Life Before and After an Islet Cell Transplant

islet cell

Words like “The Edmonton Protocol” and “islet cell transplants” are ones that people with type 1 diabetes have read with great enthusiasm over the years.  When news of the Edmonton Protocol was first released, many wondered when they would be able to sign up to be cured.  In the summer of 2007, I learned that this was a therapy and not a cure.

What is an islet cell transplant?

An islet cell transplant requires the isolation of islet cells from a donor pancreas.  Approximately 500,000 cells are isolated from one donor.  They are then transplanted into a waiting recipient. Each recipient requires at least 300,000 cells and will need a second transplant within a few months of the first to successfully reduce or remove the need for injected insulin.

One Step Up From a Lab Rat

One step up from a lab rat

I was recently given the opportunity to learn a lot more about the Edmonton Protocol and the people who have received islet cell transplants.  Donna Marcelissen asked me if I would be interested in reading her book “One Step Up From a Lab Rat”.  It was a self-published book about going through the transplant process, what led her there and what happened after. I jumped at the chance to learn more and was amazed by what I read.

The experience of an islet cell transplant recipient

Donna had had type 1 diabetes for over 20 years before getting her first islet cell transplant. In her book, she explains that her successful business had to be scaled back over time because of severe neuropathies of the stomach, chest, hands, and legs.  She was using injected Gravol daily simply to be able to function.  She also was going blind despite 23 eye surgeries and was hypoglycemic unaware.  Donna stated that “most people believe that insulin and diet are all that a diabetic needs to follow in order to live a healthy, complication-free life….however, this is a disease and how the body reacts to it is not predictable.” My heart broke.

Even though Donna was experiencing incredibly debilitating complications because of type 1 diabetes, she was cautious about subjecting herself to the Edmonton Protocol. She was one of the very first thirty-five people to receive this treatment.  She knew very little about the process and there was no one to ask if the challenges would be worth the results. As Donna filled out forms and subjected herself to further testing to see if she was an eligible candidate for the process she began to fear not being able to have the transplant.

 “This transplant would alleviate the guilt of feeling there should be something more I could do.  We could begin to make future plans.”

The financial burden of islet cell transplants

Donna Marcelissen lived in Ottawa and had to relocate to Edmonton for at least one year.  They had to pay out of pocket for a second home and all of its expenses in Alberta while continuing to maintain their family residence in Ontario. Donna and her husband were also responsible to cover the $3000 airfare to fly at a minute’s notice to Edmonton to have the first procedure done.  There were also drugs that would cost her over $35,000 per year that had to be covered. 

Between her income and her husband’s, the Marcelissens were able to cover the expenses associated with Donna’s transplant but in her book she brings up two very valid points… “Should money be the deciding factor as to whether someone should live or die?” and what were the cumulative costs of all of the complications she was experiencing? Surely the cost of procedures, medications as well as a significant reduction in her taxable income were all far greater than the cost of covering islet transplant therapy.  

Donna tells me that the procedure itself is no longer covered by provincial governments. “Capital Health covers their constituents.  The government of Ontario refuses to cover it.  It is only through applications and special access that the possibility transplantation exists for individuals.  The costs of medications, staying in Edmonton while waiting for the procedure, and traveling (by air) are not covered, however.”

Donna Marcelissen’s story is amazing

As you read Donna’s story you struck by many things.  First is her strength and courage.  The pain and suffering that she experienced both before and after her transplants will bring you to tears. 

As Donna writes, you are compelled to hang on every word. She describes her first breakfast reading after the procedure in exquisite detail. 

Her pre-breakfast reading was an incredible 5.2mmol (94mgdl) and she treated herself to a glass of cranberry juice.  This was a luxury she hadn’t afforded herself in 21 years because of the high fructose and glucose content. “It was sumptuous, with a fragrant, ripe sweetness that left a tangy aftertaste to linger on my tongue.  Flowers in my mouth…”

By Donna’s second transplant, she enjoyed a longer period of time completely insulin freedom.  In the book One Step Up From a Lab Rat, she also shared the incredibly emotional experience of having some of her vision restored as her blood glucose levels stabilize into a normal range.  Her descriptions made you part of the experience and you could feel her joy.

Despite the highs and lows, Donna states that transplant recipients feel an obligation to their donors to do the very best with what they have been given…a gift of life. With this book and through her subsequent work with groups like Diabetes Canada, the Juvenile Diabetes Research Foundation and  DRIFCAN, Donna has done amazing things with her gift of a new life. 

Life after the Edmonton Protocol

Donna Marcelissen has had three islet cell transplants to date.  The option for another “top-up” is still available to her but she told me that she isn’t certain that she is ready.  “I have had my immune system greatly suppressed (Leukopaenic ) for each of the three transplants – I’m not certain I want to undergo that again. But never say never.  However, being able to say that I feel like I have an option is a good indicator that I am doing so much better. I have had a reprieve three times from this horrid disease.   I do deal with some stressful complications from long term immune suppression medication use – but I try to put it into perspective.  Issues arise, I seek medical help, learn to cope and work on moving forward.”

