Blessed by the Potato

I had been off, away from the blog, working on a third edition of the Value of Simple (mostly struggling with how much I could excoriate certain robo-advisors for not listening to me before it became libel), and it’s been going very slowly. Instead, I accidentally wrote an entirely different book on, of all things, Curling.

How do you accidentally write a book??

Well, I ran a development league at the curling club. The idea was that we’d have a mix of experienced curlers and lot of new curlers, and it would be a home for those fresh out of our learn-to-curl programs. As part of that, I wrote a weekly email with a development tip to send around. And you know me, that wasn’t a short tip like “line up to the target before you get into the hack”, no, it was pages and pages with diagrams.

So by the end of the year I joked that if it felt like they had read a book from me, they weren’t too far off, all together those emails were almost book length. So of course a few people chip in with “you should make it an actual book!”

And, well, here we are.

What’s it called?

Curling for Beginners and Improvers. In a bold, highly unusual step for me, the branding and title are actually very descriptive of the book’s scope and target audience.

What is it about?

Curling! It’s a how-to guide (I seem to be building a specialty in that field) with a big focus on helping relatively new players. It was written in the first place as a supplement and extension to our 4-week learn to curl program, so includes the basics like how you deliver a stone, along with some discussion of common errors and why we do things the way we do. It includes a discussion of the theories behind directional sweeping, and a very light touch on strategy.

I know that the directional sweeping stuff in particular is something that is missing from the market — there are no books covering it yet, and even on YouTube there are precious few resources to help get newbies up to speed on the topic.

When is it coming out?

The release date is set for Oct 16th, to line up with the start of the curling season. With all of the tragedies of the last year, I had to squeeze all of the slack out of the publication timeline so there is a small chance the print edition may get pushed back if there’s a hiccup in the process (I’m expecting the ARCs to arrive any day now, and if there are mis-prints and I have to start over with the printer that will add delays). But e-books are finalized and available for pre-order, and I expect pre-orders for print editions to open up around Oct 1.

How does it compare to other books/resources out there?

I know I’m a bit of a weirdo when it comes to writing/publishing in that I do an environmental scan to make sure I’m actually filling a need and not just piling one more book out into the world (which if I ever decide to write fiction I will have to get all the way over), but I was surprised at how few curling books are out there. I know it’s a niche sport and all, but given how many dividend investing books are out there, I was surprised…

Anyway, What’s Your Call? only came out two years ago, and is entirely devoted to strategy. So I kept the strategy section fairly light and focused on the club-level, first-time skip.

Curling: Steps to Success would be the most similar competitor — that one and mine are both basically books on how to curl. It came out just before the directional sweeping effect was discovered, so doesn’t have anything about that in there. It’s a bit of a different voice — I’m more focused on the casual player/newbie, while Sean Turriff has more of a focus on turning you into a competitive player (so more on teambuilding and drills to do, mental performance issues, less time on the basics). Mine has more Star Trek references, which really is what people come to a curling book for is it not? His has more drills to use in practice sessions. Overall I think if you finished mine and wanted even more with a different voice (hearing/reading the same information different ways does help it sink in more) I would say that’s a good one to get next.

Curling for Dummies has the recognizable “for Dummies” branding, but is ancient (don’t be fooled by the 2020 release date that Amazon shows, it’s just a reprinting of the 2001 edition). It has a lot of non-how-to content that still holds up that I don’t bother getting into (like how the ice is maintained and where granite comes from), but the descriptions of the equipment and methods are (a lot, a little, respectively) out of date now. They do cover the no-lift delivery at least, but the idea of how to line up hadn’t quite matured to where we are today (it was still close enough to the transition from the old backswing delivery). The sweeping section teaches sweeping on a slider, which is how I learned but generally discouraged for beginners now.

Curl to Win is also out of date (it says it was published in 2009 but feels even older than Curling for Dummies, with Russ Howard’s anachronistic-even-for-the-time promotion of the backswing delivery, and anyway looks like it’s out of print now). I didn’t manage to finish Coleman’s books, which were more autobiography than guide (at least as far as I made it).

And that’s about it. It’s a pretty small field for books, which I was surprised by when people told me there was a need for such a book after I made the joke about the weekly emails. Even if my Curling for Beginners and Improvers and the other books on the market had perfectly overlapping scopes, there would probably still be room for it just to hear the info in different voices and approaches.

