insulin due to high list prices. Our hope is that people with diabetes who need financial assistance to pay for this life-essential drug may find it through existing programs or potentially those created through Maine’s efforts.

After news of the new letter broke, Hilary Koch, a Maine resident and a Policy Manager for T1International, declared victory on Twitter – but also qualified her celebration with a reminder of how much work needs to be done to achieve universal affordable insulin access.

One can only guess as to the effect that Beyond Type 1’s clarification might have the bill’s chances. Lawmakers may well have already been inclined to support the bill. Just last year, Maine passed more sweeping legislation capping insulin costs for those with state-regulated insurance.

 

Source: diabetesdaily.com

Tell the FDA What Delaying Type 1 Diabetes Would Have Meant to You

Imagine a treatment that could delay the progression of type 1 diabetes for years. How much would an extra year (or three or four) of good health have been worth for you or your loved one?

It could become a reality soon. This month, the United States FDA will evaluate what would be the first-ever approved treatment to delay Type 1 diabetes.

And you can help make it come true. In late May, the FDA’s advisory committee will review comments on the matter, including those from the general public. Just a single compelling letter from a person touched by diabetes could make a big difference.

We believe that it would be amazing to have an FDA-approved type 1 diabetes prevention treatment, and we hope that you’ll consider writing a letter of your own. We’ll provide instructions on how to do so at the bottom of this article. But first, a quick review of the proposed treatment and its potential:

Teplizumab

The novel drug is named Teplizumab. It’s been developed by ProventionBio, a biopharmaceutical company wholly dedicated to the prevention of autoimmune diseases.

When given to patients known to carry the antibodies that cause type 1 diabetes, Teplizumab delays the onset of symptoms by an average of nearly three years. And the effect may be even more potent than that. ProventionBio’s most important trial is still ongoing, and even after eight years some participants still appear to be benefiting from the treatment, which was given just once, in a single 2-week course.

Teplizumab was created decades ago, initially as an immunosuppressant, but researchers soon learned that it was especially effective at suppressing the specific T-cells known to attack the pancreatic Beta cells. Apparently, it can suppress that autoimmune attack for quite a long time.

How Teplizumab Might Change Diabetes Care

As of today, there is no validated way to slow type 1 diabetes,. Even if you have utilized antibody testing and know that a family member has an extremely high likelihood of developing type 1 diabetes, there’s little to do but keep watch for the symptoms of hyperglycemia.

But if Teplizumab gets approved, doctors would have a tool to help delay the onset of the disease for the first time.

And as Dr. Jeremy Pettus has explained, antibody screening would likely move into the mainstream. Even if Teplizumab were not indicated, antibody testing could also give many families valuable time to prepare for the progression of type 1 diabetes, months or years to learn about the condition and what to expect. That change could significantly reduce the frequency with which type 1 diabetes is diagnosed in the emergency room, only after the patient has experienced diabetic ketoacidosis (DKA).

How to Tell the FDA Your Story

It couldn’t be easier.

Here is the link to provide a comment for the FDA advisory committee that will rule on Tepluzimab’s application.

  • Write Your Comment
    • You can simply begin typing directly into the form, or you can attach a file.
  • Select a Comment Category
    • From the drop-down menu, select “Individual Consumer.”
  • Provide an Email Address. (Or Don’t).
    • A box allows you to provide an email address to receive confirmation that your comment has been received.
  • Provide Contact Information. (Or Don’t).
    • Decide whether you wish to provide your contact information, or you can file your comment anonymously. Your name will be made public, but none of your other information.

How to Write an Effective Comment

The FDA panel invites commentary from non-experts for a reason: they really want to hear the opinions of regular people. A good letter won’t just vanish into a slush pile.

This treatment is uncharted territory for the FDA, so the real-life experiences of people with diabetes and their caretakers might be especially relevant. While doctors and advocates will attest to the quantifiable medical benefit of delaying type 1, the experts on the advisory committee may not necessarily be able to imagine what those extra years could really mean for patients and their families.

Subjects that may be worth exploring in your comment:

  • The burdens and demands of living with type 1 diabetes, and the difficulty of a life totally reliant on insulin
  • The impact of what a two or three year delay in insulin dependence would mean to patients and families, including:
    • More time to live a normal life
    • More time for a patient and family to learn about the disease, prepare for it, safely manage it
    • Better long-term health, fewer complications
    • Lighter impact on families
  • How increased screening for type 1 diabetes antibodies will improve the standard of care and patient outcomes
  • How important those extra years of insulin-free life might be

Comments do not have to be long to be persuasive, but they should demonstrate a good understanding of the issues.