Final Thoughts on One Step Up From A Lab Rat

One Step Up From a Lab Rat is an incredible read.  You will find yourself alternating between wanting to turn the page to see how she is doing and having to step away because of the sheer depth of emotions that you are feeling. Donna reminds us that “Insulin is not a cure. It does not even sustain some.  Complications are not just from neglect but they can be the nature of the disease.

To purchase your copy of One Step Up from a Lab Rat, click on the button below. All proceeds from the sale of this book go to the DRIFCan to continue the work of the Edmonton Protocol.

For more great reads from people living with diabetes, check out our diabetes books page.

How to Manage Type 1 Diabetes When you are sick

managing type 1 diabetes when sick

No one likes to get sick.  We take our vitamins, use proper handwashing techniques and get our flu shots all to avoid getting any of the colds and flu bugs lurking around.  Despite our best efforts, many of us will still find ourselves under the weather. That is why it is important to keep your sick day protocol nearby so that you know how to manage your type 1 diabetes when you are sick.

When you were first diagnosed with diabetes, your clinic or doctor probably gave you a huge packet of information.  Besides telling you about high and low symptoms and when to take your insulin, there was most likely also a detailed sheet on what to do when you get sick. 

Click below to get our sick day protocol ebooklet.

Here are some of the things that you need to remember if you are sick and have type 1 diabetes.

Take your insulin

take your insulin when sick and have diabetes

If you are sick and even vomiting, it is important to continue to inject your insulin. As your body works to fight the bug, your blood glucose levels will often run higher than normal and insulin will be vital to keep your readings in check. If you are on an insulin pump, you may have to temporarily increase your basal rates.

If you are unsure of how much insulin to take or how much of an increase you need, remember to check the sick day protocol prescribed by your diabetes team or contact your doctor for specific instructions.

Try to stick to your meal plan or get some solid foods into your system

If you are on a specific meal plan, try to stick to you if you can.  If you are having trouble eating, try bland foods like unsweetened apple sauce, regular gelatin, toast, or crackers.  If you can’t stomach bland foods, try clear soup or bouillon that contain salt.

If vomiting continues for any amount of time, contact your doctor to see if he/she would advise the use of products such as Gravol or Zolfran. They may be able to reduce nausea.

Stay hydrated

stay hydrated when you have diabetes

Staying hydrated is a huge thing for anyone but especially for those living with diabetes. Try to drink 6-8 ounces of fluids every hour.  Switch back and forth between drinks that contain sugar and drinks that do not. For example, for one hour, drink regular fruit juice and soft drinks. The next hour, drink sugar-free soft drinks, tea, or water.

If you are unable to keep liquids down, contact your doctor or head to the nearest emergency rooms for IV fluids.

How to handle low blood glucose levels when you are nauseous

Rescue doses of glucagon can be used to help bring back up blood glucose levels when a person with diabetes is unable to consume or absorb carbohydrate because of nausea, vomiting or diarrhea and blood glucose below 4 mmol/L or 72mgdL. 

Contact your doctor or diabetes team to see if they recommend the use of rescue glucagon when ill.

How to use rescue doses of glucagon

rescue glucagon guidelines

According to the instructions from the ADA, you should draw up your mixed glucagon in a standard U-100 insulin syringe.  

Children under 2 years of age should receive 2 units of glucagon. Children 2-15 years should receive one unit per year of age up to 15 units. Those over 15 years old should receive a maximum of 15 units.  Always check with your diabetes team before implementing this protocol.

Blood glucose levels should then be monitored every 30 minutes for the first hour and then hourly after that.  If the blood glucose levels have not raised over 5.5 mmol/L (100 mgdL), you can repeat the process. Discard any glucagon not used within a 24 hour period.  If blood glucose levels are still not responding, seek medical attention immediately.

When should you check for ketones

blood ketone meter Diabetes Advocacy

Be sure to keep a close eye on blood glucose levels when you are sick either on your Continuous Glucose Monitor or through regular finger pokes. If you have had consecutive high blood glucose readings or are vomiting, you should check for ketones. This can be done through blood ketone strips or by using urine on keto strips. While the urine strips are less expensive, there is also a time lag in results. For quick and accurate ketone readings, it is advisable to use a blood ketone meter and test strips.

blood ketone quick guide

When to contact your medical team?

Contact your doctor or diabetes care team when any of the following occur:

  • Your sick-day management protocol dictates that you should
  • If your blood or urine tests positive for ketones or if you are vomiting repeatedly
  • If you become short of breath, excessively sleepy, have chest pains, fruity smelling breath or dry lips
  • You have had a fever for two days
  • You have been throwing up or have had diarrhea for 6 hours
  • You are unable to keep any fluids down
  • Blood glucose levels are way over target even with additional insulin
  • Blood glucose levels are under 3.9mmol/L (70 mg/dl) and are not responding with treatment
  • You have moderate or large ketones
  • You are not sure what to do

Sick days are manageable

Being sick with type 1 diabetes is a serious occurrence. It is vital that you carefully monitor blood glucose levels and watch for ketones. Stay hydrated and keep in contact with your diabetes team. When in doubt, go to your local emergency room for assistance. A person with type 1 diabetes who is sick can quickly become dehydrated and go into diabetic ketoacidosis.