Of course the scopes aren’t perfectly overlapping: most of the other books also seem to split their focus on helping someone totally new to the sport while also including “become a champion!” type aspirational sections (and right in the title of some). I don’t know if that helps sell books, and maybe I’m missing out by limiting my focus. The simple fact is that I’ve taught hundreds of people in various learn to curl sessions, clinics, and special events, but coached/played zero national champions, so it’s simply not in my wheelhouse to talk about anything other than getting started in the sport and then getting a little better at the recreational level.

There are a bunch of non-book resources, too. Jamie Sinclair’s YouTube channel is terrific (if not quite structured for a start-from-scratch viewer — an advantage books still have). Matt Bean has a well-structured online course available. Both of those offer videos which can really complement written descriptions well, so be sure to check them out, too. For strategy, there’s resources like Chess on Ice.

Interesting, I’ve never heard of this “Curling” that you speak of.

The book is also for you. Curling is a sport that I love, and I try to share my joy in it with the reader, and help bring you along. It’s so inclusive because you can have multiple generations playing together in a single game, which also means it’s a sport that can keep you active for life. It meets you where your abilities and passions are: you can have people putting their all into it with incredible physical effort that spikes even an elite athlete’s heart rate to the top of their range, alongside people who are just trying to focus on the strategy aspect and keep their exercise to nothing more intense than a light walk.

Most importantly, the Canadian winters fly by when you’re curling every week.

I’m sold, where can I preorder it?

I will update this post when more options become available. For now, the e-book is available for pre-order at ~all of the major e-book retailers. And many of them are offering a pre-order discount! You can also pre-order a print copy through my Value of Simple store (yes, set up for a totally different book) — note that those can only be shipped within Canada, but if you want it signed I can do that (though honestly, defacing the book like that will probably only decrease its value).

Pre-order the e-book from Amazon Canada or Amazon US (rest of the world should get taken to their country from the US link) if you have a Kindle reader.

Pre-order the e-book from Rakuten Kobo, Google Play, or Smashwords, Apple, or many other retailers if you have a Kobo, android tablet, or other device that you don’t want to go to Amazon for.

Should I sign up for curling now?

Yes! Most clubs are accepting registrations for new members right now (September, if you’re reading this later), go ahead and sign up if you’re interested in curling, take their learn-to-curl clinic, and the book will come out in time to help supplement those on-ice lessons. Or just sign up and hope with the book and some YouTube videos you’ll figure it out in time. It’s fun.

I see you have a “blog” section on the site for the book. Are you transitioning into a curling blogger?

No, that’s to put up a few posts talking about the book and the writing process, and to act as an “errata” section for any errors or changes that may be needed (e.g., if an academic study in the future debunks one of the competing theories on directional sweeping, that’s where the update will go). I’ve got a few little teaser posts scheduled leading up to the book’s release, including one talking about the behind-the-scenes editorial decisions and the scope I decided the book should have.

So for example, Curling for Dummies is roughly twice as long as Curling for Beginners and Improvers. It’s not because CfD has that much more information on how to curl — I haven’t done a quantitative word count comparison but I’d estimate it’s actually got a little less on delivery and a lot less on sweeping. It’s because CfD’s scope includes so much extra stuff that I thought was unnecessary: a history of the sport (yawn), a description of how curling ice is made and maintained (cool, but not something the average player needs or likely wants to know — the equivalent of including a chapter on Zambonis in a book on hockey or a chapter on lawnmowers in a book on golf), a bunch of “top 10” lists, most of which aged like milk, a section on becoming a coach yourself… you quickly get a lot of pages that, IMHO, weren’t relevant to the core purpose of the book. Anyway, discussing those decisions is that post.

I plan to put up some bonus content (e.g., a chapter that I cut that I was really on the fence about keeping in there), a bit more behind-the-scenes info, and then the page will be mostly a static sales page for the book.

Seriously now, how do you accidentally write a book? Like, how exactly did this go from a bunch of emails to a coherent book?

That is the topic of another blog post on the new site.

In brief, I made the joke about my emails being so long that I had basically forced everyone to read something close to a book by the end of the year. And some people encouraged me to make it an actual book.

Even with a lot of words written, it was a bunch of tip-of-the-week things — I had a few that chained together more coherently for a broader topic, but before it could become a book nearly all of it needed to be restructured and anchored to some coherent order. Plus some of it was stuff specific to our curling club (like how to find a spare, information about our other leagues, etc.), which didn’t make sense to keep. I had to create a detailed outline of everything I’d want a book for new and developing curlers to learn.

