Symlin, Part 3: The Other Drug War at the Border


When I first formulated my plan for trying out Amylin Pharmaceutical‘s amylin agonist, Symlin, I figured the hardest supply to acquire would be a pH meter. Now, granted, I haven’t tried for the pH meter yet, so it still may prove difficult– but getting my hands on Symlin itself has certainly been an unexpected hassle.

I assumed it would be easy. Symlin! Aaron Kowalski and the Artificial Pancreas project have their sights set on it; I’ve met a host of type 1 diabetics now who use it; and, heck, I’m in Amylin’s hometown! San Diego! Certainly a large, publicly-traded company started here has a rep about town, right?

Well, my endocrinologist didn’t like the idea. The general theory in endocrinology seems to be, If it ain’t broke– don’t fix it. You can live for fifty years with middling care, so why should you try to optimize? If there’s any potential downside to a change, just leave it out! Keep on keepin’ on. Don’t rock the boat.

In more specific terms, my post-prandial excursions were not extreme enough to warrant prescribing Symlin. Without seeing numbers above 190, 200 after meals, why risk the potential for hypoglycemia from the improper dosing of a Symlin/insulin combo?

Or, as I rephrased it, if my control were worse, I could get this new tool. Keep doing well, and I get to.. well.. keep on keepin’ on. Never mind that my control is good because I eat practically the same thing every day, and I would appreciate the added flexibility that Symlin might allow. Never mind that from a biomimicry perspective, there might be a long-term benefit to having the amylin hormone in my body.

My deepest sympathies to Yossarian.

Now, I understand my doctor’s hesitation, and I don’t hold it against him. It’s not his job to optimize my care, certainly not given the risks. It’s his job to keep me within a region of good care, and taking risks to move above that would be unnecessarily dangerous and costly, especially given that he can’t be there all the time, and he can’t just assume that I know what I’m doing. So I get it.

But I am me, and I do have an interest in optimizing my care for the long term. If someone alive today is making it to one-thousand years old, I’m going for at least 125.

My doctor said he wouldn’t stop me from getting Symlin, but he couldn’t in good conscious prescribe it. So a second opinion was in order.

I set up an appointment with a second doctor– recommended by Dr. Steven Edelman, who is a documented fan of Symlin, as one who Dr. Edelman trained. I explain my desire for Symlin; I drop fancy terms like “post-prandial excursions” and “gastric emptying” to prove that I’ve done my homework and I’m not just going to hurt myself trying something I’m not familiar with. And this doctor? Not a fan of Symlin. It complicates things. Why fix what isn’t broken?

Really? I’m in San Diego! You were trained by Dr. Edelman! Amylin’s marketing people haven’t won you over yet? What are they doing all day? Why am I sitting in this office doing product marketing for Amylin?

But this doctor isn’t personally liable for my care. Any potential risks seem smaller from a distance. I ensure him I won’t do anything foolish; that I just want to try it, and if it proves too difficult or unpredictable, I will stop. So, he writes the script. I thank him, and ask him to assure my normal endocrinologist that I still love him, and hope he’s not offended.

And so the prescription is finally acquired. It only took… several weeks, two doctors, and one bout of frustrated crying to my husband.

But the story isn’t over yet: I call the Kaiser pharmacy, asking to have the Symlin mailed to me. Symlin can’t be mail-ordered; I have to pick it up at a local pharmacy.

“Oh? Why?”

“I’m not sure– is it one of those little vials? That can’t be mailed usually.”

“But I mail-order insulin all the time.”

“I’m not sure.”

Ok, fair enough. I order it at the pharmacy. It’s a special order, so it will take at least three days. Really? Have I mentioned Amylin is in San Diego? Closer to me than the pharmacy is? Do they have to manufacture each bottle when it is ordered and walk it over?

But I’m in the final stretch now, at the pharmacy, in line. And the woman behind the counter finds finds the box in the refrigerator after some searching. She walks it back to the cash register. “Oh, my!”” She says, eyebrows hitting her hairline. “Do you know how much this costs?” She actually drops the box on the floor she’s so surprised and flustered.

“Um, no.”

“Wow, this is… this is a lot! Wow.”

And now don’t I feel awkward. Why is this stranger commenting on the price of my medication? Well intentioned, no doubt, but… can we just be a little bit more estranged, please? I think you’re breaking some established social rules here.

But: $273. Ouch. For a tiny, 5 mL bottle, with only 3 milligrams of pramlintide. And that’s just my portion, a fraction of what the insurer theoretically pays. At that price, why not just buy some cocaine and call it a day? That would certainly reduce the perceived effect of post-prandial excursions.

But now I’ve got my little vial of Symlin, so I’m one step closer to figuring out what I can do with it, and whether it’s worth using. Given that I have to go in to the pharmacy to pick it up, and given that it’s apparently worth its weight in gold, it better make a noticeable difference in control, and I better find a way to administer it without additional shots.

The take home message here, though, is this: Amylin marketing needs to get its act together. Really. I have such a hard time getting Symlin, and I am a patient asking for it by name, cash in hand, in San Diego, where the drug should have a hometown advantage! And, I didn’t even know about Symlin before seeing people use it, all the way across the country in Florida. I mean, I’ve known people who work for Amylin for years now, and still until a few months ago, I thought they only did type 2 drugs!

Mr. Icahn? Carl? Give me a call. We should talk.

Please note: I am not a doctor, or a medical professional, or even a chemist. Anything I write about Symlin is based on my own research; it has not been independently verified, and is not medical advice.

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12 years ago

You’re still lucky to at least be able to get hold of it. I, living in Europe, have virtually no chance to see the small blue vial :-( I understand your curiosity about trying this new meds. It’s the idea of “replacing what is missing” since healthy people do have amylin, so why can’t we, right ? :-) I wish I could be in your place. It was hard for you to get Symlin but for me it is impossible…

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