The government website also has a list of criteria to follow: click “Commenter’s Checklist” above the commenting form to pull up a pop-up window. It’s worth reading through.

For reference, you can look at comments that have already been posted here.

Deadline

Comments posted by the end of May 13 will be provided to committee members before the actual hearing, and will likely have the greatest opportunity to make an impact.

If you’ve missed the May 13 deadline, comments posted by the end of May 26 will still be taken into consideration.

 

Source: diabetesdaily.com

Research Perspectives From a 50-Year Diabetes Medalist

By Chris Stiehl, T1D patient for over 61 years, so far

The Joslin Diabetes Center at Harvard Medical School began in 1893 when its founder, Elliott P. Joslin, MD, first developed his interest in diabetes care. This center was among the first-ever dedicated to the study of diabetes. It is well-known for many discoveries and innovations, including diabetes camps and the introduction of honoring long-term survival for diabetes. For the last 20 years or so, the Joslin Diabetes Center has been studying those who have survived 50 years or more with type 1 diabetes (or T1D). Following the tradition of Dr. Joslin, 50-year survival medals have been awarded to those in the studies since 1972. Dr. George King has been the lead investigator on these studies, having joined the Joslin Diabetes Center in 1981.

Initially, ​the purpose of this study was to document the presence of eye, nerve and kidney complications related to diabetes, as well as to examine DNA and substances in the blood and urine of people with diabetes for 50 years or more. This was to identify factors which may protect from large and small vessel complications, and potentially lead to protection from aging-related diseases. In recent years, funders have investigated related issues and sought ways to extend life with T1D beyond the 50-year Medalist criterion. Indeed, 80-year and 85-year Medalists have been honored at recent meetings.

Over 1,100 Joslin Medalists have been studied so far, including examinations of eyes, skin, kidneys, heart, extremities, nerves, and cognitive functioning. The ensuing results have been enlightening and positive in many ways. For example, Medalists tend to have better bone density than the general population at the same age. There are fewer incidences of classic Alzheimer’s disease symptoms among Joslin 50-year Medalists. Medalists tend to be more outgoing and positive about their future than the general population.


Dr. George King

Many medalists have donated their pancreases for post-mortem study. In all cases, functioning beta cells were found in these pancreases, resulting in occasional “trace” readings with respect to C-peptide even among those who have had T1D 60 years or more.

Data analyses continue for information gained from the studies of Medalist’s blood, retinal images, blood vessel scans, and retinal data. More and more results are being published from the Medalist studies each year.

There will be a Senior T1D session featuring Dr. King at the JDRF Type One Nation Virtual Summit on April 24th, 2021. Several very interesting sessions are scheduled on topics such as COVID and T1D, as well as the mental strain of restrictions of activities and interactions due to COVID. This TON Summit should be as exciting as the one last September, if not more so.

JDRF awarded an Impact Grant to Chris Stiehl to host a senior summit concerning the results of the Medalist studies on the west coast, since most of the Medalist meetings in the past have been held in Boston and many Medalists were unable to attend previous meetings due to health, travel or age limitations. This meeting will be in-person, at the LAX Marriott on August 15th, providing it will be relatively safe to meet by then. You must register in advance for this Senior Summit for Long-Term T1D. The program is still being constructed, but Dr. King has indicated his desire to participate, as well as Aaron Kowalski, CEO of JDRF.

Although the data concerning the relationship between COVID and long-term T1D is sparse, at best, at this point, it is known that transplant patients and those with compromised immune systems are at greater risk for more severe cases. We plan to have a speaker on that subject, as well as subjects requested by Medalists for the Senior Summit, such as research on new devices and tools, so-called “smart” insulins, artificial pancreases, better metrics (beyond A1c), looping and others.

Source: diabetesdaily.com

Is COVID-19 Causing a Diabetes Epidemic?

As the COVID-19 pandemic rages on into its second year, researchers have discovered a new, disturbing trend: there has been a statistically significant rise in both type 1 and type 2 diabetes diagnoses observed in patients after an experience of severe COVID-19. Even more disturbing is that nearly 14.4% of people who are hospitalized with COVID-19 go on to have either a type 1 or type 2 diabetes diagnosis, according to a November 2020 study that followed nearly 4,000 patients with severe COVID-19 infections.

It’s too early to tell if these forms of diabetes are permanent or temporary, but the correlation between severe COVID-19 cases and the development of diabetes is strong.

It’s well known that viruses can sometimes trigger diabetes. When someone contracts a virus, the immune system starts mounting a defense to fight it, mostly with T-cells. Sometimes the body will overreact, and start destroying its own pancreatic beta cells, the result being type 1 diabetes.

