Guest Post: TrialReach demystifies Clinical Trial Access

I can’t tell you the number of times a reader, a patient I meet at work, or someone totally random asks me “Hey, do you know of any clinical trials going on right now for diabetes?” And usually, my answer is **shoulder shrug.**

And then this dude Mat reached out to me and all of that changed. Mat (which is short for Mateusz ) is one of the founders of TrialReach, which as their website puts it:  ”At TrialReach our goal is to make clinical trials faster, simpler, and more focused on patient needs. We are working to facilitate the vital connections needed between patients and research teams because it is through this collaboration that progress can be achieved.”

And they deliver on this goal. Just two clicks on their website gives you a list of clinical trials pertinent to the disease state you choose in the geographical area you desire – how’s that for easy? Mat has provided the following short guest post for today to explain what TrialReach does, how it works, and how you can get involved. For more information you can head to www.trialreach.com for more info. And, you are a blogger, please consider adding their widget to your webpage. Take it away Mat!

Clinical trials are critical to driving innovation in medicine. This is the only way to check whether a treatment or medical device is working or not. Unfortunately, alot about the clinical trial process is broken. One area is how information about trials is communicated. Most information available today is not only complex, but also fragmented. Doctors and hospitals are not helping, as the vast majority do not share the available options with their patients. It shouldn’t come as a surprise that most trials never finish because they lack participants. As a result, a lot of life saving drugs either never leave the lab or it takes an average of 12 years for them to reach patients.

We want to change that. To do so, we’ve created the first open and free online platform for clinical trials. Our mission is to allow patients to access, understand and connect with clinical trials that are relevant to them. Any researcher can convert their trial information into a friendly format and distribute it to millions of patients for free. Forbes described what we are doing as democratizing clinical trials.

So far, we’ve teamed up with large health sites such as Healthline.com, Drugs.com, Everyday Health or Patient.co.uk. Now we are looking for health bloggers to join our mission. Using our [widget], you can share information about ongoing clinical trials with your community and help speed up research. Together we can make a difference.

I’ve got my eye on you.

I’m watching you, diabetes. Yes you. I’m watching you when you think I’m not. I see you when you’re trying to be sneaky. When you think I’ll ignore you and let you creep into spaces that derail my goal of a 6.5% A1c. Remember how I used to let it slide when I saw a tilted arrow up on my CGM, thinking you might play fair and level out? No mas. Remember when I used to let 160mg/dL just chill, without a correction dose? Those days are over. I’m hunting you, diabetes.

I will be your shadow. I will stalk you in the middle of the night and post-prandial. I will bolus with laser-like precision because I’ve looked up the carb counts. I’ll use my bolus calculator AND the IOB information to make better dosing decisions. And if you try to squirm away I will micro-bolus until you lay back down. We’re not messing around here any more. No more Mrs. Nice Gal.

Sleep with one eye open, diabetes. It’s game over. Well, at least until I hit my goal. Then I’ll probably chill out a little again. BUT, until then, consider me the Liam Neeson of diabetes management. Boo yeah.

Taken Quote

Copies.

I’ll admit it: I judged him a little the minute I saw him. He was skinny in an unhealthy way, pale Portland skin with a neck tattoo creeping out above his purple polo shirt collar. His wallet chain dangled from his pocket and swayed as he walked over with my stack of copies. It was early evening and I’d stopped at my local FedEx to get some clinical studies printed up. He looked at me and asked if I wanted them collated, and I told him no thanks, I’ll do that at home myself.

“Ok that’s good, I wasn’t sure my diabetic hands would be able to get the job done anyways.”

I cocked my head to the side and asked in a somewhat annoyed tone “Did you say that because those are a bunch of studies about diabetes?”

He looked at me with genuine surprise. “Oh no, I didn’t see what the copies were about. I have diabetes.”

I softened. “Me too.” I said.

I looked at him a little closer. He was much younger than I had thought at first. He looked worn out and tired in the way that a hard life can do to people. His eyes seemed flat. His voice was timid. Defeated somehow.

