Our Diabetic Life

People offering help to find affordable insulin. ❤️

It is critical that everyone with diabetes know their insulin access options, regardless of how you currently get insulin or what insulin you take. GetInsulin.org is a new tool to connect people in the US to the options that match their unique circumstances.

Know where to turn if you are struggling to access insulin. Go to GetInsulin.org

GetInsulin.org is a new program of Beyond Type 1. The program is supported by partners American Diabetes Association, Association of Diabetes Care & Education Specialists, Endocrine Society, Feeding America, The Leona M. and Harry B. Helmsley Charitable Trust, JDRF, NAACP, National Hispanic Medical Association and is funded by Lilly, Mylan, Novo Nordisk, and Sanofi.

I am the mother of three children with Type 1 diabetes. 22 years of worry. 22 years of pride, anger, sadness, euphoria and everything in between. I have celebrated great victories and even greater loss. My children have been both model patients and what doctors would call non compliant. I sit with my worry, like an old friend, day after day. So much so, it is just part of who I am. It’s my normal. And everyday I pretend to make peace with it for the benefit of my amazing boys who sometimes succeed and more times fail...but try nonetheless.

I know we all expierence this Diabetic Life in different ways, and I know I can’t always totally understand.

But please know you are not alone. Never ever.

Please know I am here.

Navigating a ship during a storm is one thing...trying to navigate a ship that isn't yours from a dinghy on the side is another. Having a teenager with Type 1 is a storm us parents often take personally. But a storm is a storm. It comes. It goes.

It's not happening to spite us. It's simply just happening.

I have one son with T1 who has finished navigating the teenage years, I have another in the homestretch, and I have a third in the thick of it. I know how hard it is. And I know it will all be ok. I hope my words help.

https://www.ourdiabeticlife.com/2019/09/teenager-edition-i-want-you-to-know.html

Teenager Edition: I want you to know something I want you to know when your teen doesn’t bolus for a meal, they really can “just forget." And they can “just forget” a lot. I want ...

This can’t keep going on. We need intervention now.

Now.

http://www.mtv.com/news/3133990/hunter-sego-insulin-diabetes-essay-bernie-sanders/?fbclid=IwAR1MoO5qTlggAqlYCLy-3bnr6_tmsT1Pd8h8f6_MpCqg5YNKNSkwr0K9o4g

Americans Are Dying Because They Can't Afford Insulin. I Was Almost One Of Them 'How many other insulin-dependent Americans are still rationing, even though we know the risks?'

This picture was taken a week before J's diagnosis. There was no "Diabetic Life" then. J was so skinny. His diaper so full. I brought him to the doctor multiple times, worried about his weight, his heavy diapers, his thrush, his diaper rashes. Two and two were never put together. The symptoms were given temporary salves and back home we went.

Then the night came when he wouldn't let me put him down. I was exhausted, but my 8 month old baby would only be content in my arms. I rocked him and tried every 20 minutes or so to lay him down, but he would only wail. The hard breathing started about 12am, his chest catapulting out and in, out and in, like it was a painful chore. I picked him up in a panic and he vomited, again and again…and then his eyes rolled into the back of his head.

In the emergency room they took his history and weighed him. 14 pounds? He was 18 pounds just the week before. He was eating like crazy. How? Two hours of sitting and waiting until they tried to hydrate him. They couldn’t find a vein; they poked him for an hour until the seizures began. A surgeon was called in to find a vein. Two scars remain on his ankles from those cuts. They helicoptered him to San Francisco less than an hour later.

21 years ago today J was diagnosed with Type 1 Diabetes. It was one of those moments that change you, stay with you, build you. He was almost lost to this disease; I know how lucky we were he was stubborn enough to live. So when he is stubborn today, I try to appreciate that quality and say a silent prayer of thanks that I got to keep this little p**p disturber for as long as I have. Here’s to another 21 J!

And another,

and another,

and another…

Because insulin is completely stable and should travel between countries rather than coming directly from the lab down the street...(sarcasm font)

https://www.newsweek.com/hhs-alex-azar-import-cheaper-drugs-canada-1451931?amp=1

HHS Sec. Alex Azar once doubled the price of insulin. Now he wants the Trump admin to import cheaper drugs from Canada "For too long American patients have been paying exorbitantly high prices for prescription drugs that are made available to other countries at lower prices," Azar said in a statement on Wednesday.