Scientists believe the same thing may be happening in the case of COVID-19 patients. Traditionally, COVID-19 has been an attack on the lungs, but a host of other issues and complications have come to light from sufferers of “long-haul COVID”: neurological disorders, blood clots, kidney failure, heart damage, and now many believe an epidemic of both type 1 and type 2 diabetes diagnoses may soon be added to the list.

The association between other coronaviruses and the development of diabetes has been made in the past during the SARS outbreak as well.

After the 2003 SARS pandemic, Chinese researchers tracked 39 patients who had developed high blood sugar levels characteristic of a diabetes diagnosis, within days of hospitalization with the disease. For all but six, blood sugar levels had returned to normal by their hospital discharge, and only two still had diabetes after two years.

This isn’t entirely new, either. Doctors in Wuhan, China reported a link between COVID-19 and elevated blood sugar levels back in April 2020. Italian scientists also looked into whether higher blood sugar levels could lead to a diagnosis of diabetes. That study, from May 2020, admitted more research needed to be conducted before a conclusion was reached.

Because COVID-19 is a global pandemic and the link to new diabetes cases has been observed in multiple countries, researchers globally are collecting data points about those patients in a registry called CoviDIAB.

Scientists do not know whether COVID-19 might exacerbate already developing issues or actually cause them; some believe it’s both. Many people who have had COVID-19 and have gone on to develop type 2 diabetes already have existing risk factors, such as obesity and a family history of the disease. Perhaps the increased medical attention sought out by people suffering from COVID-19 has detected the disease early, when a diagnosis was inevitable later on down the line anyway. Some medical experts believe that more people are getting medical attention than ever before, being closely monitored by experts in the field, and are unveiling underlying issues that may have been there all along.

Another theory is that elevated blood sugar levels also are common among those taking dexamethasone, a steroid that is a common treatment for COVID-19. Steroid-induced diabetes is rare, but not unheard of, and may trigger diabetes in people who have no known health risks for the disease.

“Researchers are working like crazy to see if COVID attacks the beta cells of the pancreas, which makes insulin,” pediatrician Dr. Dyan Hes said. “Some studies feel that they do, but other studies have been repeatedly saying it is not attracted to the beta-cell.”

How exactly the two conditions are connected isn’t quite clear yet, but a prominent theory is that the COVID-19 virus destroys or alters insulin-producing beta cells in the pancreas possibly by binding to ACE2 receptors, according to a short letter published in the New England Journal of Medicine.

Whatever the association is, researchers from the journal of Diabetes, Obesity, and Metabolism say a direct effect of COVID-19 on the development of diabetes, “should be considered.”

Francesco Rubino, a diabetes surgery professor at King’s College London, is convinced there is a connection between the two conditions and has been tracking and studying the phenomenon since early last year. “We really need to dig deeper, but it sounds like we do have a real problem with COVID and diabetes.”

Additionally, Rubino thinks the type of diabetes being developed as a result of COVID-19 may be a hybrid form, something of a cross between type 1 and type 2. His findings show that the symptoms in these patients have some characteristics of each form of diabetes, which he finds concerning.

Researchers are also now seeing a rise in type 2 diabetes diagnoses in children who have had asymptomatic COVID-19, which is even more troubling, as many schools are back in session, many public places do not require masks on children, and the tipping point of a diabetes epidemic may rest solely on the shoulders of our youngest, most vulnerable citizens.

This can also complicate a few things for people: firstly, that neither the Pfizer-BioNtech nor the Moderna COVID-19 vaccines are approved for children, and secondly, that type 1 diabetes is not being prioritized on the Centers for Disease Control and Prevention’s list for vaccine dissemination. States are able to follow their guidance or dismiss it out of hand, but federally, there is no coordination to prioritize the population.

With nearly 10% (34 million people) of the United States already affected by diabetes, and another 100 million living with prediabetes, the tidal wave of COVID-19 cases could very well send our country into catastrophe fighting two disasters at once: both uncontrolled community spread of COVID-19 along with a (COVID-triggered) explosion of new diabetes diagnoses, especially in children. This would not only send our country into panic mode but could also completely overwhelm our already fragile health care system that everyone is so heavily relying on.

Scientists are rushing to find the exact connection between severe COVID-19 cases and new diagnoses of diabetes, but between diabetes being a major risk factor for death in COVID-19 cases (nearly 40% of COVID-19 deaths have been in patients with diabetes), along with the increased risk of developing diabetes from a severe bout of COVID-19, one thing is for sure: we need to find the connection and fast and get the diabetes community and those at risk for diabetes vaccinated as quickly as possible. We don’t have time to waste.

