3
Sep

It's been a while

It's been a long while, actually. 25 years to be exact.

I imagined I would spend this day just as I spend it every other year: angry, mostly, with a lot of sadness built in. Boy, was I pleasantly surprised.

I spent the day landscaping the front yard with the Hubs. It was almost 40° out, so a few hours out in the sweltering heat was pretty unpleasant.

The rest of my day was spent hanging out with my little guy. He turned 4 months old today!

I'm learning that it's hard to find time or motivation to be angry about something you can't change when you're at the centre of the world for this tiny, cuddly little boy who loves you so much and lights up every time you walk in the room. In a small(er than before) way I'm still devastated about my initial diagnosis, but today it seems like those feelings pale in comparison to the way I feel when I hang out with Husband and baby and remember that we made this family. I am so, so proud to have made it this far surrounded by so, so much love.

9
Aug

JDRF Research symposium, part 2

Aaaaand... part 2!

 

 

Dr Jan Dutz (UBC, Professor): stopping beta cell.destruction by dampening or blocking the autoimmune response

Jan Dutz; rheumatologist, dermatologist.

Psoriasis: for years researchers thoug hr this was a skin disease. Turns out it is an autoimmune diseases. Drugs and treatments use antibodies

Drug marketed for psoriasis followed patients treated with ustekinumab. Bc of the narrow therapeutic index , it is very effective at one specific thing. Thses drugs are safer than immunomodulators that used to be commonly used. Instead, these drugs block signals between "intruders" and other cells.

T1D study started about 5 years ago? Found that it was safe, no notable side effects.

Study was not designed to prove that ustekinumab ... was effective ijn t1d tmnt. Only designed to prove it was safe. As this safety study was in progress, the drug was also being studied for use in IBD and Crohn's.

Follow-up study will be starting within 6 months. If used early in disease, can we prevent islet cell loss in patients with T1D?

Next up:

Dr. James Shapiro: Human islet transplantation to reverse diabetes

Islet transplantation is considered fourth-line therapy bc of need for immuosuppressants.

Barrier to islet transplantation:

Shortage of donors!

Dr Shapiro is an incredible speaker. He packed an overwhelming amount of information into his 15-minute talk, most of which is too complex to summarize!

Dr Tim Kieffir, UBC prof:

Stem cells are amenable to large scale production.

Cured some mice:

Note my skepticism. While mice are an important part of testing any therapy, I can't bring myself to get excited about any researcher's ability to cure a NOD mouse.

Last presenter was Liz Ann Gillham-Eisen, Director, office of policy & Intn'l cooperation, Health Canada

What is regenerative medicine? Medicine to augment, replace, repair, or regenerate.

Latest federal budget had an emphasis on innovation in treatment technologies.

Investment into developing regulations:

Cell therapy meets the definition of a drug and is therefore regulated by health Canada. Most work in the "cell therapy" field is in the Investigational Cells category:

(CTO: Cells, tissues, & Organs)

CTO regulates homologous use, not autologous use (bc of risks associated with donors).

In keeping with true Canadian government standards, we of course have the obligatory translation on the next screen:

Wrapping up with the panel discussion and q&a with the second round of speakers:

Dr Shapiro answering a question on accessibility and affordability:

Cost is a major barrier. Small programs exist in Vancouver, Montreal, & Toronto, but these therapies are not widely available. Dr Shapiro noted that after Alberta Health cut off funding for non-Albertans, the remaining provinces also refused, which led to a reduction in patients accessing the treatments.

Dr Kowalski talked about JDRF International's fight for accessible insulin and tech treatments. JDRF International's focus here has been in the US, but they are branching out to Canada, Australia.

Federal government emphasized their commitment to drug affordability/accessibility. Takeaway from Liz's comment- the government is in the right space for this kind of progress; now it just needs to be brought forward.

Closing remarks came from Dr Nancy Tout, T1 parent and a JDRF Research Information volunteer, and Dr. Kowalski.

Dr Tout- the future is devices, ccell therapies, cure.