I am the mother of three children with Type 1 diabetes. 21 years of worry. 21 years of pride, anger, sadness, euphoria and everything in between. I have celebrated great victories and even greater loss. My children have been both model patients and what doctors would call non compliant. I sit with my worry, like an old friend, day after day. So much so, it is just part of who I am. It’s my normal. And everyday I pretend to make peace with it for the benefit of my amazing boys who sometimes succeed and more times fail...but try nonetheless.

I know we all expierence this Diabetic Life in different ways, and I know I can’t always totally understand.

But please know you are not alone. Never ever.

Please know I am here.

ummmm...

Senate Bill Aims to Cut Price of Insulin by 75% The "Insulin Price Reduction Act" would create a new pricing model for insulin, incentivizing manufacturers to lower list prices to 2006 prices.

The post below was written by Dr. Stephen Ponder a couple years ago. As D Parents we take numbers personally and it can be hard not to put the pressure we have on ourselves onto our children. But they are children. (Even 18 year olds.) And they are trying.
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PUNITIVE DIABETES PARENTING LIVES...

After the creation of blood sugar meters and the A1C test in the late 1970's, the way diabetes was managed at home shifted in a slow and somewhat subversive way. Let me explain.
A number of years ago a diabetes camper shared that he often got spanked for high blood sugars by his parents. I never forgot this. After hearing first hand of the dark side of diabetes numbers in this shocking revelation, my approach to teaching d-families (especially new families) forever changed.

When I was a d-child, the measures of diabetes control were expressed in colors. It's harder to equate brown or orange from a urine test kit as good or bad. My folks and I were largely spared the pressure of numerical self-condemnation.

When teaching pattern management of blood sugars, I like to emphasize how blood sugars can be steered, but never forced. I share with parents that I can't "will" my blood sugar to be a specific value. I'm a diabetes specialist who has lived with the condition for half a century and I can't do this, so why should I expect others to live up to this unrealistic standard.

It's one reason I created Sugar Surfing. Dynamic Diabetes Management allows me to steer the direction of flow of my CGM trendline but it cannot pinpoint a BG value, at least not for very long.

Recently one of my CDE colleagues shared a similar story about parents punishing their d-children for out of range numbers: either blood sugars or A1C results. But rather than outright physical contact, now the punishments are actions like grounding, loss of privileges, basic, or withholding common childhood or teen freedoms.

Should I be surprised? Probably not. After all, parents themselves tend to look at these values as reflections on their abilities as an effective d-parent. An A1C value higher than a prior visit, even if only by a tenth of a point, is followed by what often sounds like an apology wrapped in a variety of explanations (my child was recently ill; was away from home for a few weeks; stayed with grandparents over the summer, etc...). And my brethren in the medical profession often seem to behave as judge and jury towards the parents and family.

There should be no need to apologize for BG numbers. That's because they should possess no moral weight. BG data are simply guideposts (as blood sugars) or backward reflections of past BG control (the A1C) collected along the path of one's journey towards glycemic self-efficacy.

Internalizing these BG data and equating them, even in the smallest of ways, to one's self worth as a patient or a parent is a slippery slope to shame, self condemnation and emotional abuse. And as above, it can devolve into outright parental bullying and self-righteous judgment by the very loved ones we depend upon to combat this condition with us each day.

My moral is this: don't use the words "good" or "bad" in the same sentence with a blood sugar value or A1C. No one can "will" these values into being what you want. Diabetes self care is a series of choices, wrapped in hard work, and baked in the oven of experience. But it's a job which never ends. The diabetes genie does not reside in a bottle. She/he exists in the mind: your decisions and choices.

We are too likely to punish ourselves and our d-children because of their numbers. And while physical punishment and retaliation is thankfully rare, it still exists. Emotional abuse can insinuate itself into our lives in the most innocent of ways.

By far, most of our punitive actions reside in the realm of our emotions and attitudes towards each other. Disappointment is a powerful weapon which can be used to deeply cut into a loved one's self esteem. Blame and shame are disappointment's next door neighbors.

Share this post freely. Think about this message today. Take this week to make a fresh start with how you and your loved ones with diabetes interact. You will add years to each other's lives in my opinion.

Booya!

FDA Approves Nasally Administered Glucagon to Treat Severe Hypoglycemia Lilly will market the novel glucagon treatment under the brand name of Baqsimi. It should be available in U.S. pharmacies in the next month.

Hopers gonna hope.