He continued, more quietly. “Yeah I have peripheral neuropathy in my hands and feet and it’s really hard for me to separate the pages and get them collated sometimes because I can’t feel the paper very well.”

“How long have you had diabetes?” I asked.

“Well they misdiagnosed me. They think now I had pre-diabetes as a teenager but they missed it. So I’ve had it about 10 years I guess.”

I looked him over again. He looked…frail. Pained maybe? “Are you a Type 1 or a Type 2?” I asked.

“Type 1,” he responded.

“So, um, sorry to ask,” I ventured further, “but are you on insulin?”

“Yeah I take one shot of insulin a day and then also glimepiride.”

I cringed. His clothes engulfed him. His black Dickies work pants, anchored by his belt, barely clung to his tiny waist. His wrists were bird-like, and his tattooed neck protruded from the sizes-too-big FedEx polo shirt. He was Type 1 alright, and his body had been starved for nutrients for a very long time. He was on a Type 2 diabetes medication regimen that left his cells famished and him thinking this is what it meant to live with diabetes. That peripheral neuropathy in both hands and feet was normal after 10 years with this disease.

“Ok,” I said slowly. “I work in the diabetes industry, and I’ve had diabetes for 21 years. It’s none of my business, but from one person with diabetes to another, I think there’s an insulin you’re missing. I think you might feel better if you took that long acting insulin and a short-acting one to cover you food intake. Has anyone ever talked to you about that?”

“Hmmm, no not really,” he said. “But I was really poor growing up. I didn’t get to the doctor much, so I think they missed this for a while. But I just read an article recently that said pretty much everything we know about diabetes is wrong. Have you heard that too?”

I nodded. “Sure. That’s one way to look at it.” I paused, then started again. “Do you have a good doctor? An endocrinologist that you see?”

“Um no, I didn’t have insurance for a while. So I just saw this one guy up north for a while. But I have new insurance now. I really need to find one down here in Portland now that I live here.”

“Do you have a piece of paper and pen I can use?” I ask him. He hands me a scrap of paper. I scribble down the two names.

“These are two of the best endos in Portland. You need to see a new doctor. You’re not getting the right medication for your diabetes, and I think you could feel so much better.” I write down my own name too. “That’s my name. You can tell them I sent you. Both of these doctors know me.”

He takes the paper and smiles, “Great! I’ve been  wanting to see an endocrinologist. Thanks!”

“Thank you,” I respond. I take my copies. “Take care.”

“Yeah, you too!” he says, with a wide smile.

We are both part of the club. The crappy club that no one wants to be a member of but we are anyways because we don’t get a choice in the matter. The only difference is that I grew up in a house where we had insurance, access to good medical care, and education. I was guided through high school to get good grades, apply to college, graduate and get a good job with good insurance. Someone did a C-peptide when I was diagnosed. My doctors explained in no uncertain terms what my condition was but that I would thrive with diabetes if I just took care of myself. And he didn’t get any of that.

That’s the only difference between he and I. Diabetes does not care if you have insurance, education, or a good doctor. It will not affect us all equally or in correlation to our efforts. It will make no sense to even to the most educated person on the planet. But we can all try to look out for one another in this little crummy club of ours. So at least we know that we are not alone.

 

That was…actually easy for once.

If you’ve had diabetes for say, oh a week or so, then you’ve already come to terms with the fact that you will spend a lot of time on the phone arguing about things. These things will mostly revolve around insurance. They will include explaining why CGM sensors should not be considered durable medical goods because they are, by nature, disposable and should thus be covered at 100%. You will spend time explaining that the number of refills you will need for insulin is infinity, because Type 1 diabetes is forever and insulin = still alive tomorrow. You will tell someone at least 7,000 times that you have met your deductible and out of pocket for the year and that there is no way you’re paying 7k for a pump when yours is out of warranty. They will still not believe you.

