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My first clinical trial: a thread
10 years ago, diagnosed with type one diabetes ( #T1D) six months prior, a hopeful me nervously ventured up to Yale with my mom to try an experimental medication called Teplizumab to try to slow the destruction of the beta cells in my pancreas.
10 years ago, diagnosed with type one diabetes ( #T1D) six months prior, a hopeful me nervously ventured up to Yale with my mom to try an experimental medication called Teplizumab to try to slow the destruction of the beta cells in my pancreas.
10 years later (yesterday!), Teplizumab was submitted to the FDA for approval. It's been shown to delay the onset of T1D for ALMOST THREE YEARS!
It's crazy to me that Teplizumab was legit, but in any case, now seems like a great time to share my Teplizumab story.
It's crazy to me that Teplizumab was legit, but in any case, now seems like a great time to share my Teplizumab story.
Quick note: T1D = type one diabetes. T1D is a chronic autoimmune disease, occurring when your immune system mistakenly starts destroying your insulin-producing beta cells. People with T1D must inject insulin basically forever.
With new technologies and A TON of diligence, accurate guesswork, and accrued experience, people with T1D can live happy, healthy, and fulfilling lives like anyone else.
Teplizumab is significant because it can slow down the destruction of the beta cells, which in turn makes intensive diabetes management either not necessary (temporarily) or a lot easier!
So I'm here today to share the story of the craziest two years of my life, during which I traveled to Connecticut so many times I got to know the TSA agents who were always patting down my insulin pump in the airport by the second year. Oh, and I received Teplizumab.
This story doesn't actually start with me getting Teplizumab, because a lot happened before that. So let's go back to Dec 2009, which was right when I hit 4 months of T1D and was also when I had T1D long enough to be considered for this particular study.
Of course, afterwards, they also tested Teplizumab on people who have antibodies indicating they might develop T1D. But this study was for newly diagnosed people with T1D, who had had it for 4-12 months.
So one snowy Connecticut evening, my mom and I drove to New Haven, where Yale is. The next day I had my screening visit, a key part of which was the Mixed-Meal Tolerance Test (something I'd become very familiar with over the next two years).
Now what's an MMTT, you say? Well basically, they want to see how your body reacts in a controlled environment to eating carbs. It's a way to see if your pancreas is still producing any insulin, because with T1D, that means there's still some beta cell function to be saved.
These carbs were not something tasty, like pancakes. I got a carefully calculated quantity of Boost protein shake, a "delicious," tan concoction that probably wouldn't stain your khaki pants if you spilled it because it's the same color and tastes about as bad.
Even without getting the results of the bloodwork back, this test was exciting, in a sense. My blood sugar went low before the end of the four hours of the test and without having taken insulin specifically for the protein shake.
So clearly, but not surprising (look up the honeymoon phase in T1D, if you're curious), my beta cells weren't all gone. After all the bloodwork and other checks were said and done, I qualified for the study! Next stop: return to Connecticut for two weeks (!) in January.
After the end of the MMTT, the nurse suggested that we go get lunch at a local pizzeria. You might be surprised to hear that New Haven is full of (a)pizza restaurants, most of which are very good.
And return in January I would, with my schoolwork because thankfully my school and teachers at the time were incredibly supportive of my participation in the study.
The study was also double-blind, so I wouldn't know until many months later whether I got Teplizumab or a placebo (saline). Teplizumab also has a very common and noticeable side effect: an itchy rash all over your body.
As I mentioned, the infusion of Teplizumab took place daily over a two-week period. The routine went something like this: arrive at Yale New Haven Hospital in the morning, get an IV in my arm, get some blood tests, wait for the results, and then (if all was well), infusion!
After the infusion, which took about 15 minutes or something, they'd monitor me for a little while and I could go home by 1 PM or so. I'd take benadryl every day to stave off the potential side effects, so I frequently fell asleep at various points.
Sitting in the hospital, I met quite a few visitors. Naturally, I have a couple favorites. The first was the nicest old woman who would come in and basically just ask how everything was going. The second was possibly (I don't remember) Arnold Kadish the inventor of the ...
insulin pump.
At the end of the day, we'd ask the staff for a pizza restaurant recommendation. If you're wondering, one of our favorites was Modern Apizza, and it still exists! http://modernapizza.com/
At the end of the day, we'd ask the staff for a pizza restaurant recommendation. If you're wondering, one of our favorites was Modern Apizza, and it still exists! http://modernapizza.com/
Naturally, in the beginning my biggest question was: am I getting the real thing or the placebo? The placebo was saline, which is notable because you can actually taste saline when it's injected through an IV (and they did that a lot anyways when they would flush the lines).
So, it was the first day of the study, and moments into the first infusion, I told my mom: I don't taste saline! At this point it was just hopeful optimism.