We are grateful for Senator Jeanne Shaheen, U.S. Senator Susan Collins, Senator Tom Carper, and Senator Kevin Cramer for introducing the Insulin Price Reduction Act, which would treat insulin like the life-saving drug that it is. JDRF maintains that it is unacceptable for anyone who needs insulin to not have access, and we will continue fighting to make insulin more affordable, as this bill would do. Read more: https://www.shaheen.senate.gov/news/press/shaheen-leads-senate-bipartisan-push-to-rollback-over-a-decade-of-insulin-price-hikes

The view isn’t the same as it was eight years ago. The blood droplets have been replaced by CGM’s. The children no longer eat with care…they are teenagers who devour…constantly devour. Their homework isn’t hurried through; It is slowly, slothfully done in tortured fashion.

The instruments have been replaced by computers and phones.

And their father is now their guardian angel.

Cherish those moments, friends. Cherish the chaos. Cherish your story.

Even now, when it is different than it was.

Cherish it all.

https://www.ourdiabeticlife.com/2011/11/if-you-looked-in-our-window.html

If you looked in our window. If you looked in our window: You would see a family. Blond hair, brown hair...and one with a tint of auburn in it. You would see a family ...

This is something...

https://beyondtype1.org/future-high-deductible-exemptions-for-diabetes/?fbclid=IwAR3dS_4EwaRuna-GoX1uXJpgobrcyXLNkpIsAylByCMA0FoPC7QTWdvtgVk

New Guidance from the US Treasury Opens Door to High Deductible Exemptions for Diabetes Care The U.S. Treasury issued new guidance which aims to make accessing medications for chronic conditions easier under some insurance plans.

https://www.fda.gov/news-events/speeches-fda-officials/remarks-acting-commissioner-ned-sharpless-fda-public-hearing-future-biosimilar-insulin-05132019

Remarks by Acting Commissioner Ned Sharpless at the FDA Public Hearing Remarks by Acting Commissioner Sharpless at the FDA Public Hearing on The Future of Biosimilar Insulin, May 13, 2019, White Oak, MD

Now, this made me laugh.

Just when you think everything is going good... 🙄😑😅

The last line is my favorite line.

https://www.nytimes.com/2019/04/10/us/politics/insulin-prices-legislation.html

Lawmakers in Both Parties Vow to Rein In Insulin Costs A hearing on Wednesday was one of several signs that Congress was serious about trying to address the cries of distress from constituents unable to afford the medicines they need.

We have been heard.

https://www.nytimes.com/2019/04/10/us/politics/insulin-prices-legislation.html

Lawmakers in Both Parties Vow to Rein In Insulin Costs A hearing on Wednesday was one of several signs that Congress was serious about trying to address the cries of distress from constituents unable to afford the medicines they need.

Little by little, the change will come...

https://www.prnewswire.com/news-releases/sanofi-provides-unprecedented-access-to-its-insulins-for-one-set-monthly-price-300828431.html

Sanofi provides unprecedented access to its insulins for one set monthly price BRIDGEWATER, N.J., April 10, 2019 /PRNewswire/ -- Starting in June, Sanofi will further expand its innovative Insulins Valyou Savings Program so people living...

Small change is still change. Forward.

Cigna caps insulin costs at $25 for qualifying clients Cigna and Express Scripts have launched a program that will keep out-of-pocket costs for insulin at $25 per 30-day prescription.

Accountability is awesome.

Insulin Makers To Be Called In Front Of Congress To Answer For Price Hikes “We want to know why the cost of this life-saving drug has skyrocketed in recent years, and why they’re not offering more lower-cost alternatives to patients,” said Rep. Diana DeGette (D-Colo.), ch…

Realness.

*I'm 15 years old at the time*

"Brittany, what's your blood sugar?" My mother asks after I get home from school.

"Umm... 136." A number I randomly blurt out without testing what my blood sugar actually was.

I go in my room and glance over at my unused lancets and test strips. I know what's it's there for. I know I'm supposed to take care of myself.

But why aren't I? Why am I fighting against it?

I go to lay down, I'm tired, and I don't feel right. I fall asleep...
A half hour or so slips by...

"Hi Brittany,
My name is John , I'm an EMT and we're here to help you.
Can you tell me what your name is?"

"...Brittany", I reply.

"Great Brittany, do you know why we're here?"

"My diabetes?" As I let out a deep saddened sigh.

"Yes, your blood sugar was 19."

"We gave you a shot of dextrose. Please drink this juice and sandwich to stabilize your blood sugar."

"Thank you", I reply as I'm still very dazed and confused as to what's going on.