Oh, and I had to do it fast — that joke was in my end of season message, so if I wanted to shoot any photos on ice, I had to get to it ASAP before the ice was all gone. The original emails had a bunch of good-enough-for-an-email pictures and illustrations, including pictures I may not have had copyright to, a bunch of figures mocked up by freehanding in MS Paint (one of which I kept in the book because it was cute and to be able to show where this all started). So I worked feverishly, got an outline hammered out, then listed all the photos and poses I might possibly need for every chapter, then got to shooting with Alexis, the book’s official photographer (and it’s partly her fault — I asked her if trying to turn all the tips into a book was a dumb idea and she was actually supportive so she got dragged into the project).

In the end, we had a bunch of new photos and I created many new figures (or re-made them but cleaner). The tips had to be extensively re-written, and a bunch of new ones added — just under half of the word count is new stuff that was missing from the original set of tips. Once the ice was out I spent the early summer writing and re-writing (and thankfully finished before the serial tragedies started hitting).

I know, it’s a bad sign when half of a blog’s recent posts page consists of “not-dead” posts, but it’s been a hell of a year. Here’s a quick recap of the woes, which I will promptly bury with something completely different.

So first off, we got kicked out of our house. It’s explicitly a risk that renters have to accept in the rent-vs-buy debate, but it still sucks when a risk is realized and slapping you in the face. It was extra sucky because our landlords decided to tell us that they were moving in in mid-August. They gave us much more than the minimum notice, saying we could stay until the new year… but that would mean Blueberry would have had to switch schools mid-year. We were under some pressure to not only move against our will, but to do so on an extremely tight timeline.

It was extra super-duper sucky timing because we had looked at a place in the maternal grandparents’ neighbourhood just a week or so before and passed on it, largely because we didn’t want to have an unnecessary move. If we had known a week early we would have jumped all over that place. Grr.

So we hustled and bustled to find a new place in a matter of weeks. Holy crap were some of the houses in complete shambles. One we were sure was possessed it was so grungy and grimy and gross feeling that it had to be the work of the supernatural. We did manage to get a lease on the last possible day to register for a new school year, and even that was crazy. I don’t know how realtors managed to sneak their greasy incompetent mittens into the leasing world, but they did, and we had to go through this realtor who knew nothing rather than being able to talk to the landlord directly until after we had been approved to sign a lease. Then the lease was some legal shambles spewed out by someone who clearly had no idea how leases work, with weird illegal, illogical clauses inserted. The biggest one being a clause that gave the landlord a rescission right for a number of days to check our credit. The landlord can absolutely check our credit, and we provided an invasive amount of information to let him do that… but that happens before signing the lease. Even if you allow for the idea of a conditional period to check in on credit, the clause was written so that the lease would be self-cancelling if he didn’t proactively provide a written notice of his approval, with the rescission period extending well into the period where we would have moved in. Let alone legality, it makes no common sense to have a lease self-immolate because a landlord forgot to send an email long after a tenant had already moved in. And then going through what felt like 10 different people to get that fixed (when Ontario has a standard lease template anyway!).

Whatever, it all sucked tremendously. Then the actual effort of packing and moving, which also sucked. But we’re here now.

And I skipped a step, this was preceded by moving my mom into a facility that was better able to care for her, so lots of work and effort there (and lots of thoughts to come on that). Then after packing up and moving our place, it was time to pack up and clear out mom’s place, and list it for sale in one of the slowest markets the GTA has seen this millennium.

So that was a big part of the fall/winter/spring I was away from the blog. Then comes this summer. I had called 2022 “the summer of suck” and 2024 was another contender for the title. To just rapid-fire out the news in one long paragraph, we went on a family road trip out East (so far so good), to the Potato holy land. The first day we arrived, it was unseasonably cold and the heat and hot water weren’t working. It was a dumb, simple to fix thing in the end (there are like 4 different emergency shut-offs for the power, gas, and water feeding the furnace and hot water heater, included one outside, and whoever had winterized my parents’ place had redundancy/paranoia in mind and had flipped them all) but took all of the first night and then all of the second day to go through all the troubleshooting steps to figure it out and get it working again. I thought that was going to be my big “ha-ha bad luck vacation story” but then the next day one of my aunts on my dad’s side got a sudden and severe case of pneumonia and had to go to the hospital, and died a few days later. On my mom’s side of the family, one of my uncles was struggling with some weird symptoms for a little while, and found out it was a super-aggressive brain cancer. He died barely a month after finally getting a diagnosis. And my mom had a bad, bad accident, rolling her wheelchair down a flight of stairs, ending up in a coma for a week and has been in the hospital for almost two months now (though is now in stable condition).

