A New Cause for Hope

Scientists continuing to work on the cause of T1D have made an astounding discovery.  There will be much more required before the trial in mice is replicated in humans...but there is much cause for hope in THIS very important work with stem cells.

You can read another well-articulated article on this discovery HERE.

A Small Surprise

Gentle Readers, you may recall that in October, I sent a letter to my MP and to the Prime Minister with respect to proposed alterations to the (Canadian) Disability Tax Credit that would seriously impact the lives of those living with Type 1 Diabetes (and, doubtless, others).

Yesterday was Sir Frederick Banting's birthday.  Today I received this in the mail...

Thankful for small mercies.

"...do good: as we have time, and opportunity, to do good in every possible kind, and in every possible degree to all..."
-- Rev. John Wesley, homily published in Sermons on Several Occasions, 1799*

*Quote Investigator, September, 2016.

Put In the Mail This Morning

October 24, 2017.

P.O. Box 384,
Mirror, Alberta
T0B 3C0

The Office of the Prime Minister,
50 Wellington Street,
Ottawa, Ontario
K1A 0A2

Dear Mr. Trudeau

I am writing with respect to apparent changes being made in the interpretation of who and who is not eligible to access the Disability Tax Credit. Specifically, I understand from recent news reporting and commentary that there is a large and growing number of Canadians with type 1 diabetes (T1D) being denied relief through Canada’s Disability Tax Credit (DTC).

An incurable chronic medical condition affecting nearly 250,000 Canadians, T1D requires injections or infusions of insulin throughout the day in order to sustain life. To determine the dose of insulin required, individuals must test their blood (sugar) glucose six or more times a day. Canadians with T1D are at constant risk of dangerously high blood sugar, which can lead to complications, or dangerously low blood sugar, which can result in a coma or death. Diabetes is the leading cause of amputations, blindness, kidney and heart disease, and other debilitating conditions. Regardless of whether they are a child or an adult with T1D, patients should have the same rigorous standards of care.

The costs of managing this challenging and expensive disease are significant and increasing. Those using insulin pumps and continuous glucose monitoring may face out-of-pocket costs of more than $15,000 per year. Studies show that these costs adversely affect the ability of some with T1D to follow their prescribed treatment protocol, at significant negative impact to their long-term health and at significant cost to the Canadian health care system.

I was married for thirty-one years to a man who developed T1D at age 7.  He died in 2006, a few months before his 54th birthday.  The last ten years of his life were particularly difficult as, despite careful management of his illness, its destructive nature became more and more evident.  During this time I was the sole provider for our family (we have two children), and he received a Canada Pension disability benefit.  His disease was a ‘pre-existing condition’ that disqualified him from receiving any benefits from the private disability insurance he had through his former employer. (He left the work force in 1987 to better manage his disease’s progression.)

Although decades ago the Alberta government rescinded funding for insulin syringes for all who need them – choosing instead to give free syringes only to drug addicts -- I remain thankful for our public health care system, which covered the cost of kidney dialysis from 1996 through to his death, as well as the cost of many hospital visits, home nursing care and a thrice-weekly assistant for breakfast and morning care, not to mention the public health support we received for things like artificial limbs (he lost both legs below the knee) etc.  The Disability Tax Credit was an important part of managing our household finances during these years.

Many Canadians living with T1D have long claimed the Disability Tax Credit (DTC) under the category of Life Sustaining Therapy, given that intensive insulin therapy is complex and time-consuming. For those Canadians with T1D that have accessed the DTC, the credit has helped defray some of the uninsurable costs of insulin therapy. It is also money well spent, as countless studies have shown that people with diabetes who manage their disease more rigorously have fewer complications and therefore cost the health care system far less over time.

Unfortunately, the DTC has always been inconsistently granted, and recently that inconsistency has grown markedly worse to the point where it has become very difficult, if not impossible, for adults with T1D to qualify for the DTC. Diabetes Canada is investigating this issue and informs me that more than 80 per cent of the applications being received from people with T1D are now being denied, whereas a year ago 80 per cent were being approved.