 

Source: diabetesdaily.com

New Therapy to Treat Type 1 Diabetes Rolls Out Clinical Trial

Type 1 diabetes is an autoimmune condition whereby the person’s own immune system attacks the pancreatic cells that produce insulin. Insulin signals for glucose uptake into cells, a carefully regulated and important process, that when disrupted, can lead to an array of health complications, and without treatment, results in death. Many advances in the care of type 1 diabetes have been made in the last century; however, there is no cure for the condition, and patients rely on frequent blood glucose monitoring and insulin injection or infusion therapy to survive.

We have been closely following the work of Dr. Bart Roep and his colleagues at the City of Hope over the last several years. We first spoke to him at the 79th American Diabetes Association (ADA) Scientific Sessions in 2019.

“Dr. Roep has dedicated his professional life to trying to cure type 1 diabetes. Over an almost 30-year career, he has earned numerous prestigious awards and is perhaps most well-known for his work discovering how T-cells recognize specific antigens on beta cells in the context of type 1 diabetes pathogenesis. Currently, he is Chan Soon-Shiong Shapiro Distinguished Chair in Diabetes and the founding chair of the Department of Diabetes Immunology within City of Hope’s Diabetes & Metabolism Research Institute. Dr. Roep is also the director of the Wanek Family Project for Type 1 Diabetes.”

The immune system coordinates defenses against pathogens (like viruses and bacteria) via intricate cross-talk between different immune cells in the body. It is also able to recognize the host (self-tolerance) and under normal circumstances, should not attempt to destroy the person’s own cells (with the exception of special circumstances, like cancerous cells, for instance).

Photo by iStock

For the treatment of autoimmune conditions, like type 1 diabetes, much research is ongoing in an effort to “re-write” some of the “programming” and cellular cross-talk thought to be responsible for autoimmune attack. The “inverse vaccine” for the treatment of type 1 diabetes attempts to do just that in the following process:

  1. Immune cells are taken from patients and “re-educated” in the test tube to improve self- tolerance
  2. These cells are injected back into the patient, in hopes that they will not longer drive autoimmune attack, but rather “educate” the immune system to tolerate the person’s own beta cells

Last year, we reported that the initial safety and tolerability studies appeared promising.

Now, additional clinical trials are poised to begin:

“The vaccine is made using one’s own immune cells (dendritic cells) and a beta cell protein. The vaccine may teach the immune system to stop attacking the beta cells, which may help the beta cells recover and make enough insulin to control blood sugar levels. The vaccine may also help reduce future type 1 diabetes related complications.”

It is a very exciting time for type 1 diabetes as we move from just treating the symptoms to actually trying to stop the disease,” Roep remarked in a recent press release.

What are your thoughts on this research? Would you participate in the trial?

Source: diabetesdaily.com

What I Wish People Knew About Type 3C Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Jen M.

What do you think of when you think of a diabetes diagnosis story? It could be a type 1 diagnosis story when someone experiences diabetic ketoacidosis (DKA) symptoms and gets admitted to the hospital. It could be a type 2 diagnosis story of someone diagnosed through blood work at a routine doctor’s appointment. My story is a little bit different.

I am a type 3c diabetic. Most people I converse with have never heard of my type, and that’s okay. Since my diagnosis, I have found a passion for educating the general public and the diabetes community about type 3c and what life is like living without a pancreas.

You read that right, I don’t have a pancreas at all!

In December 2015, I woke up with severe abdominal pain. At first I thought it may have been a stomach ache and tried to rest. As the day went on, the pain continued to get more severe. And when I say severe, I mean the worst pain I have ever felt. It is difficult to even put the experience into words. I was visiting my parents for Christmas and my mom drove me to the local emergency room. What I thought would be a quick trip turned into a 4 week stay. I was diagnosed with pancreatitis and they spent those weeks trying to get the pain under control and figure out why this was happening.

The journey to figure out why I, a 25 year old with no family history and no alcohol use, was having repeated episodes of pancreatitis took about 7 months. I was in and out of the hospital every few weeks with recurring flares. I’ll spare all of the details, but it was finally determined that I had two genetic mutations in the SPINK gene and the CFTR gene. The combination of these gene mutations explained why I had chronic pancreatitis. I consulted with several doctors at different hospitals and they all agreed that the best plan of action to improve my quality of life would be to perform a total pancreatectomy.

I had my surgery on February 2, 2017, a little over 1 year after my first diagnosed pancreatitis flare. The surgery is called a total pancreatectomy with autologous islet cell transplant (TPAIT). The surgeon removed my pancreas, spleen, gall bladder, duodenum, and lower portion of my stomach. As people with diabetes know, insulin is incredibly important, so in an ideal case, the surgeon would remove the pancreas and isolate the islet cells from the pancreas and transplant them into my liver. According to my surgeon, 36.9% of patients in his research studies became independent from insulin after islet transplant. Hearing this before surgery made me optimistic, however there was extensive damage and calcification to my pancreas when they removed it and the islet cell yield made my transplant unsuccessful. I have been fully insulin-dependent since the second my pancreas was removed from my body.