Anyway, I will bury this bad news post with another post right away, but some other rapid-fire updates:

• I hate hate hate the new WordPress. I haven’t figured out how to make some equivalent of a classic editor plug-in work, but having to add a “new block” for every paragraph disrupts writing so much, and it creates so many ways for me to screw up the layout. I had to set up a new site from scratch and even though I’ve built like 6 or so sites on my own and worked on quite a number of other ones, I just kept getting stymied by this new approach to writing and design that they’ve taken on. The new site is live now (see next post!) and is reasonably ok-ish but I just can’t figure out how to tighten up the layout any more or add the elements I want to and I give up at this point, it’s good enough for people to get what they need out of it. But way harder than previous versions of WordPress, and seems to be actively hostile to users doing anything (even changing the stock photos in a pre-designed theme seemed to break things!). Zero stars.
• I also haven’t posted on The Bird Site since the take-over, though I’ll probably go on it to promote the next post. I tried setting up an account on Threads with my usual username, and was instantly banned before I even posted anything — apparently holypotato is hate speech in Meta’s eyes? Anyway, the community on Threads appears to be more vibrant than Mastodon, but I’m still trying to figure out how to use it (esp. as it seems more mobile-oriented, so my ancient desktop-based brain can’t even figure out how to link you to my profile [oh there it goes]). Anyway, after my first round of being insta-banned I now have the oh-so-catchy handle of valueofsimpleca.
• In the various house moves, I inherited my sister’s Peloton. Though the membership isn’t cheap, it is actually motivating me to “sweat every day” so yay for small health wins? There is some kind of social aspect to Peloton that, to echo a point from above, my ancient desktop-based brain has not figured out yet. I have #curling on my profile if that helps make friends?
• I’ve made very little progress on the third edition of the Value of Simple. Instead, I wrote an entirely different book (see next post!). But the third edition is still on my (very long, very slow to clear) to-do list!

My laptop is 6 years old now, and I got it at just the right time: USB-C was new, so it has USB-C ports, and can charge from a universal USB-C power supply, but also has regular USB-3 ports and headphone jack. My dad got a laptop from the same line but a few years newer, and it only has USB-C, which meant dongles. Dongles everywhere. The new thing is not always ready for prime-time.

A big driver of the price protection troubles I had in getting my new Escape PHEV was that the build delays pushed it to a new model year. And Ford did a mid-cycle refresh of the Escape for 2023, so the 2022 model I test drove and ordered isn’t quite what I received. And the new things are not necessarily ready for prime time.

The 2023 has a larger centre touchscreen, at the expense of almost all the physical buttons. And it feels like that USB-C only laptop with its attendant cloud of dongles — it’s supposed to be new and futuristic but just feels like a janky human factors nightmare, and makes me wish I had the slightly older version.

One of the big set of physical buttons to get removed was for the climate control. Now all of that: fans, A/C, temperature, defrost, seat heaters, etc. is controlled from the central touch screen. And one question I never saw any of the reviews of the new model answer was does the touchscreen work with gloves? I can say that it does not. They did put in one physical button for “max defrost” which may help if you have gloves (or if cold fingers also don’t operate the touchscreen) to get some heat flowing. And with the heated steering wheel I may never wear gloves to drive again… but still, I’d much rather have physical buttons that work in all kinds of conditions by touch alone for some of these basic functions. On the bright side, the climate control buttons are locked to the bottom of the touchscreen so you can always find them. They also set the touch control up so that once you touch a control you can slide up or down anywhere (so if your finger wanders on a diagonal after you touch temperature or fan speed, you can just go vaguely up or vaguely down and it will still register as up or down, you don’t have to go perfectly up). It’s also possible to do some things through voice control, though so far I’ve only successfully changed the temperature set point but haven’t figured out how to change the fan speed (it may not be an option — the manual only has changing the temperature in its list of example voice commands).