If the CRA has taken a policy change to arrive at the conclusion that adults independently administering insulin therapy (people with T1D) don’t need 14 hours to do so, they should be required to engage in consultation on that policy change and to communicate it broadly to all stakeholders. I see no evidence that this has been done in this case.

Despite physicians having duly certified, in accordance with the Income Tax Act, that their patients require more than 14 hours a week for their insulin therapy, applicants are now being denied on the basis that “the type of therapy indicated does not meet the 14 hour per week criteria.” These denials are in contradiction of the certifications provided by licensed medical practitioners and do not appear to be based on evidence.  The medical practitioners who certify these applications for the DTC do so based upon their detailed understanding of this disease and its management, as well as based upon a personal knowledge of their patient’s self-management practices. In short, they are best positioned to opine on whether the patient is actually spending the minimum of 14 hours per week on applicable activities, as the clinician is certifying. To question the accuracy of a certification is to question the knowledge and/or integrity of the certifying clinician.

T1D – as do other so-called ‘chronic’ illnesses – takes a toll not only on the person who has the disease, but also on that person’s family – spouse, children, and parents.  In 2013 I began a textile art project that became an installation exhibited in the gallery space at the Lacombe Memorial Centre last year.  Included with this installation is my book, Mark on the Body: Honouring Those Who Live with Type 1 Diabetes.  This book remains available for purchase; all proceeds are divided between JDRF Canada and Diabetes Canada, organizations which support research into the cause(s), better treatment modalities, and hopes for both prevention and cure of T1D, and which provide education for those who live with this disease.  I enclose a copy and encourage you to read it so that you will have a first-hand account of the journey of a real family with a real person who lived with T1D and who died of it. 

Given all of the above information, and the personal experience of our family, I would ask you to intercede with Minister Lebouthillier to ask the staff at the CRA to:
1)   Follow the stated practice and guidelines required of the medical community, accept the certifications of medical professionals regarding their patient’s individual circumstances, and approve the applications for the DTC of Canadians with T1D who rightfully qualify.  This includes those who, if they wear an insulin pump to manage their disease, have that form of treatment included in the “14 hours a day” touted by the Minister in her interpretation of the legislation.
2)   If the CRA has taken a change in policy or standards affecting applications of adults with diabetes for the DTC, to engage in open and transparent stakeholder consultations and communications on the matter.

I thank you for taking the time to read and digest this information.  I will be forwarding a copy of this letter and my book to my MP, Mr. Calkins for his information as well.  I welcome the opportunity to have further communications on the issue of living with chronic illness, but particularly with T1D.

Yours truly,

(Mrs.) Margaret Blank

Cc.: Mr. Blaine Calkins, MP, Red Deer-Lacombe

Trying Once More

The Art Gallery of Grande Prairie
In a recent issue of the e-mail newsletter, Art Rubicon, there was a call for submissions from the Art Gallery of Grande Prairie.

And so...today I mailed a proposal package for Mark on the Body.

I've not given up on the Southern Alberta Art Gallery submission either; I was advised to wait at least six months from the date I sent it (June 20)...so perhaps I'll hear something by year-end.

And so it goes.

More when I have news...or not.  Thanks for your continued support!

Where to from Here?

The McMullen Gallery, affiliated with the University of Alberta, Edmonton, and its health sciences-related facilities, got back to me yesterday.

Another 'Thank you, but no.'

The initial e-mail gave a soup-to-nuts listing of possible reasons why:

We received a record 103 submissions this year, and 6 shows were selected...
 For your reference, the primary reasons for submissions not being accepted include:
  •  subject matter not suitable for the hospital environment;
  • amount of work is insufficient for the size of the gallery;
  • artwork lacks visual cohesion;
  • artwork is uneven stylistically and does not hold together as a unit;
  • group submission lacks a cohesive theme or quality among the works;
  • similar work has been selected for exhibitions in recent years;
  • the submission was incomplete.
Exhibit selections vary each year as the submissions change. You are welcome and encouraged to submit again next year. Our next deadline for submissions will be March 31, 2018.
Once again, thank you for your submission and for your interest in the Friends of University Hospitals' McMullen Gallery.