Be prepared for your next sick day by downloading our sick day ebooklet.

when to contact your diabetes team

What you need to know if you have diabetes and want to get a tattoo

Tattoos can be an expression of yourself, used to memorialize a loved one, or even to make others aware that you have a serious medical condition. If you have diabetes and want to get a tattoo, here are a few things to consider.

Can you get a tattoo if you have diabetes?

people with diabetes can get tattoos

Absolutely! A person with diabetes can get a tattoo if they so desire but it is advisable that your A1c be under 8% and ideally under 7%. 

If you have had A1cs over 9%, are experiencing neuropathy, circulation or kidney problems, the University of Southern California’s REAL Diabetes program states that you could be putting your life in danger by getting a tattoo. This is because you will most likely have issues with healing that will make you more susceptible to infection and gangrene.

Need help keeping track of blood glucose levels and other tasks to manage your diabetes? Check out our Diabetes Planner

Do you need to talk to your doctor before getting a tattoo?

Again, if you have been maintaining good control and have experienced no diabetes-related complications to date, you should be fine to have a tattoo applied without contacting your diabetes team.  If you are unsure about your A1c or are concerned about your healing time, please consult your doctor before you begin.

Where should a person with diabetes have a tattoo placed?

where to place a tattoo when you have diabetes

If you have poor circulation, you will most likely NOT want to have a tattoo on placed on your buttocks, shins, ankles or feet.  You may also want to avoid common insulin injection sites like your arms, abdomen or thighs. Injecting insulin repeatedly into your tattoo could potentially mess up the design. Ultimately the choice of where you place the tattoo will be up to you.

Other things to consider if you have diabetes and want to get a tattoo

A tattoo is permanent.  While it may fade over time, it will be with you forever.  Before you commit to getting a tattoo make sure that you love the design. Find a reputable artist that can create the design that you have in mind.  Look at examples of his/her work before you begin to make sure that their style and yours are the same.

Also, make sure that the parlor your artist works in is clean and reputable.  They should only hire properly trained professionals who wear disposable gloves while working.  Needles should come from sealed containers and pigment trays should be new. The parlour should also have sterilization equipment and ensure that all surfaces are properly sterilized including their chairs.

How to care for your tattoo

Every tattoo parlor has a different protocol on how to care for your tattoo.  Follow their instructions.  They are the experts.  There are a few common practices that you should follow, however.

  • Gently wash your tattoo every morning and night with lukewarm water and antibacterial soap. Pat it dry with a clean towel or paper towel.
  • Rinse it with water (at least) any time it comes in contact with dirt or excessive sweat, or other dirty environments.
  • Apply a recommended “lotion” at least twice a day. Vaseline or cocoa butter are usually recommended. Avoid anything with added scents or colors–these could contribute to an infection.

What are the normal stages of healing for a tattoo?

It usually takes about 30 days for a tattoo to be fully healed.  During the first week you may see some oozing, swelling, and/or redness that gradually gets better each day.  There will be some scabbing that begins to form over the area. Remember do NOT pick at the scabbing.

During the second week, you may find that the tattoo is itchy and flaking may occur.  This will continue until all of the dead skin and scabbing has fallen off.

In the final 15-30 days, you will see that the tattoo looks fully healed but it may appear slightly cloudy still.  The deeper layers of skin are still healing during this time so it is important to continue to follow the wound care guidelines from your tattoo artist.

Signs that your tattoo could be infected

No matter what size of tattoo you have, there is always the slight risk of infection.  Here are some of the things that you should watch for.

  • Spotty rash: sometimes red, sometimes white
  • Extreme redness 5 days after getting the tattoo
  • Extreme itching (healthy scabs will itch a bit)
  • Feels hot to the touch
  • Swelling 5 days after getting the tattoo
  • Blistering
  • Excessive oozing, pus, especially associated with pimple-like bumps
  • Foul odor
  • Red streaking on the skin around the tattoo (also known as blood poisoning)
  • Swollen lymph nodes (a sign your body is trying to fight infection)
  • Fever and tiredness

If you have diabetes and want to get a tattoo, go for it! With proper care, good blood sugar levels, and a reputable tattoo artist and shop, you should not have to worry about infections in your new tattoo. 

If you are still undecided on your design, you can view some of the tattoos that others in the diabetes community have created over the years.