The touchscreen also requires a surprising number of steps to get to frequently accessed functions. If I’m picking a drive mode (EV now, for instance, which you have to pick every time you start the car if you want something other than EV-auto), to then turn the radio on I have to go home, then sources, then pick radio/Sirius/android auto. And go back I think all that way again if I’m in Android Auto and want to go back to the radio. Though there is a shortcut icon for Android Auto across all screens so going in that direction is fast (just not back to the radio or to drive mode).

Android Auto works like a dream, though. I have a set of wireless earbuds (which I had to get because new phones don’t have headphone jacks), and it’s so frustrating to use them. They connect by bluetooth automatically when they come out the case, which is great… but for some reason you can play music with them but the podcast app can’t find them until Bluetooth has been cycled on and off a few times. Makes no damned sense. Anyway, so far this is not like that — as soon as I’m in the car, my phone connects. It will automatically start playing the music from my phone, over-riding the radio (which I don’t always want, but it’s fast at doing it). I successfully got it to read me a text message and let me compose one by voice, which I’ve had a heck of a time doing with the phone itself in my old car (using the phone’s built-in speaker, as it only used the car’s bluetooth for calls before).

Of course the big reason to get it was to have an EV. And so far, that part works, at least on the car’s side. Even in EV auto I’ve been able to drive around in pleasant June temperatures without the engine ever coming on. However, I’ve tried charging three times now, and each time the cable has given ground fault warnings and shut off several times, and I don’t know if that’s a problem with the outlet by my driveway or the cable itself. After ~5 repeats of unplugging and starting over it worked each time to start charging, so who knows. Today, I came out to the cord again flashing error codes (this time about over-heating), but the battery had charged to 97% overnight anyway so maybe that’s a non-issue. We managed to go ~40 km in near-perfect conditions for EV range, and still had ~23% battery left when getting back home.

On EV mode, it has enough power to do a normal highway on-ramp and merge ~90-100 km/h. If it needs more it can kick on the gas engine, but so far I haven’t had enough open lane in Toronto traffic to see it do that. For comparison, the Gen3 Prius was not exactly a sports car, but had just enough power to get around (officially ~10.5 s to 100 km/h). So on those same on-ramps with near-full EV mode, I’d be around the top of the Prius power meter (which topped out below what the car could actually do, maybe ~75-80% of full power, but you could keep pushing it beyond what the power meter showed), which is where most of my driving in the Prius ended up. Every now and then we’d have to push the pedal to the medal for a short on-ramp with fast traffic and we’d chant “Go Prius Go!” so if we got into that kind of situation, the Escape’s gas engine would kick in to give us the extra power and then some (~9.2 s for the 0-100 km/h test).

The 3rd Gen Prius had a lot of things going for it that were weird and quirky, but I wish had been taken up by other carmakers and other Toyota models. The high-centre instrument cluster looks super weird when you first get in, largely because no other cars work that way. There is nothing hidden behind the steering wheel in the Prius. But that placement means you don’t have to move your eyes off the road as much to check your speed, etc. It also means the focal distance doesn’t change as much, which as my eyes get older I was starting to appreciate. And the Prius made the effective focal distance even longer by having the actual display under the dash and then reflected off a mirror to the driver’s eyes.

With the Escape, I opted for the fancy technology package to get their heads-up display. It reminds me of Chuck Yeager, a little pane of glass that pops up, and the speed and navigation info is reflected off of it so it appears just on the edge of the hood. That’s better than having to look down through the steering wheel, but is a lot of moving parts and can be washed out in certain light conditions. Plus the speed is not displayed as large as I’d personally prefer, even on the largest setting. I think it would have been cheaper and just as functional if they had just adopted the Prius’ quirky dash (though even the Prius abandoned that concept with the 5th gen redesign that just came out). I’m also not sure why they have all the moving parts (the little pane of glass goes back into the dashboard and is covered when the car is off) when they could just reflect directly off the windshield (which Toyota does in the Rav4 and 4th Gen Prius).

The Prius also had some high-design element to the plain-looking plastic dash that Toyota never really advertised, and I wish I had thought to take a picture of before I sold it. The dash looked like just a big curved piece of plastic, as dull as an efficient driving appliance can be. But it had tiny finger-print like patterns on the surface, which I credit for its incredible anti-reflection/glare properties (but it may have been the material or the larger curve or something else). If you wore polarized sunglasses, the Prius dash was completely black, it was like magic. Even in bright sun, while there was some reflection or glare on the windshield, it was way less than any other car I’ve ever driven. The Escape’s dash is just average in terms of glare.