Dr Kowalski: outcomes beyond a1c. Time in range, quality of life metrics, etc. The benefits of hybrid closed-loop? Sleep, waking up in range. Huge important advances are coming in quality of life- what about devices that improve that but with no noticeable difference in a1c? Next hurdles would be highlighting the benefits of these systems.

The future is now.

9
Mar

JDRF Research symposium, Part 1: Tech!

Ok! I am way behind...abut 5 months, I think?

 

Either way, if you're interested in my interpretation of the conference, part 1 is below:

 

Dave Prowten, president and CEO of JDRF, gave opening remarks. These included a touching tribute to Dr. Bob Goldstein,

Next up was Dr. Cathy Parker from Health Canada.

- Symposium focus on digital health interventions

- Discussed HC mandates for access and affordability of services and devices

- Use the regulatory system as a facilitatator, not a barrier, to treatments.

Dr. Aaron Kowalski

Chief Mission Officer, JDRF

Dr. Aaron Kowalski

Dr. Aaron Kowalski

One part of Dr Kowalski's speech that struck me: "Despite significant advances, there remains an unmet need in T1D". He discussed the JDRF Research pipeline, including technology, the diy/openaps community, glucose-responsive insulin, restorative & immune therapies, beta cell replacement, and other topics that would be covered throughout the day.

Dr. Joseph Cafazzo, Associate prof at U of T: Use of digital health interventions to improve management of T1D

My takeaways:

- usability lab, where they test use and uptake of advanced features

- How do you enable closed-loop tech when there are technical and social barriers to their use?

- Advocating for open standards

- Nightscout, openaps LOOP, etc were featured in presentatioon.

- Industry needs to acknowledge that lack of interoperability hinders self-care

Dr. Courtney Lias, Director of of chemistry and toxicology devices, US FDA

Pathway to artificial pancreas:

Medtronic 670g is the only approved Automated Insulin Delivery device.

In the US, there are at least 7 companies developing new (mostly hybrid closed loop) algorithms.

Devices don't currently enable interchangeable use. Cgm developers need to look beyond individual MARD. Mismatch of data between services can lead to problems, including treatment errors. Interoperability is the ability of different components to communicate, exchange data, and use the data that has been exchanged. Intetoperability does not mandate the transmission of proprietary data.

Grant Kealey, Health Canada Scientific Evaluator, Medical Devices Bureau

The road to health Canada approval:

While informative, this segment of the presentation seemed very...govt.

Class 3 (pumps and sensors, BGMs) vs Class 4 medical devices (AEDs, closed-loop pump/cgms). Class 3 and 4 devices undergo rigorous scientific review to confirm device safety.

Artificial Pancreas history in Canada: Minimal 670g, now available in the states, has not applied for a Health Canada license application yet. Medtronic confirmed that they intend to submit in the near future.

Investigational testing in Canada:

Insulin pumps in Canada:

Licensing of pumps does not necessarily need a clinical study. Exceptions include new features, such as novel hypoglycemia reduction features or new cannula systems. Licensing of new sensors does require a clinical study.

Health Canada's talk was very careful to not discuss any openaps projects, even on the slide for innovation in devices:

How is HC positioned to review evolving diabetes devices?

Docs on new regulations for Software as a Medical device are expected to be posted for public consultation this summer.

Part 1 Panel:

*I didn't take notes on every question!

How do HC and FDA work together to approve devices (joint review process)? Short answer- they don't. Alignment of submissions is a

Pat Stewart, Director of medical device something. R2d2 reg approval of devices. Part of that is looking at relshp with foreign reviews. Each govt had their own regulatory framework. Indicated there is some fwd mkovement.

HC approvals for pediatrics: is it always a separate application?

HC would need a liceense amendment to add pediatric to their device usage. HC says it comes down to the availa polity of data to support review in pediatrics. Might lead to small delays in approval, but no significant delays.

Pushback from endos re: safety of data. Dr Joe C noted that most of these digital hjealth apps are fairly passive and are patient centred. Why should endos object to how a patient views their data?