Once you have made your choice and are happy with your design, we would love to see a copy of the final product! Email us at advocacy @ diabetesadvocacy.com

What to know if you have diabetes and want to get a tattoo
If you have diabetes and want to get a tattoo make sure to watch out for signs of infection
if you have diabetes and want to get a tattoo make sure the site is clean

Provincial coverage changes for diabetes technologies in Canada

Provincial coverage changes for diabetes technologies

For Canadians living with diabetes, there were two big provincial coverage changes for diabetes technologies last week.  The Ontario government agreed to cover the Libre system while the government of British Columbia declined to cover the t:SlimX2 insulin pump or supplies for its residents. This is one step forward and one step back when it comes to choice in the treatment of insulin-dependent diabetes in Canada.

Ontario Drug Program covers the Libre Flash Glucose Monitor

Effective September 16, 2019, the Ontario government has stated that they will cover the complete cost of the Freestyle Libre Flash Glucose Monitoring Systems for those who are eligible for the Ontario Drug Benefit program.  This is fabulous news for those living with insulin-dependent diabetes.  Those opting to use this system will be eligible to have 33 sensors covered per year.

While people in Ontario are celebrating the expansion of their provincial health program, others are waiting for their provinces to follow suit. 

Get the provincial overview of diabetes devices and supplies coverage here.

The BC Government declines coverage of the t:slimX2™ insulin pump

BC denies coverage of tslim insulin X2 pump

People living with diabetes in BC, however, were disheartened last week to see that once again their choice in insulin pump therapy had been restricted by their government.  The Minister of Health stated that the government would not be adding the t:slimX2™ to their provincial insulin pump coverage

If you are considering purchasing an insulin pump, our ebook can help you to know the right questions to ask your local pump reps.

Your Diabetes May Vary

As we have stated time and time again, diabetes is not a one size fits all disease. What works well for one person with diabetes may not work for another. What works at one stage in your life may not work for you at a different stage.  It is vital that people living with diabetes have a choice in how they manage their diabetes care. 

In Canada, currently, we have the choice of four insulin pumps, one flash monitoring system, and two continuous glucose monitors. In theory, this is fabulous but using these devices are costly.  If you do not have great private insurance (and not all private insurance is great for people living with diabetes), you most likely will not have access to your choice of technologies. 

If your job does not offer private insurance coverage or the company you work for has not negotiated for extensive coverage of diabetes supplies, you are most likely looking to the provincial government to provide aid.  Depending on where you live in Canada, you may or may not have extensive provincial coverage for diabetes technologies.

There should be an increase in public coverage for diabetes supplies and devices

Once again, we feel that a reduction in provincial coverage for diabetes technologies is wrong.  All Canadians living with insulin dependent diabetes should have access to the best possible diabetes care regardless of wallet size or geographic location. 

Providing Canadians with diabetes with the best possible care benefits everyone. It helps the person with diabetes to stay healthy.  This means that they are in the hospital less often.  If they are in the hospital or at the doctor less often, then they are not costing the health care system as much money.  These individuals are also taxpayers.  If they are not ill, they are able to work which provides the public coffers with more money as well.  It is a win-win situation that we continue to hope that more provinces will start to realize.

If you are currently looking to use an insulin pump or other technology but are concerned about how you will pay for it, the pump companies and CGM manufacturers have staff dedicated to helping you look at your options.  Be sure to contact them before you give up on being able to use the technology of your choice.

Ontario covers Libre
diabetes supplies coverage depends on where you live in Canada

Creating a 504 plan for children with type 1 diabetes.

504 plan for back to school

Sending a child with diabetes back to school can be a stressful event. You worry about the care your child will receive. Will the staff know anything about diabetes care? Will they understand high or low blood sugars and how they impact your child? The best way to alleviate your fears is to make sure that you have a 504 plan in place to outline everyone’s roles and responsibilities.

What is a 504 Plan?

If you live in the United States of America and are sending your child with diabetes to a publicly funded school, you should have a 504 plan in place.  According to Crystal Jackson of the American Diabetes Association, “schools typically respond to news of a student’s diagnosis by requesting a copy of the doctor’s orders for the child or the child’s diabetes medical management plan (DMMP), a document that outlines not only doctor’s orders concerning diabetes management but also other school-relevant issues, including how skilled the child is with blood sugar checks and other care tasks.”  She further reminds parents to check to see if their school has its own health forms that need to be completed by your child’s diabetes team.

Whether your child is newly diagnosed or returning to school for another year, you have a right to request a 504 plan which will spell out the school’s responsibilities for helping your child manage his/her diabetes care during the school day.  To do this, send a formal request to the school principal or designated 504 coordinator.