So I want to explain briefly exactly what type 3c diabetes is. It is referred to as “pancreatogenic” diabetes, which means diabetes that results from a pancreatic condition. Examples of pancreatic conditions could be exocrine insufficiency, pancreatitis, cystic fibrosis, pancreatic cancer, or partial or total pancreatectomy. As you can imagine, it is a complex condition that is not widely researched or even recognized by many medical professionals. After asking my close TPAIT friends, most of us don’t even have the diagnosis of type 3c in our charts, because insurance won’t cover devices and supplies under that diagnosis code. Most of us have type 1 diabetes as our chart diagnosis, an entirely different autoimmune condition.

Type 3c may have similarities to type 1 due to the fact that both conditions require insulin, but that’s the only similarity. There are a few big differences to note. With TPAIT related type 3c specifically, since our pancreases are completely removed we have no alpha cells. In the most simplified definition, alpha cells secrete glucagon, which works opposite to insulin by increasing the amount of glucose in the blood. Without these alpha cells we are at risk for “brittle” diabetes and large swings in our blood sugar. Another big difference between TPAIT type 3c and other types is the malabsorption issues that we can face after surgery. Since we have large portions of our digestive systems removed, including the lower stomach and duodenum, the way our food and nutrients are digested may impact our insulin needs.

The pancreas has both endocrine and exocrine function. The endocrine function is secreting hormones, such as insulin, into the blood and the exocrine function is secreting digestive enzymes, bicarbonate, and water into the duodenum to begin the digestion of food. Most type 3c diabetics require prescription digestive enzymes when eating. Pancreatic conditions typically affect the exocrine function of the pancreas so we have to supplement these enzymes to aid with digestion. Without the proper dosage and timing when taking the capsules, we cannot properly digest food and can face serious gastrointestinal complications and malabsorption of nutrients.

When it comes to the diabetes community, there is not a large representation of people with type 3c. Type 3c is rare and often misdiagnosed. When someone is suffering from a pancreatic condition and they develop diabetes as a result, doctors often just call it type 2. I imagine this is due to a lack of information, research on type 3c, and insurance coverage.

There are a few things that I wish people knew when it comes to type 3c. The most important to me is that, when you have diabetes alone, your pancreas isn’t “dead”. The pancreas is often referred to as dead or useless in the diabetes community. Using these terms is false and misleading.

Endocrine cells make up 5% of the overall pancreas. Diabetes is an endocrine disease, and diabetes doesn’t necessarily mean you have zero pancreatic endocrine function. Many people with type 1 diabetes may have functioning alpha cells (producing glucagon) because the initial autoimmune attack is limited to the beta cells of the pancreas. Exocrine cells make up the other 95% of the pancreas, and for people with type 1 diabetes and no other pancreatic condition, this function is still working smoothly. Both endocrine and exocrine functions are vital in their own way to the body. Your pancreas could be considered “useless” if you are missing both of those functions. In any other context, it spreads misinformation.

I feel that most people with diabetes, of any type, want the general public to better understand our condition. We want them to understand the differences between the types. We want them to understand what causes or doesn’t cause diabetes. If that’s the case, why would we want to give them misinformation in the process? It’s not helping society understand diabetes. It’s not helping people with diabetes to understand diabetes. I honestly think that some people who say their pancreas is useless believe it to be true, because it’s what they’ve heard others say. And I know the diabetes community can do better to help educate within our community and also to the general public. I know the type 3c community would appreciate being recognized and validated. We haven’t had many opportunities to have our voices heard from large diabetes organizations or within the community. I know I will never stop using my voice to advocate for us. I can only hope to have the support of the diabetes community behind us.

Source: diabetesdaily.com

Top Ten Myths About Peer Programs

I have been living with type 1 diabetes for almost 30 years (this October 19th marks my 30th diaversary) and I’ve worked in the diabetes industry for over 20 years. I’ve primarily focused my career on community education and peer programs and have seen time and time again how beneficial they are. But I’ve also heard, for a variety of reasons, that many are reluctant to take part in a community or join a group. And we think it might be due to some misconceptions or myths about peer programs. Here’s our list of the top ten myths about peer mentorship!

Myth #1: My healthcare team is the most important part of my diabetes management. 

