Diabetes Advocacy Keeps Growing!

Its a new year. A lot of people make resolutions to do things like lose weight, check their blood sugars more often, or to get a bit more active. Another option is to choose a word to live by for the year. This is a word that inspires you and encourages you. A word that resonates with you and helps you move towards your goals. My word for this year is growth.

If you have been following Diabetes Advocacy for any length of time, you have seen a lot of changes.

We started out as a place for people to share information about the Disability Tax Credit. We grew to help families who were struggling with their children with diabetes in schools. Diabetes Advocacy became a hub for insulin pump program advocacy and so much more. Over the years, we added a blog to document our lives, review books and products, and share information.

Diabetes Advocacy has also undergone some cosmetic changes. The website is now completely mobile friendly. We can be found on Instagram, Twitter, and Facebook. We have a monthly newsletter once again that shares tips and information.

Diabetes Advocacy now has over 700 pages of content designed to help people living with diabetes! This year I will continue to update the site and provide great content and more products. There will be more downloads and tools to make your life easier! There will be more of the great content you have come to love over the past 16 years.

What would you like to see added to the Diabetes Advocacy site? What topic would you like to see us tackle?

All of our downloads can now be found in our new digital store! We will continue to add more products on a monthly basis so be sure to take advantage of our growth!!

Did you make a resolution this year? Do you have a word that will inspire you? Let us know!

Which Liberal Government?

which liberal government...Diabetes Advocacy

This summer I saw a number of variations of this status posted all over Facebook… “I would like to highlight the Liberal government removing the subsidy for blood test strips. Diabetics need very frequent blood testing, up to 5+ times a day. The cost of strips is $70.00 – outcome – reduced blood glucose testing and more hospital admissions from hyper or hypoglycemic episodes. Diabetes . . . I am asking if everyone could put this as their status for 1 hour. I’m pretty sure I know the ones that will. Think of someone you know or love who has or has had diabetes. My hope is that in 2016 a cure will be found. Will you post it for 1 hour? To honor those who have fought or are fighting diabetes.? “

Many people were sharing this status.  Many more were asking…where is this from? Whose government is doing this? The answers were surprising.

How many Liberal Governments were cutting funding?

I was certain that it was Newfoundland.  In the spring the new Liberal government had announced changes to the provincial prescription drug plan.  They were limiting the number of test strips to 2500 annually for those using MDI, 700 for those using just a long-acting insulin, 100 for those not using insulin and 50 for those who have only recently been diagnosed with Type 2 diabetes.*

As this post continued to make its rounds, however, I was shocked to see that a number of other locations were also claiming that this was a reality in their home area. People from as far away as Australia were saying that this had happened to them.  They said it was their government that the post was directed at.  All I could think was, “this is crazy!”

The high cost of tight control

For years, study after study has shown how important tight control and home blood glucose monitoring is.  They have shown that good control equates to improved health outcomes AND immediate financial benefit in terms of reduced loss of work. Why would governments think that they were saving money by cutting access to blood glucose testing strips?

This entire scenario hits too close to home as my son turns 19. He will soon be in a position of losing his health care coverage.  His days of being covered by his father’s private health care plan are numbered. 

My stomach aches each time I think of this safety net being taken away. He does have some coverage from the province.  We will find a way but what about other children?

I don’t mean small children, I mean adults who are struggling to find their way.  What about them? What about their families? How do they cope? How do you work a minimum wage job, pay your rent, buy your groceries AND cover your diabetes care costs?

Again, we know how important blood glucose checking is. As parents, we have spent years asking our children “Did you check your blood?” and “What was your blood glucose reading?”  How do they answer those questions when they can’t afford the test strips? How accurate will their guess have to be?

Why blood glucose testing is important

Without proper blood glucose checking, they cannot accurately dose their insulin. They cannot make exact judgment calls on corrections.  They will run a high risk of complications.  They most likely will have more sick days.  This will cost governments more money in lost tax revenue and create an increased drain on hospital services.