Once the meeting is set, you will want to draw up your own 504 plan.  There are many templates available online including ones from www.childrenwithdiabetes.com

What should you include in your 504 Plan?

creating a 504 plan for a child with diabetes. Diabetes Advocacy

In your plan, you will want to include things like:

  • Providing for extra snack times
  • Allowing extra time to finish a test when class time was missed because of taking care of a diabetes-related task
  • Checking blood glucose levels before and during exams
  • Not being penalized for diabetes-related absences
  • Specific locations for blood glucose checking and insulin injection(allowing the child to check/inject in the classroom if he/she prefers)
  • Having a buddy system in place to ensure that the child never goes to the nurse’s office alone
  • Specific guidelines on who will train staff on diabetes care, insulin and glucagon use
  • Information on how supervisions for field trips will be addressed
  • Guidelines for handling school parties and snacks
  •  Information on dealing with diabetes and supply teachers
  • Other age-appropriate accommodations like carb counting and assistance interpreting blood glucose readings for younger children
  • Juice or glucose tablets should always be wherever your child is
  • Check blood glucose levels before intense physical activity
  • The range in which your child can participate in physical activities. Note when your child is too high to participate and what you consider to low to be active.
  • Unrestricted access to water and washrooms
  • A time to speak to fellow classmates about living with diabetes and what they need to know to best help their fellow student

To learn more about how to prepare for a 504 meeting, read our ebooklet.

Who can administer insulin and glucagon in school?

administering insulin and glucagon in school Diabetes Advocacy

Depending on the age of your child, when sending them back to school with diabetes, you may be wondering one of two things—Who can administer insulin to them during school hours? And who will administer Glucagon in an emergency situation? The answers to those questions depend on where you live.

Administering Insulin and Glucagon in the United States

If you live in the US and have a school nurse, it will be the nurse’s responsibility to assist with diabetes care.  He/she will also be responsible for the administering of Glucagon via injection or nasal spray.

If your school does not have a nurse, the American Diabetes Association states that you still cannot be made to go to school to care for your child’s diabetes.  The school must arrange for the training of staff members in necessary diabetes procedures like insulin injection and glucagon administration.

Administering Insulin and Glucagon in the United Kingdom

If you live in the United Kingdom, the situation is quite similar to the United States.  There is usually a pediatric diabetes specialist nurse assigned to the child with diabetes who will be responsible for care. Other staff members may be asked to support a child with diabetes but must first be trained.  Training usually will be done by a pediatric diabetes specialist nurse.  Once trained, staff members will be able to assist with both insulin injections and glucagon administration.

Insulin and Glucagon administration in Canada

In Canada, schools for the most part, no longer have full-time nurses.  In most districts, the injection of insulin falls to the parents.  They must either arrange someone to come to the school or do it themselves if the child is not old enough.

There are some provinces that do offer assistance, however.  Outside nursing services can sometimes be utilized to assist with the diabetes care of small children.  To find out the policy of your province, see our school policy section.

The administering of glucagon also depends upon where you live.  There are some boards that allow for a staff member to be trained in the administering of glucagon for emergency situations.  There are other boards however who are not as accommodating. Often when speaking with school staff, you will find someone who will gladly take on this responsibility.

What can you do?

No matter where you live, you should make sure to meet with the school staff before sending your child with diabetes back to the classroom. At that time, you can address the issue of insulin injections and the use of glucagon. Some staff may already be familiar with diabetes care or simply want to go that extra step to care for your child when they are at school.

Learn how to prepare for your first school meeting with our back to school ebook.

Yes, he has diabetes but some treats are bolus-worthy

bolus-worthy food Diabetes Advocacy

We try to live a healthy lifestyle. I watch what I eat. I am conscious of what I feed my family.  It is the way I have always been—before and after diabetes

My children are now adults with their own minds and their own tastes.  They enjoy treats that cause my arteries to convulse in sympathy. My son, with type 1 diabetes, will also enjoy treats that have more sugar than some might think possible for a person with diabetes. He just deems them bolus-worthy and moves on.

Having type 1 diabetes means that he produces no insulin of his own. (Unlike someone with type 2 diabetes who often has some insulin production but the body is not using it properly) If he eats any food that has any caloric value, he must match that food with insulin.  Sounds simple right? It isn’t. 

Sometimes you will make a mistake and give too much or too little insulin for a meal.

He makes mistakes. When he does, his blood sugar levels will either spike really high or drop really low.  If he is high, he will need more insulin. Should he drop low, he will have to find more fast-acting sugar to eat right away. Despite that fact, as we said, some foods are just bolus-worthy! They are worth the math and the work that goes into figuring out how much insulin he will need to enjoy them.

If you don’t have type 1 diabetes, you probably don’t think about this. The reality is that many people living with diabetes don’t either because it is part of their lives. As a mother of a child with diabetes, I do think about it.

He boluses without a second thought

bolus-worthy donut holes Diabetes Advocacy

One morning, many years ago, I was sitting at the table enjoying my morning coffee.  My son had eaten his breakfast. I gave him the carb count for his meal and he bolused his insulin through his pump. As he got up from the table to put his dishes in the dishwasher, he spied the box of Timbits on the counter from the night before. His hand darted into the box and he popped a little morsel into his mouth.  I yelled out to his back “Don’t forget to bolus for that!”

