#DiabetesAccessMatters – Share Your Story

Tell it.Now.-2Everyone has a story to tell.

Our lives are a collection of stories. Some are silly and happy, others filled with heartbreak and sorrow, and some flow with frustration and anger. These stories may be short and sweet or long with plot twists and abrupt endings. Whether we share them or not, we have stories to tell.

For people impacted by diabetes, we have stories that resonate within our community. Stories of hypoglycemic reactions or DKA, mentors and supporters in our healthcare system, and stories of access to the technology, drugs, and care that keeps us alive.

We want the diabetes access stories, because they matter.

By we, I mean the diabetes community. Last week, diaTribe’s Adam Brown and Kelly Close gathered a group of individual advocates and diabetes advocacy organizations on a call, prompted by the recent decision by United Health Care to restrict access of insulin pumps for adult members. While the conversation began with the decision, it quickly became a discussion about overall access… not just insulin pumps.

And from that call, it’s clear that while we all have access stories, there was not one place to house them all. We needed that, so Diabetes Patient Advocacy Coalition has stepped up to collect our stories to share with the public, including the healthcare community and policy makers. By providing these stories, we can build a plan to connect patient access issues and solutions that include our community. (I’m a big fan of “nothing about us without us” and having a seat at every table that makes decisions about our community.) 

Why #DiabetesAccessMatters NOW?

I’ve seen comments in the community that range from: “I’ve been talking about restrictive access to diabetes supplies for years and no one seems to listen!” to “Why did insulin pumps get people screaming and not meters or insulin?”

Here’s my take:

  • If you are one advocate or one organization, you’re not going to make much noise. Sorry to burst that bubble, but hell, I know this first hand. It takes a united front across several diabetes organizations and several advocates to impact change. There just hasn’t been that unified commitment groundswell until now.
  • It’s always been about access. We individually mount campaigns within our individual insurance plans for overrides on the amount of strips. We individually ask our healthcare team to appeal a decision on the type of insulin insurance will cover. We individually spend hours, days, months building cases for Medicare coverage for CGM. We have the tools and technology now to build a unified front.
  • The tipping point was insulin pumps, but the issue is access. It could have been meters or insulin or any aspect of treatment. Perhaps it should have been something else (we’ve tried in the past to raise the access alarm), but we’ve morphed quickly from #MyPumpMyChoice to #DiabetesAccessMatters because it’s about more than insulin pumps.

Why is DPAC Collecting The Stories?

NYC-2Because DPAC represents all individuals impacted by diabetes: Type 1, Type 2, MODY, Gestational and families of people with diabetes.

We work with ALL diabetes organizations that may specialize in one or two types of diabetes (i.e. JDRF is a wonderful organization, but they represent only Type 1 PWD.), to amplify the voice of the patient. The diaTribe Foundation is a 501(c)(3) and cannot use the stories for lobbying policymakers; DPAC can. (DPAC is a 501(c)(4) non-profit and the big difference is political lobbying.)

But the stories are for all organizations and advocates to use.

Your story will be shared across the community.

Your story will be used to show the frustrations and roadblocks to access and choice.

Your story becomes part of the larger story we share with insurance companies and policymakers.

Your story is worth telling.

Because everyone has a story to tell.

Tell yours. 

How is Milk Like Insulin Pumps?

Meet Bessie.


She’s a cow. She produces milk that her farmer sells to a large dairy so that people can drink it.

But not everyone likes milk produced by Bessie.

Other farmers offered different cows:



This cow (I’ve named her Daisy.) only eats organic grass.

She produces a different milk that her farmer also sells to a large dairy.

But other farmers, smaller farmers, offer milk… not from cows.

They offer milk from almond trees. (I’m not naming this tree. That’s all on you.)

They offer milk made from soybeans. (His name is Bob.)


And so everyone who wanted to drink milk could choose what type of milk they wanted:

  • milk from Bessie, or
  • milk from Daisy, or
  • milk from Bob or…
  • milk from the unnamed almond tree that you’ve named in your head, because you feel bad.

Some farmers couldn’t compete in the production of milk. They shuttered the barn doors. But other farmers continue to work on making their milk better and healthier, giving alternatives if one type of milk isn’t the best choice.

Most of that milk goes through dairies (Yes, I know that soy milk doesn’t go to a dairy. Work with me.) and we get that milk by paying dairies. Some dairies offer lots of choices; other dairies only carry one type of milk.