If a person with diabetes is unable to check their blood and stop potentially dangerous high blood glucose levels on their own, they will be forced to seek hospital treatments.  A 2008 report in the Toronto Star suggests that one typical hospital stay then cost approximately $7000**.

$7000…you can get 100 strips for $80-$100.  If you test 8-10 times per day that one hospital stay would still cost more than 2 years worth of test strips. Two years. 

It would appear that the people in charge of making these policy changes need to better understand what they have done.  Basic math shows the folly in such policies. We can only hope that public pressure and common sense will ultimately prevail.  Our loved ones with diabetes need access to the proper medical supplies to ensure that they can continue to be healthy, productive members of our societies.

*http://www.thetelegram.com/News/Local/2016-04-17/article-4500650/Changes-coming-to-provincial-drug-program/1

**https://www.thestar.com/news/canada/2008/03/18/average_hospital_stay_costs_nearly_7000_study.html

Are Diabetes Advocates in Canada too quiet?

are diabetes advocates too quiet

I recently had a conversation about diabetes advocates that has left me thinking. Are diabetes advocates in Canada too quiet?

The conversation itself was about patient engagement. We were talking about access to medications and much more. It was very interesting and a bit refreshing.

The ins and outs of the conversation are neither here nor there.  What got me thinking, however, was the other person’s claim that after working for years in the realm of cancer drugs, the support for new drugs in diabetes seemed to be lacking. This individual felt that there was not the same enthusiasm and support from groups and individuals as there was in the world of cancer.

All of this got me thinking. Were Canadian diabetes advocates too quiet? How could we be louder? I know that patients love to see new technologies but sadly not everyone can afford them. What if working with big pharma companies, access could become easier? What if we weren’t talking to the right people? How could we fix that?

There are many advocacy groups in Canada and around the world. There are the diabetes associations. There are chapters of the Juvenile Diabetes Research Foundation throughout the world. You can also find many grassroots groups and organizations in most countries.

As social media grows, so do online groups. Canada has seen the inception of such groups as Type 1 Together and the US has DPAC. There are also many small communities that have formed and are ready to advocate and educate the misinformed at a moments notice.

Is the Canadian diabetes advocacy voice too quiet? Is the worldwide voice of people living with diabetes too quiet?

real diabetes in a cup

Actually, I don’t think so. I think that the voice of the online diabetes community is getting louder and stronger. Just look at how quickly the people calling a Starbucks drink a “cup of diabetes” were corrected on Instagram. A lady recently balked at a man checking his blood sugar levels and injecting at the table in a restaurant. She now has her own meme thanks to the diabetes community.

doreen

Does this translate into improved access to diabetes drugs for Canadians? Most likely not. It is getting people talking, however. I think it is also creating a stronger, louder voice. (Ask the Minister of Finance in Newfoundland and Labrador what happens when you make a flippant remark about diabetes care in that province.)

Are you interested in having your voice heard? Download our tips for meeting with politicians to help ensure you have a productive next meeting.

The Bad Kind

The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.  I had only read the introduction when I wanted to cry.  Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.

Your readings are good or bad.  They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one.  The food you eat is either good food or its bad and a diabetic shouldn’t eat it.  Your A1c when you see the doctor is either good or bad.

The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”.  Another person had mentioned that someone had died because they had the “bad kind of diabetes”.  I wanted to say that there is no good kind!  You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way.  It wasn’t my place to educate at that time.

The good kind I assume, is the kind that is managed by diet and exercise  but is it really that good? You still have to live with guilt for each piece of food that enters your mouth.  You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–“You have the bad kind of diabetes”.

What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?

Personally, it is always bad.  In all of those cases, our bodies have rebelled against us and are not working as they should.  We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t.  That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.