It hit me then…he could not just walk by and grab a snack.  He had to give himself insulin for each piece of food that touched his lips. This wasn’t the first time that this fact had hit me but it broke my heart a little bit more. 

As I said, for my child with diabetes it was such a natural act. He simply grabbed his insulin pump while grabbing his doughnut hole and bolused what he needed. 

Living with diabetes isn’t just about figuring how many carbohydrates are in a doughnut hole and delivering some insulin.  You must also consider things like fat, protein, physical health, stress level, and activity level. 

Some meals are just bolus-worthy no matter how much thinking is involved

bolus-worthy burger Diabetes Advocacy

Now that my son is a young adult living on his own, his bolus-worthy treats now tend to involve fast food meals. He once sent me a picture of his meal and asked me to help him to figure out how much insulin he would need.

I asked him what his blood sugar level before his meal. He had been high and made a correction. We totaled up the carbohydrates in the meal. We then considered the high-fat content. Fat would mean that it would take longer for the carbohydrates to be used. We would need to prolong the delivery of the insulin rather than cover the entire meal right away.

After a bit of back and forth, we decided on the correct amount to cover the fat, the high, the protein, the activity level, and the carbohydrates in the food.  Time and blood sugar checks would tell us if we made the right guesses or not.

When you live with diabetes, counting carbohydrates and all that goes with it is just part of your day. You don’t think a lot about it. For those of us who don’t have to watch every morsel that passes our lips, the process is awe-inspiring. Imagine if you had to decide if what you wanted to eat was worth the hassle and the thinking involved just to enjoy a treat?

What the Disability Advisory Committee Annual Report means to Canadians with diabetes

Disability Advisory Committee report Diabetes Advocacy

The Disability Advisory Committee (DAC)  was brought together to “provide advice to the Minister of National Revenue and the Commissioner of the Agency on the administration and interpretation of the laws and programs related to disability tax measures; ways in which the needs and expectations of the disability community can be better taken into consideration; current administrative practices and how to enhance the quality of services for persons with disabilities.”  In May of 2019, they released their first report.

The 107-page document was a very interesting read.  It had 42 recommendations in all.  For people living with insulin-dependent diabetes however, the most important issues to note were the following: 

Forms should be easier to access and to fill.

Many individuals, groups and physicians found the form T2201 confusing and difficult to fill out. Current wording left some doctors feeling that they were not qualified to fill out the forms. This left a rift between them and their patients that they felt should not exist.

The DAC recommended that the forms be much more streamlined and easy to use.  They also suggested that individuals should be able to apply for the disability tax credit online.  This change has been implemented by the Canada Revenue Agency this year.  You can now upload your application and supporting documents using your “My Account” access code.

More people should be aware of the credit.

awareness of the DTC Diabetes Advocacy

The Disability Advisory Committee felt that more individuals and their caregivers should be made aware of the disability tax credit.

They felt that a public awareness campaign on the credit and its eligibility criteria should be a high priority for Revenue Canada. They felt that physicians and individuals would benefit from videos and in-person sessions.

CRA staff should be uniformly trained.

Individuals, groups and doctors noted that it was very difficult to get assistance from Revenue Canada agents when they had questions.  If they did manage to get through to a person for help, the person was either no help or provided contrary advice to what was told to another taxpayer. It was felt that all agents should receive identical policy training and that a dedicated call center be created for questions related to the disability tax credit.

It was also felt that there should be a uniformity in the way applications were handled.  A more streamlined process would help both individual taxpayers and the staff involved in accessing applications.

Approval should be based on a diagnosis.

The DAC recommended that certain conditions should automatically be approved for the disability tax credit if they are using specific forms of life-sustaining therapy. 

It was felt that if a taxpayer was alive, they had to be successfully using life-sustaining therapy.  “These are therapies that are lifelong and continuous, requiring close medical supervision. Without them, the individual could not survive or would face serious life-threatening challenges… These therapies include but are not necessarily limited to: intensive insulin therapy for type 1 diabetes…”

The DTC should be a refundable tax credit.

access to financial assistance

Currently, the disability tax credit is a non-refundable tax credit. In a nutshell, this means that it reduces your taxable income.  If you are a low-income earner, this credit has very little financial value to you.  The DAC would like to see this credit turned into something that would offer greater benefit to those who have a lower income.

Registered Disability Savings Plan Access

The Disability Advisory Committee suggested that there should be another avenue of access for the Registered Disability Savings Plan. They felt that clawing back the RDSP when someone no longer qualified for the tax credit was inappropriate and punitive. Such a practice makes it impossible for many individuals and families to do solid financial planning.

While the Federal government has not yet created another way to access the RDSP, in their February 2019 budget they have announced they will no longer claw back money contributed if the DTC is lost.

Follow up letters should have more transparency.

Follow up letters are the bane of our existence. Some people get them. Some people don’t. If you get them, you tend to feel stress and pressure.

According to the report, in most cases, these letters are not even necessary.  The only thing it does is stall the process and make doctors feel that their credibility is being undermined.