We pay them, we get milk. Sometimes we pay more, depending on what dairy program we use.

The dairies contract with the farmers to get the best price on milk.

One day, one of the largest dairies decide that they are not going to offer almond or soy or even organic milk to its customers.

Monopoly Milk

milk-container-1507753-639x852They have been talking with Bessie’s farmer and negotiated a deal to get a better price to save money. Part of the agreement is exclusivity. For the farmer, who is a business that gets paid by the dairy (and not those of us who drink milk), it’s a great proposition.

For those who drink milk from that dairy, you get Bessie milk or no milk at all.

Sure, you can go to another dairy, but some people can’t change dairies. They’re stuck. Who is angry?

  • The other farmers are angry. (They just aren’t large enough to be able to offer exclusivity because they have small farms.)
  • The customers of the dairy are angry. (What if you tried Bessie’s milk and it didn’t make you healthier, but Bob’s milk did?)
  • Friends of the customers of the dairy are angry. (They still get to choose milk from Daisy.)

Now, some of us like Bessie’s milk. And the farmer. Some of us don’t. Bessie isn’t for everyone and that’s OK.

Who Gets Poked By A Pitchfork Over Milk?


There’s a lot of anger and sharpening of pitchforks. But here’s the question. Who should you poke?

  • Should you poke the farmer because they are the largest and produce the most milk and offered a great financial incentive to the dairy? The dairy didn’t have to take the offer.
  • Should you poke the government, as some suggest? Would it help?

If you want to raise the pitchfork and poke at anything, direct your anger to the dairy. The dairy chose to stop selling different types of milk. The dairy is a business that is paid by customers and serve as the middleman between the farmers and the drinkers of milk. They did not have to sign an agreement that was offered. Customers can complain, but they need to complain to the right business: the dairy.

The dairy is the only entity that can give back the milk choices.  And the community should be the ones to get the dairy to give back the milk choices. Expend the effort on the dairy.

Now… some people who want milk can’t get any at all. Some dairies tell customers that they can’t have milk or they can’t afford the milk offered. And some customer don’t have dairies in their country. That is recognized. That’s another pitchfork rally, just not for today. Today, it’s about the choice of milk being taken away from paying customers. 

And If You’re Still Wondering How Milk Is Like Insulin Pumps?  

Hint: This is not about milk.

This is about access to different types of milk.

I like milk. All kinds of milk. I want to keep more than one farmer in business.

I like insulin pumps. I have used a few of them.

Milk = insulin pump in this post.

Let’s not cry over the spilled milk. Let’s make sure that there is more types of milk available to the community.




HeV16 Theme GraphicIt’s taken me a few weeks to get back into the swing of things (and by things, I mean life), but I wanted to share my takeaways from the most recent HealtheVoices conference in Chicago. There are some other blog posts that will talk about what happened, but I’m going to give you my perspective. And you know that it will be honest and forthright, because that’s who I am.

Not a wallflower.



HealtheVoices is designed to bring advocates from different health conditions together to learn about how to amplify our voices online and create deeply rooted connections. (In fact, the tagline for this year’s conference is “Deeply Rooted Connections.”) I attended last year and was honored to be asked back to be an advisor for this year. (Disclosure: Janssen Pharmaceuticals and Everyday Health paid my travel, lodging, and compensated me financially for my brilliant mind. They did not ask me to write about this and didn’t pay me to do so. I don’t do that. )



There were over a 100 of us (which is almost double the amount from last year) and we spanned a wide range of conditions: HIV, Mental Health, RA, MS, IBD, Psoriasis, Cancer, HepC, AFib, Blood Clot, Diabetes, and more. We were there to connect and learn – from each other and from experts.

What Happened?

20160415_healthevoices_127People talked. (Yes, that’s me.) I was able to share my story and my passion about my community, ending with what I believe: “Find your tribe. Love them hard.” And my tribe got bigger that weekend. I wanted to hear what other communities were doing and how we can support each other.

I’m so impressed by what many of these individuals have done with their own passions. Some choose to share their lives out loud in public to help others get the information they need, others to help create safe communities where shame and stigma do not exist, and others to make sure no one feels alone.