This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes.  Sadly this is not the case.  Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier.  Unfortunately, that “good and bad”  issue stops that from happening. People fear that they will be “bad” if they are on insulin.  This further translates to the thought that  those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.

I thought about other diseases and wondered if any others have it “bad”.  Cancer has stages.  Diseases like MS are referred to has having “full blown MS” versus the early stages.  I could not think of any other disease that allows people to have the “good kind” or the “bad kind”.  Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes.  We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.

What is the answer? How do we fix this? I don’t think that there is a quick fix.  I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”.  We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.

blame

The Diabetes Game Show

Its been over two months since I have had to wake up and test a bg level.  It has been three weeks since I last asked “Did you test before you started eating?”  My brain seems not to care.

It doesn’t seem to realize that I no longer have to think about diabetes 24/7.  It does not realized that diabetes has moved a bit further back in my life.  It no longer shows itself in every move I make.  It moved away with my son and while I still worry and am involved in many aspects of his diabetes care, I do not have to be constantly on alert.  My brain seems to forget that.

A few weeks ago, I was on holidays.  This meant being able to sleep in and stay out late. I enjoyed some great entertainment and new sights. Despite the new experiences, there was also an old habit that reared its head…dreams of diabetes! I was in Las Vegas, so I guess my mind felt it only fitting to have me dream of gaming.

In my dream, I was part of a game show. I was not exactly a contestant but I was being asked my answers before they would say if the contestant was right or wrong. The questions were all related to guessing what someone’s blood glucose levels were based on how they felt.  I had to say if they were high or low but not just “high” or “low” but provide an exact reading of where I felt they were.  As if that was not enough of a challenge, my mind knew that I was in the US and demanded that I convert all bg levels into mg/dl!  I could not give a 2mmol reading but had to say that I thought the person was 36.

I have no idea what anyone won. I don’t know how long the game went on or what the ultimate goal was but I continued to provide readings based on experience with my son. I thought, calculated and gave my impressions…until I woke up!

I have had (and still have) those panic dreams of forgetting to do a night test. I have (and still have) nightmares about A1c results.  Dreaming of being part of a diabetes game show was definitely a first for me however!

diabetes game

Diabetes is a Piece of Cake

Diabetes presents many challenges.  There is the obvious one of trying desperately to match food to insulin while factoring in nutritional content, exercise (both past and anticipated), emotions, health, and more.  There is also a challenge in trying to get the outside world to understand that our fears and concerns are real.

Fourteen years ago, I knew nothing about diabetes. I had no idea how serious it was.  Today, my biggest challenge is getting people to understand that this invisible disease that appears to be a piece of cake to manage only looks that way because of the hard work that is put in behind the scenes.

The average person who walked by my son on the street would never know that he has lived with diabetes for almost 14 years.  He has no complications. He doesn’t have a cane or any limbs amputated. He looks like an average 16 year old male.

They might notice his insulin pump or his remote meter when he tested. If they did they would probably be amazed by the technology and think that it made life pretty easy. If they watched him eat in a restaurant, they would seriously wonder what all of the fuss was about. With the exception of the diet drink that he would order, the rest of his meal would be more than two average people would eat at one sitting and he would somehow find room for dessert! How can life be that much of a challenge?

What they don’t see is how hard it can be to make that technology  work to its very best. They don’t see the time that my son and I spend reviewing  data, discussing what happened when he went low–had he been exercising in the past 24 hours? What was his reading in the test before? Did he count the carbs properly? Did he factor in fat and extend the insulin delivery over time or simply give it all in one shot?

They don’t see us discussing highs–was there a site failure? Did he run out of insulin? Did he make a mistake in how many carbs were in his food? Did he over-treat the low that he had earlier? Did he miss a low and his body rebound with a high? Is he growing? and the list of questions goes on and on but only we hear them.

They don’t see the effort and thought that goes into every setting on his pump.  The details that I examine before inputting the amount of insulin he gets delivered into his body just so it can function.  They know nothing of the detailed calculations involved in deciding how much insulin he should get for each crumb of bread or bite of apple that passes his lips.