To make things worse, the Canadian Revenue Agency does not always let individuals know that a follow-up letter has been sent to their doctor.  The DAC finds this unacceptable.

The committee feels that complete transparency on the part of CRA would “reduce the stress, time and cost involved in applying for the DTC. A more open and respectful process would also reduce the need to appeal CRA decisions regarding DTC eligibility.”

Easier access to appeal services and tax court.

disability tax credit

If a person is denied the disability tax credit, they often do not know that they can ask to have their application reviewed by another agent.  They don’t know that they can send in more supporting documents from their doctor before even starting a formal appeal

Many people who apply for the DTC are intimidated by the idea of taking on the federal government in court. They may lack the knowledge or the resources to take their case forward even if they would most likely win. The committee, therefore recommends that a straightforward, transparent and informed process should be created.

Applicants should have access to all relevant information (including the precise reason their application was denied) and documents (including copies of all information submitted by health providers that pertain to their application).

The Disability Advisory Committee feels that the CRA should create a document entitled “Your Rights When a Notice of Determination Denies a Claim for the DTC”.  It would explain the requirements, timelines and details for filing a review; a notice of objection with the Appeals Branch; and a notice of appeal with the Tax Court of Canada. It would further explain many more details required to launch a successful appeal.

What can we do with the Committee’s recommendations?

These recommendations echo much of what has been suggested by the Senate Review Committee.  The repetition of the same themes can only serve to strengthen our position…that the Disability Tax Credit should be fairly and equitably applied to all individuals with intensely monitored insulin-dependent diabetes.

Now that both groups have presented their reports, it is our job as advocates and people living with diabetes to share their message. We must ensure that our sitting Members of Parliament are aware of these recommendations and support them. 

It also falls on us to keep this issue relevant in the upcoming Federal Election. Make sure that those individuals seeking to be your next MP are also aware of the issues.  Help to educate them and share with them why these changes must be made by the Canada Revenue Agency.  Ask that the next Minister of Finance work to see these changes happen and allow people with insulin-dependent diabetes fair and equitable access to this credit.

What does this mean for Canadians with diabetes?

Currently, the findings in both reports remain suggestions.  Some suggestions like easier access to the DTC online, have been implemented by the Federal government but most have not. 

Until all of these recommendations are accepted by the Federal government and the Canadian Revenue Agency, access to the Disability Tax Credit remains the same. Unless you are under 18 years of age, you still must prove that you spend 14 hours per week on approved therapies.

Diabetes Advocacy has a short quiz that can help you to decide if you should apply for the tax credit based on your current insulin therapy regimen.  We also have a spreadsheet that can help you to track the time you spend on your diabetes care.

You can learn more about what is involved in applying for the Disability Tax Credit here or message us any time with your questions.

DAC May 2019 report infographic Diabetes Advocacy

YpsoPump® receives Health Canada Approval

ypsoPump Diabetes Advocacy

Ypsomed Diabetes Care recently announced that their insulin pump YpsoPump® has been approved for sale in Canada and is now available for purchase. Here are a few things that we know about the YpsoPump®.

Who is Ypsomed?

Ypsomed is a Swiss company with a long history of involvement in area of diabetes devices. twicediabetes.com states that they were behind the Disentronic insulin pumps that were available between the 1980s and early 2000s.

According to Ypsomed Diabetes Care “Ypsomed has set itself the goal of making medical self-treatment a matter of routine for people with diabetes. This is why the development team of the YpsoPump had your needs in mind. The result is an insulin pump which focuses on the essential functions and is easy to handle. It features the best of 30 years Swiss medical device engineering.”

How big is the YpsoPump®?

According to the Ypsomed Diabetes Care website, the YpsoPump® measures 7.8 cm × 4.6 cm × 1.6 cm and weighs 83 g (including battery and filled cartridge).

In comparison, the Medtronic ® 670G measures 5.3cm x 9.6cm x 2.4cm and weighs 85g.  The Tandem t:slimX2® is 7.95 cm x 5.08 cm x 1.52 cm and weighs 112g.  The OmniPod system includes the OmniPod is  4cm x 6cm x 1.8cm and weighs 34 g with a filled pod.  The PDM is 6.35cm x 11.4cm x 2.2cm and weighs 125g.

What are some of the key features of the YpsoPump®?

The YpsoPump® is marketed as an “easy to learn” insulin pump offering the “essential features”. 

Ypsopump insulin to carb screen

The features that we have seen include:

  • 4.1 × 1.6 cm, OLED touch screen that uses icons to help you navigate the insulin pump options
  • Pre-filled, 1.6mL (160 unit) glass cartridges that will last for 7 days in the insulin pump or up to 30 days if filled and kept in the refrigerator
  • Waterproof rating of IPX8 (immersion to a depth of 1 m for up to 60 minutes)
  • Bolus delivery in increments of 0.1, 0.5, 1 or 2 units
  • 2 custom basal patterns set in increments of .01 units by the hour
  • Temporary basal patterns that can be set at 0%-200% for 15 min to up 24 hours.  They must be set in 10% increments.
  • Uses one AAA alkaline battery that lasts for 30 days
  • Mylife mobile app for smartphones that sync with the YpsoPump® via Bluetooth® technology.