One good thing about the 2023 redesign is the colour choices for the seats and dash elements. The 2022 had only one choice if you got the package with the HUD, a black seat with two big tan patches on the seat and backrest, with a birch-like woodgrain strip across the dash. The new “space grey” seats look much better, and while there’s still a strip with woodgrain texture, it’s also “space grey” and blends into the whole look much better.

Anyway, some pros, some cons, but as much as I’m annoyed by having to pay more than expected for the Escape, I’m happy with the big parts in terms of how it drives and how the EV mode works (though I’ve got to try someone else’s outlets to see what’s going on with those error messages).

[Let’s just skip the part where I’ve been AWOL for practically a whole year, I honestly can’t believe I missed that much time and I’ll catch you up on the continued suckitude later]

On the car question, I last left you with this post on the decision. I did indeed wait until the spring, and ordered a Ford Escape PHEV in April of 2022.

It took way longer than the 6-8 months we were told to expect, and in October of 2022 Ford made the call that they wouldn’t get some of the 2022 orders built before the roll-over to the 2023 model year. So my dealer rolled my order over — I had to go in and confirm the colour choices. I only had one question “I’m still price protected, right? I’m in no hurry, so you guys could build it as a 2024 for all I care as long as I still get the 2022 price.” “Yes, it’s price protected” my salesperson said — but I unfortunately didn’t get that in writing.

Finally after 13 months my Escape PHEV arrived at the dealer.

That was a month ago. It sat there for a week while we waited for the one guy who can appraise a trade-in to be on-site, and then I brought my Prius in for him to look at. They offered 1/3 of what it’s worth (and I’m not talking private market sale — I had an two offers from dealers that were ~3X what Ford offered). So whatever, I won’t do a trade-in, just a straight-up purchase of the car I ordered, and sell the Prius separately. Then they needed some more time to figure out what the price actually was, because there was supposed to be price protection on my order, and Ford had gone through several cycles of price hikes in the prior 13 months.

Finally they get back to me with a number… and it’s ~$3600 +tax more than we agreed to when I ordered the car in April of 2022. I simply said “isn’t this supposed be price protected? Here’s a copy of the yellow order sheet I signed, showing the price comes to [price].” They said oh yeah, there is supposed to be price protection, that’s long been Ford’s policy, we’ll call them and get back to you.

Weeks have gone by since. For various reasons, Ford didn’t get back to them, or the manager was out of the office, or they can’t find the adjustment in the system. It’s now a full month since my Escape arrived from the factory and I still don’t have it — they still think I have to pay $3600 (+tax!) more because that’s what the system shows, which is price protection back to the time the order rolled over to a 2023 model, but not back to when I ordered it.

I’ve called Ford’s customer support line, but they said they can’t help and anything to do with orders has to go through the dealer. I’ve tried Tweeting at them with no reply yet.

I’m sympathetic to the dealer here — Ford was the one who took more orders than they could make and/or fell behind on production, so it’s up to them to honour the price. And it seems from what little I can see on the outside that there is a system to do that automatically, but it’s not set up for orders that span model years. But I’m the customer, it shouldn’t be this hard/take this long/be up to me to try to publicly shame Ford into sorting this out (as one forum user put it, “Not your circus, not your clowns”) — the dealer and the manufacturer should be able to sort this out invisibly behind the scenes. Ford had my order in hand in April of 2022, and closed new orders not too long after. They had all summer and fall to get parts for the backlog of PHEVs and hybrids. It was probably only a few days worth of production that ended up rolling over like mine (AFAIK, all gas-only orders got built as 2022s), so they should have just extended the run until those orders were filled, rather than stopping production in November of 2022 to roll over to the 2023 model (which was plagued by start-up problems and didn’t really get moving until March of 2023).

But while it’s shitty customer service that led to this situation, this is where we are. So, dear readers (those of you who are left), it looks like I’m faced with a dilemma. I’m being asked to pay ~$3600 +tax more than I expected or agreed to (or about 8% more), after the adjustment. I’m angry about that. But walking away only helps the dealer: they can sell it for several thousand more (the adjustment that is there plus likely a mark-up because people who don’t want to wait for a plug-in will pay it).

And there aren’t really any other options, other than continuing to drive the 2010 Prius into the ground. I dislike Toyota’s redesign of the Prius, and the Rav4 Prime is sold out through to the end of its production run. Any alternative involves paying even more and likely waiting another few years just because of where the car market is now.