A few days later, my dad was coming up to Connecticut to trade places with my mom. Coincidentally, it was also my mom's birthday. We were waiting in a Ruby Tuesday by the airport for my dad to arrive when I noticed that I had an itchy rash on my legs.
This is, in fact, an occasion to celebrate an itchy rash on your legs! It meant I was almost certainly getting Teplizumab. We didn't know if it would do anything, but it was certain a beacon of hope.
The rest of the first two weeks progressed pretty smoothly. After a few days, my mom and I moved from a hotel into my dad's high school friend's family's house. In retrospect, them allowing us to stay there for so long was incredibly generous.
They had two kids, one of which was my age, as well as the sweetest bichon frise dog, named Sushi (Unfortunately, Sushi has since passed away. She is succeeded by Beau, who is literally the nicest poodle you've ever met.)
At the end of these first two weeks, we went back home, but not for long. As part of the study, we had to return periodically for checkups to see how I was doing. There were also 4 more MMTTs at 6 month intervals (to see how your insulin production was changing).
In MMTT's 2 (mid-2010) and 3 (Dec 2010), I was still going low before the end of the four hours (!), which in retrospect meant my pancreas was still producing insulin.
Also in Dec 2010, I started on my first insulin pump! That's seriously a whole other story, but it was a OneTouch Ping and served me well for 6 years.
Now, in January 2011, it was time for round 2 of teplizumab. This time, I was guaranteed to get teplizumab and not the placebo. By now, we'd fallen into a rhythm of traveling to Connecticut on a regular basis.
With the second infusions, the itchy rash remained, but the days in the hospital were slightly more eventful. It started off with a massive snowstorm in Connecticut, which was predicted to be so bad that my dad and I stayed overnight in the hospital in case the roads were bad,
to ensure I'd be able to keep up the daily infusions. On another day, it took seven (!) tries to get the IV in me. We eventually succeeded, finding the absolute most painful spot for an IV - my wrist - but I did get something from the hospital gift card in return.
But on the scariest day, for whatever reason, I had a bit of a reaction during the infusion and felt like my throat was closing up and had a little difficulty breathing. I still remember Dr. Herald (the lead investigator) pricking my finger with the pricker set to 9, OUCH!
But my blood sugar was OK, and I ended up being OK as well and was most worried about not being able to continue the study. But that all turned out alright as well.
Throughout the second round of infusions, the lunch adventures continued. But you can't eat pizza every day, so some days I would have hospital food instead - the fried chicken was actually pretty good.
Finally, having finished the second round of infusions, we traveled back home - briefly, before going back a few different times for checkups. This was also the start of my many, many, many pat-downs at the airport when my pump set off the metal detector.
I think after a while the TSA agents in Connecticut started to remember me, between the 4oz apple juice they'd been catching almost every trip from Connecticut from the outset and now, because my insulin pump also set off the metal detector.
Speaking of, this reminds me of my favorite part of Bradley International Airport in Connecticut: the hallway between the stores after security and the Delta gates had a giant advertisement for Traveler's Insurance, which you might remember by their iconic red umbrellas.
Well, this hallway had four or five projectors, and each projection was an umbrella made out of leaves that would move when you swiped your hand in front of them. Best part of the airport, by far.
Now, for the end: in 2011, there were two more MMTTs in mid-year and December. By the last MMTT, my blood sugar wasn't low at the end, but it was still normal.
So you're probably wondering: did Teplizumab do anything for me? Even before the later studies of Teplizumab came out, I had a feeling it that for many years it helped reduce wide swings in my blood sugar.
For almost all of 2011, I only took 0.45 units of insulin for breakfast and would still have a low blood sugar by lunch (mind you, now I take 10 units and my blood sugar spikes to above 200 most days).
Once I hit age 15 or so and puberty was starting, things weren't quite so easy. My blood sugar started rising overnight, and I'd go high after breakfast.
I think it's clear that Teplizumab definitely did something for those first few years I had diabetes, and it definitely made things easier.
If you're curious, this is the publication of the results from the study I participated in: https://link.springer.com/article/10.1007/s00125-012-2753-4
If you're curious, this is the publication of the results from the study I participated in: https://link.springer.com/article/10.1007/s00125-012-2753-4
It's crazy to think that this study did so much for me. Whether in terms of diabetes management, or all the crazy stories I have, or my family's now long-time friends from Connecticut (and their cute dogs), none of it would have happened without this study.
I've really enjoyed looking back on this unique period of my life, and hopefully this will convince someone out there to participate in a clinical trial one day. It certainly took a lot of sacrifices to make it all happen, but in retrospect, it was worth it.
And lastly, thank you for reading my first long Twitter thread to the end!