Mylife Mobile app

YpsoPump

The Mylife app can be downloaded for both iOS and Android. From this app you will be able to customize screens and setting for your YpsoPump®. This is also where the carb calculator and insulin on board will live. You will not find these options on the insulin pump itself.

Ypsomed log book

This app does not currently speak to the insulin pump. This means that once calculations are done on the Mylife app, they must be manually input into your insulin pump.

The Mylife app also has a great looking built-in log book. You will be able to enter data from activities as well as bg levels and carb counts in one spot to analyze.

Does it have a Continuous Glucose Monitor?

At the moment, the YpsoPump® does not work with any CGM or flash technology.  It has been suggested that Ypsomed Diabetes Care is in talks with the key players and plan to add this technology in the future.

What will the YpsoPump® cost?

The regular retail cost of this pump will be $6400. YpsoMed is currently working with all provinces to have their insulin pump added to provincial programs but at the moment, it is not covered.

YposMed’s introductory offer

The YpsoPump® pump will be offered for free to existing pumpers who apply to switch to the YpsoPump ® between July 8 and September 30th, 2019. You will be required to purchase three months supply of both insulin cartridges and infusion sets at the time of purchase. This will be in addition to the free supplies that will come with your pump start.

If your pump warranty has expired, you’ll receive a 1-year warranty on your YpsoPump ®. If your insulin pump hasn’t expired, your warranty will last until 5 years from the purchase date of your new pump. 

You can contact YposMed Canada for more details.

What does it mean for people with diabetes?

four insulin pump choices Diabetes Advocacy

Choosing an insulin pump is personal.  The pump must fit your lifestyle and your needs.  The fact that there is now a fourth option for people with insulin-dependent diabetes is wonderful. 

If you are considering insulin pump therapy or are wondering if you should change from your current insulin pump, remember to shop around. Meet with all of the insulin pump reps and find the best fit for you.  Our ebook on choosing an insulin pump can help you to figure out which features are important to you and give you ideas of questions to ask the representatives that you speak to.

Mothers Day Ideas for Diabetes moms

It is May once again and that means Mothers Day will soon be here!

Finding the perfect Mothers Day gift can be a huge challenge. I often struggle to come up with the perfect idea for my mom and have an even harder time when my kids ask me to come up with ideas for their diabetes mom. 

This year I thought I would give you a few gift ideas that I think mothers with diabetes and mothers of children with diabetes might truly enjoy.  Whether you have a lot to spend or nothing at all, here are things that Mom is sure to love!

Myabetic

Myabetic bag

Myabetic has incredible bags and accessories for people living with diabetes.  You can scroll through many amazing styles and designs.  One is bound to be just perfect for your special diabetes mom!

Tah Handcrafted Jewelry

Tah ring

I love this place.  Years ago I purchased an awareness ring and the customer service was fantastic.  A quick scroll through their Facebook page shows that they are still producing gorgeous items that will definitely appeal to your mom.

Sugardrop Sweetwear

sweat shirt

Sugardrop is a great clothing line started by an inspirational young woman with diabetes. Get Mom a fun hoodie or tshirt that she will love! This one is on my wishlist!

Spa Day for your diabetes mom

spa day

Whether you send Mom for a day of pampering or create one yourself, Mothers Day is the perfect time to remind Mom to take time for herself. 

Tea or Wine Time

give wine

Find Mom that perfect mug or glass and allow her to fill it with the beverage of her choice.  Whether she is a tea drinker, a coffee lover, or enjoys a lovely glass of wine at the end of the day, pick up a special treat for her and allow her the time to truly unwind with it.

Book Lovers Heaven

diabetes books

If Mom is like me, you can never go wrong with a book. Find her a great new read (we have some awesome ones here) or give her a gift card and allow her to choose one of her own. Once again, make sure that you also help your diabetes mom to have some private time so she can enjoy her new book and recharge herself.

Coupons are a great gift for the diabetes mom in your life.

coupons are a great gift for diabetes moms

Give Mom coupons for things like a night of uninterrupted sleep when someone else will handle the diabetes care.  Give her a coupon for a lunch made just for her by you. Think of other tasks that Mom could use a little help with and add them in as well.  Allow her to redeem the coupons on days when she just needs a little break.

Time with you is the best gift for any mom.

time together with your diabetes mom is the best gift

This honestly is the absolute best gift of all.  Plan a day with Mom or even just a few hours.  Make it all about both of you! Schedule a walk in the park, take in a movie or meet for a coffee.  Time for just the two of you to make memories will be the best gift you can give.

What is your favourite Mothers Day memory? Which gift stands out in your mind? We’d love to know!