Well!  That wasn't particularly helpful...so I wrote back and asked for clarification.  I was correct in assuming that one problem with MOB was that it was too small (on its own) for the gallery space.  The gentleman who wrote (the Gallery's Manager, who is not part of the jury) confirmed this suspicion, and then outlined the apparent concerns with MOB.

One had to do with the quality of photos -- which were a a challenge because in order to show the exhibit in situ I had to submit photos that had been taken when it was up in Lacombe last fall.

But...the main problem with MOB?
The jury appreciated the story you shared, and your journey into art-making in such a trying time in life.  It is not that they didn't like the work. They certainly saw potential in the theme of honoring those with Type 1 Diabetes, they felt that the very literal imagery of the syringes and the stumps a bit jarring.   The jury does love to see proposals that highlight health-related themes, but it is tricky because some visuals can be difficult for patients.
This response is a mixed blessing.

On the one hand, MOB is intentionally jarring!  So clearly, I made my point for the jury -- but they didn't think the viewing public could handle it.

On the other hand, if a Gallery affiliated with a University which houses some of the finest research being done today into the cause(s), treatment, cure and prevention of Type 1 Diabetes isn't prepared to carry such an exhibit about what it's like to live with the disease, because it might upset people with the disease (who, by the by, already have a very clear idea of what they're up against), well then...where do I go from here?!

One application left -- in the hands of the Southern Alberta Art Gallery, which tells applicants from the outset that they will not receive a response unless it is a "yes".  I have no idea how long to hold my breath on that one.

Exhibition Update...

After a fashion.

A few weeks ago I heard from the Art Gallery of St. Albert, thus:

Dear Margaret,
I would like to thank you for submitting an exhibition proposal to our gallery.  Every year it is a privilege to see such a wide array of works created by diverse and unique artists working locally, nationally and internationally.
It is with regret that I must inform you that your submission has not been accepted for the 2018 exhibition year.  This spring our jury reviewed over 85 applications....due to our limited space we can only accept a handful of artists....


Ah well.  Not to be deterred, I have today written to thank AGSA for their consideration -- and packaged up a new submission for the Southern Alberta Art Gallery in Lethbridge.  I have yet to hear from the McMullen in Edmonton...but we shall see!

One step at a time!



Two More Donations

Though online sales of Mark on the Body have come to a stop, I continue to be surprised by the generosity of friends, family and complete strangers!

In January, a customer at The Crafty Lady in Lacombe -- the shop where I work part-time -- bought a book.  In February, another customer paid for a book but didn't take one -- concerned that is would frighten her 12-year-old, who has Type 1 Diabetes.  Both sales occurred when I was away from the shop, though, so I never got to speak to the donors in person.

In February as well, I heard from an old friend in Ontario and a cousin in my husband's family in B.C....and both purchased books as well as made donations well over and above the purchase price.  I was both touched and thrilled!

It means that today I was able to put in the mail cheques for $81.67 to each of the JDRF Canada and Diabetes Canada (formerly Canadian Diabetes Association) local offices!  This brings total funds raise thus far to $619.34!

I continue to be able to speak about the Project to people who come into the shop and see the book on display...and the Mary C. Moore Library in Lacombe continues to offer it for sale as well.  I am hoping to have copies available for purchase should I be juried into the Lacombe Art Show and Sale in April...

Meanwhile, I am preparing a 'trunk show' and talk about my work for a quilt guild in Camrose in April, which will include the Project, and I am preparing an application for the Southern Alberta Art Gallery in Lethbridge...

So we shall see what we shall see.  Meanwhile, I will continue to do what artists do...and what those who live with T1D do every day: put one foot in front of the other!

Till next time...

                          ..........................with a smile, eh?