You get pretty used to the hassle factor with diabetes. Which is why when I saw that all the Freestyle test strips I use with my Omnipod insulin pump meter (the Freestyle meter is built in to my pump controller) had been recalled, I simply sighed, and called the 1-800 number they had listed for the recall.

The woman on the other end was friendly and patient and read directly from a very straightforward script. She gathered some of my personal data, then asked for the lot number of my test strips. I read off the digits to her, and she asked how many strips I had.

“600.” I responded, which was completely true. I used to test 10 times a day, warranting me a monthly supply of 300 test strips. When I got my CGM, that number dropped dramatically, but the strip order never changed. I had stockpiled a bit, you might say. And now those would all be worthless. I doubted they’d replace that many.

“Ok,” she said, without missing a beat. “We will replace all 600 of those test strips. The new test strips will be there in two business days by close of business on the second day. We will also ship you a Freestyle Freedom meter. Your old test strips, although not approved for use with your OmniPod, can be used with the Freestyle Freedom meter we are shipping, so they will not go to waste.”

And on Tuesday, exactly two business days after I had called, there they were. 600 new test strips and a meter to use the old ones with. I was floored.

Test strips

Wow. If only everything with diabetes was this easy. (Hint: it’s not).

Wide Awake in Here…

After yesterday’s downer of a post, I thought I’d share the upside of getting a dilated eye exam. You can take super-awkward selfies of your dilated pupils while waiting for the doctor to come in. This look is somewhere between appearing a bit, um, high (and I don’t mean in the blood sugar sense) and doing an impression of an anime character, with those wide, glossy eyes that are almost all pupil. Hey, I had to do something to pass the time. Don’t act like you don’t do this too….

photo (2)

In Constant Escape.

Eye ExamEvery year that goes by with diabetes that you don’t have a complications it feels like you escaped something. Like you’ve been running away from this awful specter of the dreaded, faceless “complications,” but you know that statistics say it will eventually catch up with you. But you always keep running, trying to outpace them. And every year when I get my eye exam, I’m always thinking Is this it? Is this the year that I get put in the category of “diabetes, with complications?”

Two years ago, my eye exam showed a tiny spot of retinopathy on the right side. It was so small it could barely be detected. The next year, the ophthalmologist could not see any issues in either eyes. The initial spot had seemingly disappeared. But now, just 14 months after that last “all clear” exam, its back. And in both eyes.

Yes, its minimal. Yes I have had diabetes for 21 years and I know odds are this was going to happen at some point. Yes I know that the best course of action right now is to get even tighter control and stall this issue out as much as I can. Yes I know that there are surgical options further down the road but I don’t want to even have to think about that. What I want is to have outpaced it for another year, and I didn’t.

When you get that diagnosis, you can’t help but feel guilty. My control was compromised last year because we decided to travel for three months in Asia. I made a choice to go back to MDI, travel the world, eat every last noodle dish this side of the planet had to offer, and change times zones as often as I changed socks. And it cost my A1c dearly, climbing up into the eights and then taking me a full year to get back under seven. I can’t help but feel like the resurgence of this retinopathy is completely and utterly my fault. Walking out of the eye appointment, I felt that heavy, suffocating, crushing blanket of Diabetes Guilt layer on to me.

But I also felt determined. The doctor had said that he really wanted to see my A1c under 6.5% and I agreed with him completely. I told him that’s where I’m used to being and that I’m committed to getting there. If the prescription for my eye complications is to tighten control even more, then I’m game. I’ve done it before and I’ll do it again. I’ll keep running. Even if diabetes is right behind me, trying to pass me, or trip me before the finish line, I won’t quit. That is all you can do with this disease. Just keep trying.

 

No Cut-sies.

Tantrum!Diabetes has a way of “cutting to the front of the line” so to speak, when it comes to your health. We’re always prioritizing diabetes, and caving to its little tantrums that demand attention. Lows pull us in acutely, and can cost us exercise, food freedom, and brain activity. Highs do the same, messing up the best-laid plans. Because diabetes is often the squeakiest wheel and there’s that whole matter-of-life-or-death thing to take care of, it’s not surprising we often look at our health exclusively through a diabetes lens.