Dr Kowalski took a different view. Looking at studies if the diy community, safety analyses, etc.

HC: Enhanced use of real-world elements. Freestyle libre was one example of a postmarket study. He cautioned that these postmarket coknsumer data studies aren't necessarily providing data that has been vetted (e.g., estimated sensor a1c in a study, vs actual lab a1cs).

What told do you see the regulator playing in Software as a Medical Device?

Most are Class 1, or not considered a Medical device at all. How to protect the public? Google Play and Apple are starting to police these types of apps.

Dr Kowalski : there are people with low IQs walking around dosing insulin daily, and they're not dying. They are not supported by data, but are dosing insulin. There is huge opportunity in data and decision support tools/apps. AK pointed out there is this fear of insulin, regulators are conservative in approvals bc of the danger, but people are using these drugs anyways. PWD seem to show we are being too conservative.

People still get hypos with the status quo. The Status quo is dangerous.

9
Mar

JDRF T1D Symposium: Bringing Research to Life

I'm attending a JDRF conference this morning. The focus is on research, whether treatment-based or cure research, for type 1.

I'll update as the morning progresses, but here's a quick snapshot of the first speakers they have lined up:

The agenda for the JDRF Research symposium, page 1

JDRF Research symposium agenda, pg 1

JDRF Research symposium agenda, page 2

JDRF Research symposium agenda pg 2

20
Nov

Hopes and frustrations

The "Cure Research for t1d" email blast today came with some disheartening news. MK-2640 has been cancelled due to "lack of efficacy."

Not familiar with MK-2640? It is was Merck's Smart Insulin. It has been going through a (slightly modified) phase-1 trial since early 2015.  Not much info seems to be available re: the failure if the drug.
I've been following MK-2640 with a sort of cautious optimism for a few years now. It seemed real and possible and worth investing a bit of hope.
Hope's a bitch sometimes, isn't it?

11
May

Another endocrinologist visit

My recent Endo appointment was a strange one. I grew up with disappointment and lectures every 4 months from my childhood endocrinologist, so I'm no stranger to the guilt and frustration that often follows one of these appointments. This time around was a bit different though.

When I visited the hospital a few weeks ago to have blood drawn, I had to renew my hospital card. The woman creating a new card for me asked if I wanted to sign up for My Chart, the Web service that allows patients to see lab results and clinic notes for all hospital services. Of course I signed up for the service, so a few days later I logged in and was able to see my lab results prior to actually seeing my doctor.

This a1c was better that my last few have been - significantly better. I hit a record for new lowest a1c! Needless to say, I went to that appointment feeling pretty pleased. It was unexpected, but certainly not unwelcome news.

At least -- not to me. Dr. A was less than impressed.

Maybe she was having an off day. Maybe she was seriously displeased and her demeanor was just her way of trying to remain restrained as she spoke to me about the dangers of having the kinds of lows I've been seeing lately. Either way, we reviewed my data and agreed that this lower a1c was likely the result of overnight lows that often went untreated.

She made a number of changes and sent me on my way. I left that appointment feeling as though I had been chastised for not acting sooner. She's not *wrong,* per se, but UGH. This feeling is deeply unsettling. Even now, a few weeks later, I feel like I've failed. I feel like treating mild lows with temp basals is inviting in a worse low (which is exactly what she was getting at), and I've been reprimanded and sent on my way to think about what I've done.

I spent more than a decade learning from my childhood endocrinologist the many ways I could disappoint a doctor, usually using the twin powers of disinterest and lack of effort. Matching that disappointment, but swapping the cause out for burnout and lack of action, is a strange and discouraging place to be. ESPECIALLY when this time around, I've actually been trying as hard as I can for better #s.

21
Aug

My first  (other) wedding! (and other concerns)

I attended my first big event as a married woman tonight.

I felt iffy, & checked leading up to the event. I got a 2.2 on a bg right before the bride walked.

Suspend.
Chug a glucagel.
Today is NOT  about me. Do NOT let this become a thing.