An average person does not realize that keeping my son alive and as healthy as he is has taken a lot of work and involved some serious stress at times.  Diabetes does not stop at night and neither do we.  My son is tested throughout the night and if he is high or low during that time, he must be treated.  Nights become more dangerous because unlike the day when he tends to notice fluctuation in his blood glucose levels, at night he will sleep through all but the most extreme highs.  Whether we are up for 15 minutes during the night or two hours, life goes on and the world does not notice what we had to do to keep my son alive and healthy.

The biggest irony of diabetes personally is that the harder you work, the more normal you look,  the more people think that you are exaggerating just how much work it takes.  Diabetes is an invisible disease.  With the exception of a blood test, a needle or a pump, no one “sees” the challenges that diabetes presents. They don’t see the hard work behind the scenes. They tend to think that you must be over-blowing the fears and concerns that you have.  They do not understand that the reason that you or your child looks so healthy is because of hard work not because diabetes is “no big deal”.

eat the cake

How do we change this? How do we balance getting people to understand the struggles while showing them that diabetes does not stand in the way of being who you want to be? That is yet another challenge but its a challenge that many with diabetes do daily with a strength and confidence that inspires us all. 

I Retire!

I am almost through Moira McCarthy’s new book “Raising Teens with Diabetes”.  There are so many really great things that I will share with you soon in a complete review but last night I hit the section on advocacy.  Obviously I am heavily into diabetes advocacy, I mean I used it is the title to the blog and my website! My son on the other hand is the complete opposite.

I have never been one to stay quiet about my opinion.  I have always believed that if you don’t say something how can you expect people to know what you are thinking? If you don’t like something, say something to people who can make a difference.  That has been my motto since my preteen years (yeah I have been a mouth piece for a long time!).  In my defence, I don’t just shoot off my mouth, I try to listen and learn as well but back to my son…He is quiet.  He is private.  He hates to talk about diabetes.  He does not enjoy diabetes related functions and suggesting that he become an advocate would be like suggesting that he light himself on fire and run stark naked through Main Street. It is not about to happen!

How do you balance such diverse personalities? Carefully! As my son has aged, he has become more vocal about his feelings.  At one point he literally told me that he quit! We had been involved in a national diabetes campaign a few years earlier.  He was okay with it at the time. It meant a trip to Toronto (although he hates to travel) and a few cool interviews for both tv and print media.  That was okay but the second time around was more questions about diabetes and another photo shoot.  He was done. No more photo shoots. No more being in the “public eye”.  He was retiring at the ripe old age of 14!

I agreed.  I allowed him to slip into anonymity.  Diabetes became something that he had to deal with but the advocacy and the public “stuff” would simply be for Mom to deal with.  Ironically he seems to have a lot of confidence in my abilities (and maybe that explains why he “retired” with such ease).  When we have talked about the future, costs of medical devices, and such, he simply reminds me how many years I have to get the governments to all straighten up and keep him healthy!  (in other words have insulin pumps covered everywhere in Canada for everyone regardless of age).  A tall order from a young man! rocker

Blog Week LOVE!

Spread the Love – Sunday 5/19 Link List

Wow Day 7 of Diabetes Blog week already! I apologize for missing out on yesterday’s Art Day.  Its a long weekend here in Canada and honestly…I am enjoying a country weekend with limited internet access and creative supplies. I did not want to miss sharing some of my favorite new blog finds however.

I have always enjoyed the honestly and talents of Diabetes Blog Week founder and organizer Karen Graffeo.  After reading Scott Benner’s new book “Life is Short, Laundry is Eternal”, I have also taken the opportunity to look at his blog “Arden’s Day“.   