When you’re thirsty, you assume it’s because you’re high. When you’re tired and lightheaded, it must be a low. If you’ve gained weight, it must be insulin resistance. But just because this high maintenance disease is usually the cause doesn’t mean that it is. Those symptoms I just listed could be easily caused by (in order) actually being thirsty, actually being tired or hungry, and cupcakes. Or cookies. Or those freaking delicious cake pops at Starbucks. Ahem….digression. Sorry.

With diabetes, it’s really easy to neglect other parts of our health, because we have a likely (and often guilty) culprit that’s around all the time, usually causing trouble of some sort. It’s only when you test or look at your CGM and realize hhhm, numbers are good and have been for a few hours, what am I really feeling right now? that you can even consider it being something other than the Big D. Diabetes is so often taking up so much of our mental capacity that we forget there might be easy, or even urgent fix that our body needs.

Like sleep. Of which I have not had enough of. In like, two months. Happy Friday everyone! Hope you get a chance to pay attention to something other than diabetes this weekend.

Portrait of a Low.

Bread basket

 

 

 

 

 

 

Thank goodness for bread baskets. Because I’d ordered the steak…

Use it or lose it?

CalculatorThere was a time when the phrase “smart pump” did not exist in the diabetes world. There was basically one pump brand on the market and it did one thing: deliver insulin. But if you look at the pumps that have entered the market in the last five years, you’ll see all sorts of “smart” features. Things like a Bolus Wizard, carb count catalogues, insulin-on-board calculators, and tagging features galore. And I love that we have all of these options! It’s just that…I never use them.

Ok not never. When I test on the Freestyle meter built in to my OmniPod, I do use that BG as the suggestion for my bolus (plus a carb count). But let’s say I don’t do a finger stick and I’m bolusing on the fly based on my CGM data. Then I don’t use the calculator features. The reason being is that I usually feel like I’m  juggling too many factors for the suggestion to be helpful: yes my BG is 180 and I’m having 35 grams of carbs but what if I worked out? What if I was low just an hour before? What if it’s going to be a super lazy and sedentary Sunday in front of a Walking Dead marathon and I’m so grossed out by the zombie killing that I can’t finish my late breakfast (not that this has ever happened….except that it always happens)? When I factor in all of these variables, I’m convinced that I should just determine the bolus and forget about the calculators on my pump -I’m going to change them anyways, right?

Well, maybe. The problem is that skipping this step allows me to gloss over the whole process entirely. Even if I decide to change my bolus later, having to enter in a BG, a carb count, and confirm that suggested dose will push me to truly evaluate all of these items, rather than scan the dinner table and punch in a mostly-arbitrary “two units now more later if need ‘em” type of bolus. Which is not using the features to my advantage. I’m missing a lot by not taking those crucial few extra seconds to actually think through what I’m doing (what a concept, eh?!).

Features on smart pumps were built around customer needs, and they only work if you use them. And although, as the saying goes, even a broken clock is right twice a day, having a little strategy and calculation on board is better than having absolutely none. Which is where we all tend to trend when we’re in a hurry or busy. I need to let the smart features on my pump offer a little guidance as I bulldoze through life these days. Hey, they might actually turn out to be helpful!

 

And there it is.

Just like that. Just when I had started to worry that maybe all the hard work wasn’t paying off. That I was spinning my wheels. That I was going to Crazy Town, correcting 150s and 152s and counting out those exact 15 carbs for lows and trying every app in existence to get my carb counts better and tweaking my basals and suffering the lows because of it. Just when I thought “I can’t try any harder…” there it was. The elusive, mystical, fantastic number I’d been looking for:

A1cfinal

 

 

 

 

 

 

It took three months (and six Southeast Asian countries) to go from a 6.3% to an 8.1%. It took almost one full year (11 months and one week) to get back under 7%. Finally.

Hell. Yeah.