YOU are the most essential part of your diabetes management. You manage your diabetes for 525,600 minutes per year. While your healthcare team is vital, research suggests that a peer community is just as important as an educated healthcare team.

Fisher et al. conducted a systematic review that analyzed data from peer support for diabetes management studies and concluded that,

“across diverse settings, including under-resourced countries and health care systems, PS [peer support] is effective in improving complex health behaviors in disease prevention and management including in diabetes.” 1

If you visit your diabetes healthcare provider (HCP) once per month for 20 mins, that’s only 240 minutes per year. Yah, it’s all you. Give yourself a high five – this is hard work! Regardless of the type of program, a peer community can help you in so many different ways. Emotional support, stress relief, guidance, learn to advocate for yourself, exposure to various management tools, techniques, devices, and medications, and the list goes on! Being around like-minded people going through the same thing – just.makes.sense.

Myth #2: I don’t need it – my diabetes is well managed. 

That’s awesome and we’re excited to hear that! Over the years, I’ve often heard the comment, “I didn’t know I needed it until I was there.” A peer program, whether that be an event or group, can fill a gap you didn’t know existed.

We can learn things from our peers that we just can’t from our team of doctors and nurses. For example, you might not be aware of specific tips and tricks that people with diabetes use concerning their devices, medications, insurance plans, or assistance programs. Peer groups can also help us fine-tune our diabetes management in different ways than our healthcare teams can. They are there when the going gets tough, and you need someone who “gets it.”

A good friend of mine, doing well and happily managing his diabetes, had no desire to use CGM (continuous glucose monitoring) technology. He attended an event and saw his friends using one and realized he could fine-tune things even more. It was because he saw others using it and was able to speak to them about their experiences; he decided to give one a try. Six years later, he’s still using one and doing better than ever.

Myth #3: I only need a peer community or mentor when first diagnosed.

Having someone walk you through what to expect or be there with you as learn can be impactful. But diabetes is lifelong, and that means it can change over time. Life ebbs and flows, and so can our management and ability to focus on it. Having people who “get it” and you can turn to can be beneficial at any stage!

Myth #4: A peer program is all about complaining. I don’t want to be part of a pity fest. 

We hope not! I know in my peer group I can post funny anecdotes (those things that only people living with diabetes would get a laugh out of), ask questions, figure out what to make for dinner, but yes, also vent if I need to.

The way I’ve managed my diabetes has changed over time throughout my life, and my peer group has been so helpful and empowering along the way. We hope our peer mentorship program will be a source of positive relationships and interactions.

Myth #5: My diabetes will be reversed if I join a mentorship program.

We wish this were always true. According to a small study 3, people diagnosed less than four years ago with type 2 diabetes found that drastic calorie reduction normalized blood glucose and insulin resistance. Thus, stopping diabetes in its tracks. However, this study did not include anyone using medication and had strict exclusion criteria. Therefore this result may not be true for everyone. Alongside lifestyle changes (nutrition, exercise, sleep, and stress reduction), sometimes medication is needed to help the body work more effectively and efficiently. Joining a program or group can help you find the resources and support you need to make those necessary changes and stay the course.

Myth #6: I will be shamed or judged for my choices or medications I’m using or not using.

We’re sorry to hear if that’s the experience you’ve had previously! For many communities and programs (including Facebook groups), most have guidelines each person must adhere to in order to participate. In our forum, there are Community Guidelines (rules for posting). Our Peer Mentorship Program encourages empowering language and not “shoulding” each other (“You should or shouldn’t do this.”) Instead, we speak from our own experiences, what has and has not worked. Each person is on their journey, and it takes time to reach your goals. What works for one person doesn’t necessarily mean it will work for you (diabetes would be SO much easier if we could all do the exact same thing and get the same results!) Most times, you’ll need to experiment to find the combination of things that work for you, whatever those things may be. One step forward at a time.

Myth #7: It’s too much time. I don’t want to spend more time talking about diabetes.

via GIPHY

We totally get it! Joining any program involves a time commitment, but what you put in, you get out. We know that talking about our experiences creates a sense of connection and belonging, which can help us cope during difficult times. It can also be more efficient to talk about options and choices with real-life users before starting something new or making changes. Sharing what is going on, asking questions, learning from other’s challenges, and helping others can pay you back in dividends.

Myth #8: These types of programs don’t work.

We hope they do, and research shows they do work! Peer programs are an option or piece of a larger puzzle. It’s one area that can help you manage your diabetes, but you have to show up and participate. Specifically, in the Diabetes Daily peer mentorship program, we ask that you set some goals to work towards them and use the community for help. You create the goals, and they can be as small or grand as you like.

