Monday, December 17, 2012

Thoughts on Breakthrough:Elizabeth al

SO.  I finally read Breakthrough.  I have been wanting to read this for awhile.  It was an emotional read for me, and I'll probably force my book group to read it, although they might get bored.  Talking/reading about diabetes doesn't get boring for me.  I'm diseased that way.

I have many, many thoughts on this.  I will try to organize them, but I make no guarantees.  If you are unfamiliar with it, the book chronicles the discovery of insulin, along with one of the first patients to get it, Elizabeth Hughes, the daughter of a Supreme Court justice and well-known diplomat.

First off, I am grateful.  We have come a long way.  I am not in an Institute slowly starving to death.  I am not dead.  I am here, and I have a lot of people (and dogs!) who are highlighted in this book to thank for that.  Gratitude is the overwhelming emotion here.  

However.  There are other points made, which I would like to address.

In this book, I was introduced to Dr. Allen, the physician who came up with the brilliant diet to starve diabetics to keep them alive.  It sucked, but it worked.  For awhile.  And for a long long time, he was THE expert on all things diabetic.  It is no accident that a prominent family contacted him to treat their daughter.  It is no accident that they funded his Institute, which accepted patients regardless of ability to pay.  He was the man, and he was convinced that a cure was around the corner, and if he could just keep these people alive long enough to get the treatment.....and he was right. (Well, right to the extent that insulin is a "cure", which it isn't, but it certainly was touted that way at the time.) 

At one point, Elizabeth's mother comes up with a concern we all share.  If there actually was a cure, wouldn't it be in Dr. Allen's best interest not to administer it to his patients?  Wouldn't he lose his practice?  She is reassured by the fact that he has taken the Hippocratic Oath.  He can't knowingly harm his patients.

And insulin comes on the scene, and Banting wins the Nobel Prize, and Dr. Allen loses everything.  EVERYTHING.  He is evicted from his institute.  It is completely razed to pay taxes.  He loses all funding, his practice falls apart, his life is a mess. Nobody remembers him.  He is a cautionary tale for those people looking for a cure.  It might ruin you.

Eli Lilly is the drug company that funds the insulin research.  They push for it.  They basically lobby Dr. Banting. It is one of the first (if not THE first) collaboration between researchers and drug companies.  They figure it out.  Insulin can get mass produced.  It can get to large amounts of patients.  It saves lives.  And in the process, it put Eli Lilly on the map.  And I am grateful.  But I am also skeptical.

According to this book, diabetes care revenues now represent over $3 billion in annual sales for Eli Lilly.  It is their second leading source of revenue.  Eli Lilly also has the reputation of taking over promising Type 1 studies, and killing them, labeling them "ineffective."  

I would write it off as conspiracy madness, but it happened in the study I participated in. Started off being run by Macrogenics.  They were super awesome to deal with. Eli Lilly came in and killed it with the label of ineffective. The office I went to was floored.  Ineffective was the one thing the drug wasn't.  That office had the most participants of any other office running the same study.  They knew what they saw.  And what they saw was a lot of people with dramatically reduced insulin usage, wonderful control, and a significant percentage of patients off insulin altogether, although it is unknown how long they would be able to stay off insulin. At least 2 years, in many cases. They also work with many many different drug companies, seeing as they're a research center, and they don't like working with Eli Lilly.  They take a long time to do reimbursements.  They're slow to answer anything.  They are just basically a pain in the tuckus to deal with.  

I think Eli Lilly remembers Dr. Allen.  They learned the lesson.  A cure would indeed, be disastrous for them.  

Dr. Allen also bemoans the "mass attack" approach taken to cure disease.  "Practically all medical discoveries have been made by individuals or small voluntary groups.  The idea of an organized mass attack therefore lacks basis in past experience."  And he's right.  Jonas Salk.  Banting and Best. Alexander Fleming.  That doesn't mean something good and astonishing can't come out of huge organizations.  The JDRF does amazing work.  But if the cure comes from somewhere else, I will take it.  If Dr. Faustman at Mass General is the one to do it, I'm in.  (I wish I had millions to give her) If it's Dr. Philipson,in Chicago. I'm good.  If it's you, thanks so much.  Please just make sure you raise the billion dollars necessary to get it FDA approved.  Also, can you stick around for 10 years for the process?  Thanks.