So on the one hand, walking away doesn’t seem to be a very viable option. Plus there’s the risk they’d keep my deposit — I should get my deposit back given how easily they’ll resell it and that I have a good reason for walking, but you never know.

On the other, part of why I was going to pay up for a new car is the joy of the experience, and that’s going to be tainted by these shenanigans now. Whenever someone asks me about my new Escape for the next few years, I won’t be gushing “oh yes, I do over 90% of my driving completely on electric!” or “check out the heads-up display!” or whatever, I’ll be going “eh, it does the job, but Ford screwed me out of four thousand bucks for the privilege of waiting longer through their production screw-ups so I can’t exactly recommend one.”

Anyway, after letting the blog lie fallow for so long I doubt anyone is going to read this before I just accept this situation and go close the deal on the car, but I welcome any comments below.

Update: I paid the extra and picked the Escape up.

It’s rare disease day, so let’s look back on TTP, the rare disease that Wayfare had/has.

Thrombotic Thrombocytopenia Purpura

The tense is hard with TTP. It’s a sudden, short-term, life-threatening blood disorder. But even once the antibodies retreat as mysteriously as they appeared and the platelet count goes back to normal, it’s never really gone. There’s a good chance a survivor received organ damage from the clots or bleeding during a TTP attack, which may manifest as brain, kidney, liver, or heart damage — or just about anything else.

But beyond that, there’s the fear that it will come back. Roughly half of patients will at some point have another TTP attack, each of which carries with it a risk of dying during the episode, and accumulating more permanent organ damage and disabilities.

Wayfare essentially has PTSD from her rare disease. It took over a week and several visits to urgent care and the hospital before her TTP was finally diagnosed correctly and treatment started. By that point, she had so few platelets remaining that they had to call a vascular surgeon in to the ICU to do a cut-down on her leg to access a vein. They couldn’t run a central line because if it happened to bleed, she’d bleed out before they could stop it. In the leg at least they had the option of sacrificing the leg and tourniquetting it if the line went poorly.

We can’t afford to wait that long if she has a relapse, but the first signs of a potential relapse are fairly every-day occurrences. So any headache, any mysterious bruise (or one with a known cause that doesn’t look to be healing fast enough), any splotching on the skin, any time she feels maybe more tired than normal… these are all potential medical emergencies and we have to get her blood taken. Every few months we are off to the blood lab on short notice, or sometimes straight to the hospital to check.

Fortunately, there’s a new drug available that can help. She was part of the clinical trial, and was out of the hospital weeks sooner than they had predicted when she went in. Who knows how bad the strokes may have been if she hadn’t got it?

In Which Potato Learns How Drugs are Approved

Being in medical research, but not drug development itself, I thought I had an above-average idea of how drugs get to patients: Someone has an idea, it goes through pre-clinical testing, then clinical trials (Phases 1, 2, and 3) then reviewed by Health Canada, then ta-da, new drug on the market!

Caplacizumab went through all that. It’s safe and effective. Health Canada approved it. But TTP patients in Canada still can’t get it.

We can’t even choose to pay out of pocket for it.

There’s one more critical step: the drug has to make it onto a provincial formulary, the listing of drugs available for purchase somewhere in the province.

A big influence there is CADTH, which makes a cost-benefit analysis. In our case, they decided to recommend against caplacizumab, which as someone with expertise in a related field, who’s done a lot of reading into TTP for obvious reasons, I cannot understand why. Nearly every other nation that’s completed their equivalent review has approved it — if Wayfare gets sick again, we may be best served by putting her on a flight to the US or UK, ’cause their patients can get caplacizumab.

Reading their report, they seem to have mis-understood the feedback patients sent in, saying that we were concerned about the risk of a relapse but the clinical trial didn’t address that question. The subtext is that the company is welcome to fund another clinical trial to answer that question, after which CADTH may re-visit the decision. But that’s insane, no company is going to do that for a rare disease, especially for a tiny country like Canada if the big countries have already approved it!

And that isn’t the point we were making! The point is that caplacizumab works. It works to stop the early disease process where the platelets are forming tiny clots just fucking everywhere and ruining your very best brain tissue and nephrons. It gives you time for the conventional therapy (plasma exchange) to do its job and clear the bad antibodies that kicked the whole cascade off. It gets people out of hospital sooner and with fewer long-term disabilities.