See what our previous program participants had to say:

“I really enjoyed my time chatting with others and seeing how others managed their diabetes. It [the program] gave different perspectives but I always felt very supported. I felt I also helped my mentor with their diabetes.” 

 

“I learned so much from my mentor! He had tons of knowledge and I changed a lot of my lifestyle based on information from my mentor and the group.” 

 

“I learned about diabetes technology that I would have not known about.” 

 

“I was very introverted and not ready to accept my diabetes. This program made me realize how important it is and that I can’t ignore it.” 

Myth #9: All of these programs are the same.

Every program is different and unique. Take Weight Watchers; for example, it previously focused on in-person group weigh-ins and meetings. Now, the program uses an app and online support to help members reach their weight loss goals. Alcoholics Anonymous (AA) is composed of in-person group meetings and a one-on-one sponsor relationship. Cancer support groups often meet in person with a social worker, mental health professional, or facilitator to discuss their experiences, feelings, and emotions. Diabetes Daily has an anonymous online forum where you can freely post your questions and answer other people’s. The re-launch of our mentorship program is more similar to AA, where you have a partner to connect one-on-one with and group sessions where you can learn from others’ experiences and stories.

Myth #10: It’s a diabetes education program.

Yes and no. It’s what we call peer support and peer education. By listening to others’ successes and their challenges, you learn about real-life experiences. For example, it’s invaluable to hear about a medication’s common side effects and address these with your doctor before trying something new. Not everyone will react the same, but we know sharing your tips and tricks can help others. Continuing to work with your healthcare team is vital as they are the ones who will address medications and any changes to those.

To learn more or join our peer mentorship for people living with type 2 diabetes, head to our Mentorship page. Registration closes August 28th, 2020, and the program begins September 1st. We hope you’ll join us!

References

1. Fisher, EB, Boothroyd, RI, Elstad, EA; “Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews” (2017) Clinical Diabetes and Endocrinology DOI: 10.1186/s40842-017-0042-3  Accessed: 8/21/2020 https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-017-0042-3  

2. Warshaw H and Edelman D; “Building Bridges Through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People With Diabetes, Caregivers, and Health Care Providers” (2018) Journal of Diabetes Science and Technology DOI: 10.1177/1932296818807689 Accessed: 8/21/2020 https://journals.sagepub.com/doi/full/10.1177/1932296818807689#

3. Lim, E.L., Hollingsworth, K.G., Aribisala, B.S. et al. “Reversal of type 2 diabetes: normalisation of beta cell function in association with decreased pancreas and liver triacylglycerol” (2011) Diabetologia 54 DOI: 10.1007/s00125-011-2204-7 Accessed: 8/21/2020  https://link.springer.com/article/10.1007/s00125-011-2204-7#citeas

Source: diabetesdaily.com

Teenage Boy Receives Novel Stem Cell Therapy

Editor’s note: This article was updated on 7/31/2020 for accuracy regarding the specific stem cell treatment used. 

A lot of research is ongoing to develop novel therapies for type 1 diabetes. Many investigators are now focusing on the potential of various stem cells therapies. One approach involves using mesenchymal stromal cells (MSCs) (which can be obtained from the umbilical cord) and directly injecting them into the pancreas in an effort to induce insulin production. These kinds of treatments are still in the early experimental stages, with some clinical trials ongoing.

Seeking an Experimental Treatment Abroad

Just last week, Vera and her son Aaron set out to have the procedure done at Cryovida in Mexico. After having a difficult time managing his diabetes, Vera vowed to do whatever it took to lessen the burden for both her son and herself. Since Vera first posted about their upcoming journey, the diabetes online community became intrigued. Vera even started a Facebook page where people could learn and ask their questions. I thought it would be good to hear from Vera about the whole experience and how Aaron is doing now.

At what age was Aaron diagnosed with type 1 diabetes?

He [had] just turned 15.

How have Aaron and your family been managing with his diabetes leading up to this life-changing procedure?

Probably the hardest time in our lives. In the honeymoon stage, my son’s attitude was almost impossible to deal with. As he got used to monitoring and stabilizing, he improved. My son is on the spectrum, so he was always difficult. He would forget to take his long-lasting insulin, not cover for the junk he would eat, and his sugars were almost always over 500. It was living in hell. Six months ago, my son came to live with me in Mexico (he was living with my mom in NJ, because he wanted to finish school, and we moved to Mazatlan, Mexico 3 years ago). When he came his blood work was so bad that the doctor didn’t know how he was walking. His A1C was over 20, his triglycerides were over 700! The doctor immediately changed his insulin. He said they had him on such a low dose, no wonder we could never control it, and put him on cholesterol meds, which my son never took. Just two months later my son’s triglycerides went down to normal (and he never took a single med for it; It is just the fresh food here), and his A1C was down to 18. By the time we went for the procedure, his A1C was down to 15.9. My son still doesn’t listen, and eats tons of junk, does not cover for it. I have to be on top of him 24/7 to check his blood and take his insulin. So, if this works I may retire from my position of a drill sergeant.