.

ChugAsMuch as possible.
More juice.

Today is not about me.

 

What do I have to do to not make a scene? Let's keep this quiet. Can I stand? Ok, we are standing. I am clapping. Good, time for sitting again. Why did I pick a seat on the end of an aisle? If I end up needing to suck back another pouch of liquid glucose, I am RIGHT in the line of their pictures. Let's  have less glucose and just try really hard not to be embarrassing until the ceremony's over.

 

**********************************************************************************

Post-wedding contemplation revealed that thoughts during the ceremony were all over the place. I had a pretty bad low minutes below it started, and it was bad enough that even the Husband was worried enough to debate marching us out of there. I'm not sure whether it was the heat (holy moly it was 30+ degrees) or the excitement of a friend's big day, but that low hit me hard.

 

There are some times where diabetes gets to be front-and-centre.

If it is acting up and requiring that I stop other activities in order to treat a high or low, I will respond. Definitely. Stop. Everything and Fix. It.
If it is life-threatening, on the other hand? That is a different issue. That is a recruit-the-troops, call in the friends, have backup people because I'm not sure I can take care of myself sort-of-situation.

In this case, a bg of 2.2 was leaving me feeling fairly incapacitated. My head was fuzzy and I was worried (very worried) about being able to stand in my 1.5" heels. I had my wonderful (and highly concerned) husband watching me very closely for signs that he needed to say "fuck this wedding, I might lose my wife" and call an ambulance.

 

Let it be known that I did not believe it would get to that point.

I have a feeling that he did think that it might get that bad. He knows I'm very sensitive to heat, so even when I think I'm in the clear, sommmmmmmmetimes the weather gets to me more than I expect.

I chugged a glucagel and suspended my pump. Not reassuring for him, I know, since my pump was also set to vibrate-mode during the wedding, which means that any additional low alerts would be evident to me but not to him.

 

This low brought me closer than lows usually do, but this one was not life-threatening.

With no action on my part, it would have been. Absolutely. No argument there. 2.2 on a hot day is going to get worse, maybe quickly.

did treat it though. I spent what I'm sure was a beautiful wedding entirely focused on breathing and maintaining my balance in my chair.

I'm part annoyed to admit that it was necessary, but proud to say that at least I did not fall out of my chair mid-ceremony. Thank goodness for small miracles?*

 

 

 

 

**********************************************************************************

*In case you're curious, it was a beautiful wedding. And a lovely evening altogether. :)!

6
Aug

Wedding day!

Today I marry the love of my life. I'm so excited to make promises and vows to this man who I love with all of my heart.

 

I can't imagine my life without him, and he tells me he loves me too -- broken pancreas and all.

 

(to be fair, I do have some good qualities that sort of offset the broken-pancreas stuff. I think.)

 

I feel like the luckiest girl alive <3

25
Nov

Emotional Eating with Diabetes (part 1)

I've started reading Ginger Vieira's book, so here is Part 1 of what I imagine will be a 2-part review:

 

The Likes:

The writing is extremely relatable. There is no technical jargon, and the author uses plain language to describe the cause-and-effect relationships that exist between things like overtreating lows/weight gain or self-worth/self-sabotage, to name a few.

The worksheets and blank spaces give a person room to make a commitment to follow through by putting their goals in writing. For some, this can be a useful tool.

 

The Dislikes:

There's really only one that I've noticed, and it's more of a personal reflection than a critique of the book or the author. The pointed truths about how diabetes can impact eating habits and relationships with food are not easy to digest. Uncomfortable truths are just that - uncomfortable, and honestly that pretty much sums up how I've been feeling about my relationship with food since I began reading. Hopefully this discomfort can serve as the impetus for change.

 

Remember I'm not all the way through just yet, so Part 2 will include my overall thoughts on the book as a whole.

22
Feb

Nancy says hi!

Hia. I am the bff. I am the sounding board for ideas. I am also the person who runs to mel with every single problem I ever have and expect full support. She is my person. And I am lost without her.

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