And not just the first time. Half of TTP patients will have a relapse. Some of them have multiple relapses per year. Every time they relapse, they run that permanent organ damage and disability gauntlet: will it be a stroke this time? Will they lose a kidney? Will it affect their energy levels a little, or will everything get all scrambled so much they put the sugar in the coffee maker and the coffee in the cup in the mornings and just cry about how awful their coffee is, unable to make the connection about how to fix the problem?

We wanted them to consider that these risks don’t hit TTP patients just once, they’re a risk every relapse. Cutting those risks down by some significant percentage (the exact number would need more trials but the anecdotal evidence suggests it’s somewhere in the 50+% range) is huge if you have to face that risk over and over again — it compounds. A 10% risk of disability with each attack becomes a 40% chance after 5 relapses. Cutting just 5 percentage points off that risk doesn’t sound like a big deal when you only consider the initial attack in the cost-benefit analysis, but after a few years that’s half as many TTP survivors with a disability.

And more than the hard economics of the cost-benefit analysis: nobody out there knows if they might get TTP. It’s super-rare, you may not have heard about it before now. But once you’ve had your first attack, you live with that constant fear that you might be one of the unlucky ~50% who will have a relapse. You live with PTSD, the constant triggers that any little every day thing might be the first sign of a relapse. Knowing caplacizumab is there to improve your odds if you do relapse would be a huge mental benefit even if you never actually need the drug yourself.

The other side of the cost-benefit was also hard to understand: it’s a niche, antibody-based drug, so it’s somewhat expensive, yes. But it’s not like a take every day forever kind of drug, more like an epi-pen: an emergency rescue medication taken during an acute episode to help buy time for other treatments to work, saving lives and tissue in the process.

Political Action

Right now, the patient group Answering TTP is sending a letter to some of the provincial leaders. It’s still possible for these leaders to choose to make caplacizumab available in their province — CADTH’s report is a recommendation only, it is ultimately a province-by-province decision.

Rare disease day doesn’t just have to be about awareness, we can also help improve treatment with a small step of getting a Health Canada-approved drug for a rare disease into the hands of the Canadian patients who need it.

So please, fire off an email to your province’s health minister, and CC your MPP. Or tweet at them and tell them CADTH made a whoopsie, it happens, but maybe they can go ahead and add caplacizumab to their formulary this rare disease day.

Thanks in advance from me.

Nitpicking

Screw it, I’m clearly never getting a job at CADTH, let’s burn some bridges and nitpick that CADTH report to show you why I just don’t get why this wasn’t instantly approved and lauded as a modern medical marvel!

“During the overall study period, a statistically significantly (P = 0.0004) lower percentage of patients in the caplacizumab group (nine patients; 12.7%) compared to the placebo group (28 patients; 38.4%) experienced recurrence of aTTP…”

Holy fucking shit, how is this not approved on that alone?!?! Yes, above I focused so much on the part they missed, about reducing the risk associated with each relapse, but it also pretty convincingly reduced the risk of relapses themselves in a statistically significant way!

“The submitted price of caplacizumab is $6,200 per 11 mg dose. Assuming 37.2 days of therapy (i.e., the mean exposure to caplacizumab for patients in the active treatment group of the HERCULES trial; the reported maximum was 65 days), the cost of caplacizumab for an aTTP episode is $236,840 per patient…”

That’s the worst-case cost. And like in many clinical trials, they didn’t really know what dosing regimen to use. I would place a sizeable bet that caplacizumab would give almost all of the benefits in a 10-day course costing just $62,000. The mechanism of action strongly suggests to me that it works best early on, and the anecdotes from other patients we’ve heard of include many dramatic turn-arounds in the first week or so. But if you’re running a clinical trial you’re not going to take a chance on that, you’re going to flood the study participants with the medication and be sure it works, and do some real-world evidence gathering to fine-tune the dosage later. More to the point, if Wayfare had a recurrence, she would instantly pay $62,000 out of pocket to get a 10-day course of caplacizumab… if it were available to Canadian patients to purchase in the first place. But CADTH only considered the all-or-nothing case of using the same dosing regimen as the clinical trial.

Indeed, the real-world experience in the UK is that they are tapering down the dosing regimen, stopping when levels are normalized, rather than continuing all the way through plasma exchange. A few years ago their average days of use was already down to ~30, and is likely lower now (as a non-expert pointing to the outfield, I tell ya, 10 days).