My mother hugs me and begs me "please take better care of yourself".

As tears fall from her face. I see the frantic look in her eyes.

Once I'm back to full consciousness, it sets in. I melt down. I cry, and this isn't a normal cry. This is painful and it hurts and all the anger releases from within me in full dispair.

The feeling of helplessness, guilt, shame because I feel weak... I feel tested... I feel numb... I feel unworthy of all these extra chances I get.

I feel like I'm letting everyone down... I'm letting myself down. I feel like a failure at a disease I never asked for. Something I could have never prevented.

All I can think about when I take my insulin injections is if I don't take enough I could end up with amputation, loss of eyesight, kidney failure, heart disease and various complications.

I think about how even if I have great control, there is still a risk. It overwhelms me. I went from having a care free childhood to having a fear of dying in my sleep from a low blood sugar or too soon from complications.

This isn't the typical "teenage reality". I'm sick and there's nothing I can do to fix it. No denial, begging, or lashing out will make my situation better.

I'm my own worst enemy and the only person who can save me in the end, is me. It's the most terrifying and debilitating feeling having this burden riding on my back.

It took awhile but this process has changed me. I came to grips with knowing I only had one choice. Which was to fight. So I did. I let it in. I embraced the unknown. I rose above the darkness that consumed me. I continued to get up everyday to fight the same demons that left me tired from the night before.

I went from crawling to walking to eventually running. I didn't want diabetes to win. I knew that this wasn't going to be easy. But I knew what was on the line.

I knew I would fail, which I have. It took much trial and error. But I've learned to get back up, brush myself off, and keep going. To not let the fear overcome me and dwindle my spirit. To honor and respect the journey, for its led me to here.

To not go down without a fight...

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-lilly-insulin-prices-20190308-story.html?fbclid=IwAR2AWl3qICvEzEncoCGybVkqewwR3Ax1Bok2r3fqKRG_0IOMIpct5p_krVY

Lilly unveils a ‘generic’ insulin and shows how broken our healthcare system really is All Lilly is doing is following the same crisis-management playbook as fellow pharmaceutical pirate Mylan, which introduced a "generic" version of the EpiPen after being pilloried for having jacked up the price of the life-saving device by 500%.

This is joyful, and confusing, (exact same insulin, different label, different price?) and means the government's interest in Insulin pricing is scaring those in the Insulin making business to change. I'm so very thankful for this change, but if I've learned anything from the insulin companies in the past 20 years...magic always comes with a price. I'm hopeful this is one step towards the complicated revamping of the American Healthcare System, and even more hopeful this may save some lives in our community.

Hopers gonna hope.

https://www.nbcnews.com/health/health-news/eli-lilly-offer-half-price-insulin-people-type-1-diabetes-n978981

Eli Lilly to offer half-price insulin for people with type 1 diabetes Version of Humalog, to be sold only in the U.S. as Insulin Lispro, would cost $137.35 per vial.

Tap to see the whole picture and then wipe the tear from your eye.

That's right. As Manny, one of the original crew explains: the life expectancy in some places around the world following a diagnosis of type 1 diabetes is not even a year.

For the cost of one rose, as child with diabetes will be provided with life-saving insulin for a month. Twelve roses provide a whole year of insulin.

Please donate today: www.LFACInternational.org/SpareARose

One rose = one month of life for a child with diabetes.
A dozen roses = a year of life for a child with diabetes.

An easy equation. But incredibly impactful.

Go to www.LFACInternational.org/SpareARose to learn how you can save the life of a child with diabetes.

https://www.insulinhelp.org/

American Diabetes Association Help with insulin is a phone call away.

I have three boys with Type 1 Diabetes who need insulin in their body at all times to live.

When I got to the quote, "There isn't one," tears welled up in my eyes.

This is our life.

This is wrong.

https://www.nytimes.com/2019/01/18/opinion/cost-insurance-diabetes-insulin.html?fbclid=IwAR1YWUGndfYXfiZdvhTlMlofm_3liBf6_tPELIuoxoBptN2pK5XvETSmTTc

Opinion | The Insulin Wars How insurance companies farm out their dirty work to doctors and patients.

In our case, some news is good news.

https://myglu.org/articles/fda-commissioner-puts-insulin-makers-on-notice

FDA Commissioner Puts Insulin Makers on Notice Commissioner Scott Gottlieb says the FDA will regulate insulin differently in order to bring biosimilar insulin to market and bring insulin prices down by 2020.