What prompted you to start looking for possible cures or treatments? How did you hear about Stem Cell Educator Therapy?

My son [was] almost dying, and his dream to go into the military was taken away from him. My husband is a retired Vet, his father is a retired Vet, my grandfather was a retired Vet. We are a military family. This may give him the opportunity to serve, which is all he wants. I heard about it from research. I started googling diabetes cures and ran across different articles for stem cells. I always read everything, I rarely follow what is being pushed by news or politicians. I sit and read.

What are the benefits of this procedure for a patient living with type 1 diabetes? And what are the risks involved?

Well, ultimately a full cure, but for those that do not get cured, it lowers their need for insulin substantially. Risks… honestly not much [from] the procedure itself, but the normal risk, possible bleeding, pain in the area. Long term, diabetes can come back. Scientists still have not figured out how to protect the new beta cells from being attacked again by your immune system. For me, that is a risk I can live with. Even if he gets a year diabetes-free, I would pay and do the procedure again. The longest known case has been diabetes-free for 3 years now.  I am hoping [the]  next huge development will be scientists figuring out how to protect the new beta cells.

How did Aaron feel about it? Was he nervous? Excited? Or a little bit of both?

OMG, he was a mess. At first, he was stoked about it. He couldn’t wait. Then came time for the procedure, and he was like, “nope”. He was sitting in the huge cat scan room where they were doing the procedure saying “no, I don’t want it”. I had to tell the anesthesiologist to get him sedated ASAP, or my son was about to run out of the hospital in the gown down the street!

How was it dealing with Renu and Cryovida? How were the doctors? Were they able to speak English so they could communicate with Aaron?

First, I am lucky enough to live in Mexico, but I speak horribly. We were able to set up the full thing in one week. The reps did everything. They spoke perfect English. Once at the hospital, the doctors spoke English, Went through every piece of paper I signed, explained everything to me and my son. Let my husband and I be in the room until the procedure started (even though the hospital had a rule; one person per family due to COVID). After the procedure, all the doctors came in, explained everything. Gave me all the paperwork. The reps from Renu came with us from Mazatlan to Guadalajara, a six-hour drive, and stayed the whole full three days with us to make sure everything was okay. It was an overall great experience.

Image credit: Vera Mazatlan

How long did the procedure take and generally speaking, how is it done?

They were done in an hour, but most of the time was prep. The actual procedure takes 10 minutes. They make a hole in the femoral artery and lead a scope into the pancreas, where they then inject the cells.

How does Aaron feel now after the procedure? Did he have a lot of pain right after?

He feels amazing. The first thing he noticed is that his eyesight was no longer blurry. He was only in pain on the first day. Now he is back to his crazy self. He also has tons of energy. He was so sluggish before. That is the biggest change.

Have you noticed any changes to his blood sugars yet? Do you notice any fewer peaks and valleys? Has he tried experimenting with new foods or is this too soon?

When can he expect to see some results? I have noticed his blood sugar is lower, even after he eats junks. He is 17, controlling him to eat right is IMPOSSIBLE! They said I should start seeing a real difference in about 45 days to 6 months. Depends on each person.

Now that is it over and behind Aaron, how is his perspective looking forward to living with this disease? Is he glad he did it? I bet he can’t wait to see the results!

He is beyond grateful to possibly be given a chance to be diabetes-free. He still wants to go into the military. To him, this is a gift he would never get. I made him a promise [that]  if there was a way to cure him, I would pay any amount of money, and go anywhere to do it. I have fulfilled my promise.

What would you share with our community who has been so intrigued by your story, any advice you could share having gone through this with your own child?

Never give up hope, and never take no for an answer. If the doctor is not giving you the answer you want, get a second, third, fourth, doesn’t matter how many opinions. There is always hope and new science out there. Yes, it can be expensive, but ask yourself, what is your child’s health worth to you? Also, READ EVERYTHING. Science changes monthly. Keep reading, keep joining groups, keep reaching out. Forget what you hear on the news and from politicians, you are the advocate for your child. Go against the grain, and be a trendsetter. Those are the people that make a difference.

Vera, thank you so much for sharing both you and your son’s experience. We wish Aaron nothing but health and happiness and we will continue to follow his journey!

What are your thoughts on this kind of experimental treatment? Is this something you would consider? Share and comment below!

Source: diabetesdaily.com

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