I have such a love/hate relationship with drug companies.  I love that they keep me alive.  I hate the way they do it.  I don't mind that they make money.  I do mind that they turn away research that doesn't make them money. I don't think they have a secret cure.  I do think they don't want one.  

This is SUCH a small part of the book.  It's mostly about Banting (a fascinating doctor who doesn't play well with others.  It's hard to see him getting funding today).  And it's about Elizabeth, and the stigma of disease being so strong she tells nobody about it.  It's virtually undiscussed.  There are probably many reasons other than "stigma"  and many of them directly tied to her personality, but it is astonishing how well she and her family hide her condition.

I have another issue, which is just making this post LONGER and LONGER and PLEASE STOP ALREADY.  But it does make it look like once insulin arrived, all you had to go is take a couple of shots, and voila!  Normalcy!  Eat whatever you want!  And compared to what they were living like, it is a lot more normal.  

But my life is not normal. It is almost normal. I remember normal.  Normal is grabbing a handful of cereal if the box is left out.  Normal is munching on chips and salsa without counting the dang things.  Normal is pizza on a busy night with no thoughts of repurcussions.  Normal is not being hooked up to devices.  Normal is sleeping through the night.  Normal is nice.   Normal is a word that sounds weird to me now because I've said it too much.

Still, I am grateful.  Thank you, Banting, Best, and others.  Thank you, Dr. Allen. Thank you, Elizabeth Hughes, and others who were willing to inject an unknown substance.  Thank you, Marjorie the dog.  

Doctor's visits. Yippee..

Endo visit this week.  And so it must be logged.

He laughed and laughed when I told him I got the placebo.  "But you did so well on it!"  I know.  My brain just really really wanted it, I guess.

My numbers haven't been stellar lately, especially at night.  Night time and diabetes don't mix well for me.  Either I'm up all night battling lows, or - and this is far more likely - I am up all night desperately injecting insulin trying to get below 200.  I swear I don't absorb it at night or something.  Unless I do, and then crash.

And I know it's wonky sometimes, but I love that Dex at night.  Even when it misbehaves, I am quick to forgive.  Because it wakes me up when I'm high, and I would have never known.

The download from my meter had the alert "patient's night numbers are significantly different than daytime." or something to that effect.  Yes, I know.  What is UP?

He mentioned pump therapy, so I could increase the basal rate at night, but said "not yet."  I was all set to ask for a pump - so please tell me "why not yet?"  

"Well, there's this new product from Tandem..."

"The T-slim.  Yes.  I know.  That's the pump I want."

"You're way ahead of me."  It's supposed to integrate with the new Dexcom a lot better in the coming months, so he wants to wait until that's done before he puts me on it.  I get it.  Wait for the upgrade before buying the product.  In the meantime, there's also a new basal insulin from Novo coming out that is supposed to be really great.  So there's THAT to wait I'm just waiting.  And hoping my nights get better.  Sigh.

A1C was 6.7.  Not fabulous.  Not terrible.  A .4% increase from 6 months ago.

LDL cholesterol still high.  Switched statins.  I grumbled some more about hating cholesterol meds.  He didn't care.

I had him run a CBC again, just because of the experience at Walgreens.  He called bullsh*t (literally he said that, I don't know why it made me smile so much) on my having low hemoglobin, but ran the test anyway.  It's all fine.  As I suspected.  WBC still a touch low.  I guess that's how I roll.

In the meantime, I am also trying to get my G4 Dex to come before the new year comes and my deductible resets.  It's not looking good, even though the one year mark is Dec.20.  Looks like I'll hit that deductible early next year.