This week I made sure to check in on many of these and other great diabetes bloggers. I was touched by Scott of “Rolling in the D”s day 4 post on “coming out of hiding“.  I was so happy when reading about the favorite D-memory on Nacho Blog.  I hope my son will have such an amazing employer!

Finally, I got the chance to sit and read posts by Mike of “My Diabetic Heart”.  While I have followed his tweet for some time, I don’t often have a chance to click on his posts but after reading this wonderful post from Day 2, I definitely will make the effort to do so in the future!

Thank you everyone who shared this week and I am looking forward more amazing reads!

1000 Likes :)

The other day I was looking at my website stats and was both surprised and pleased.  It would appear that I reach over 10,000 people each month.  I know for many sites, they see that in the run of a day or even sooner than that but for me that is pretty amazing.

I do not have an advertising budget. I don’t have a huge staff (I am the only staff and I don’t get paid).  The website (for all of its faults and victories) is created by, managed by and filled by me. I do not have a computer background. I have slowly learned html codes on an as needed basis.

The Diabetes Advocacy website has slowly grown and reached people based solely on word of mouth.  To me that is pretty amazing and exciting!

As I have noted before, the phoenix on my logo has a twofold meaning.  There are personal struggles that it represents but more importantly, I felt that it aptly represented the stages that we go through when dealing with diabetes.  At diagnosis our world explodes and falls to ashes around us.  Over time, we see amazing things grow out of those ashes–achievements, friendships, and strengths that astound us (to hear more about my thoughts on this join my webinar May 5th).

Out of the ashes, I created a website geared to Canadians living with diabetes and now it reach over 10,000 people each month.  I am a mom of a child who was almost killed by this horrible disease sharing information with thousands of people.  It’s rather incredible and humbling.

I am honored when I go to various diabetes engagements as an audience member and presenters as well as other attendees come up to me and either say “Oh you’re that Barb?!”  or immediately tell me that “I send people to your site everyday. There is no better source of information for _(fill in the blank) ___”.  They are the reason that I touch so many people.  They truly touch me.

Clipart Illustration of a Bunch Of Floating Party Balloons With

Today my Facebook page reached 1000 likes.  I know that some sites have done that in a matter of days after opening a Facebook page.  In my case it took time to develop that relationship.  It happened by way of friends–some unmet, who liked what they read, learned or heard and shared with their friends.

Thank you everyone for joining me on this crazy journey. You truly do make it a lot more pleasant! Here’s to reaching over 2000 Facebook people next 🙂

Kevin Kline tells it like it is

I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget “The Big Chill” or “A Fish Called Wanda”).  I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful “celebrities”.  Today I watched a clip that made me realize that he is more than just a great actor, he is a father.  He is not just any father.  He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.

Today he told the world that “Once you have a child with diabetes you immediately stop being merely a parent.  You become a doctor, nurse, nutritionist, expert.” Mr. Kline when on to point out that diabetes never stops and worries never sleep…and neither do the parents.

For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview.  The only part that saddened me was the focus on technology rather than a true cure. 

I appreciate technology.  I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have Continuous Glucose Monitoring technology to take forward in his life but he will still have to wear it.  He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost…a huge financial one. 

At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other “stuff” associated with this technology? That truly scares me. It is something that he will have to consider when both choosing a career and deciding where he will live.

I do not want to take away from the message of Kevin Kline, however.  He showed true emotion as a father of a child with diabetes.  You could see the worry and sleepless nights in his face. 

Mr. Kline described diabetes as being similar to having a newborn all over again.  With a newborn, we carefully listen for breathing and fear SIDs.  With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.

Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died.  He was a teenaged boy, just out of high school.  This morning I received a memorial from a family of a 24-year-old young man who had died because his diabetes became too much of a burden for him to carry. 

It’s all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say.  I pray that the world listens as well. Together we can work towards a cure, not just a larger bandaid. Together our children will live long and healthy lives.

Do you know the warning signs of type 1 diabetes? Download our free chart and make yourself aware. You may save your life.