It Was Like Inside Out

There was joy in seeing friends and meeting new people. Sadness when it was time to go. Fear from some on how to take all we learned and apply to to our own lives and communities. Disgust at a TSA officer who questioned an individual about her handicap. There was anger at some of the things that keynote speakers said during presentations.


OK, a lot of anger.



Jamie Heywood and Dr. Kevin Pho, MD were our keynote speakers and reflecting back on their presentations, they weren’t really geared to a patient advocate audience, which made for some contentious moments. (I’ve given some suggestions for keynotes next year. Stay tuned.)

The Sessions

One of the awesome takeaways was the visual creation happening during the sessions. I’m sharing a few that I thought are worth examining further:

Compassion Fatigue

We have it. Any of us who care for someone else, even remotely and online, can experience this. (It can also be called burnout, which is more real to me than just “fatigue.”) I had a wake-up call with this and I know I’m not alone. I love: “No is a complete sentence.”

Let's Talk Compassion Fatigue_Talk 1_Small


Keeping It Fresh

How many times can you talk about a low blood sugar? How can you create a content calendar that you can live with? How do you define your writing and what content you share with others?

I loved Amy O’Connor and Rose Pike’s discussion on headlines. Big time. That’s another post in itself.

Keeping It Fresh_Small

Better Together

While this was one I couldn’t attend because it was being offered at the same time as Everyday Health’s Keeping It Fresh session, I was able to get great insights and ideas from this visual representation. (And I’ve already started to incorporate some of the Top 10 rules.)



What’s Next?


We will be making our own journeys this year. But we’re not alone.

Ask questions. Connect with people who may be outside of diabetes how they do it. How they live? What they do to advocate for themselves and others? What can we do together? How can we make it better, easier, or if nothing else, more exciting as we all travel our own health journeys.

I’ve got my bags packed. And my traveling buddies. Let’s go.


Find your tribe. Love them hard.

Don't Kick The Baby! (Kickstarter It!)

If you’ve ever watched South Park, you might remember this:

And I don’t want you to kick the baby, I want you to Kickstarter this baby.

We Need Real Resources for Type 1 Diabetes Pregnancy

Even with one of the top endocrinologists familiar with Type 1s, pumps, and pregnancy, I felt alone in my care. That whole “What to Expect When You’re Expecting” doesn’t discuss the hypos in the first trimester, the fears of high blood glucose, or the psychosocial aspects of a pregnancy that has diabetes in the mix.

Know what I had?  The Medical Management of Pregnancy Complicated by Diabetes by a well-known physician that was geared towards medical professionals and not people with diabetes. (And I bristled at the very title… “Complicated” – yep.) It gave information, but when you are awake at 3am and freaking out, this tiny book just didn’t cut it. I knew very few individuals who had Type 1 and had recently given birth (In fact, I knew one.) and longed for real resources.

Enter The Solution

I’ve said before that I’m not the person to turn to for information about Type 1 diabetes and pregnancy, as my pregnancy was not about my diabetes. But I know plenty of women now who have shared their experiences and insight since The Kid was born, and I’m thrilled that one of them (Who also happens to be a dear friend with an adorable baby, Lucy!) is providing a solution for a patient-focused real resource.

Ginger Vieira.

Along with Jenny Smith<CDE, RD (who is also a PWD!), they’ve created: Pregnancy with Type 1 Diabetes: Your Month-to-Month Guide – and there’s a problem.

No publisher will touch it, because the market is too small. That means those of us Type 1s who want to have healthy pregnancies are not worth publishing for, because we don’t make up a profitable segment of the population. So, Ginger and Jenny have gone out to the community to help get this book published through Kickstarter.

Why? Because all women with Type 1 diabetes deserve to have real world resources to help them get through one of the most rewarding (and management intensive) times of their lives. This is one of them.

Ginger was kind enough to share this video with my readers (It has Lucy in it!) why this is important and how you can support the work they’ve done.


What’s better than Lucy?

That’s a trick question. Nothing. But if there was, it would be an excerpt from their book, which is what Ginger has graciously offered to you as an exclusive to this blog.! Take a read, then head to Kickstarter and give what you can… and share this within our community.




Preparing for Pregnancy: Part 3

New Standards for High & Low Blood Sugars


There’s been a longtime assumption that anyone with an A1C in the 5s or low 6s must be experiencing a tremendous number of low blood sugars every day or every week, but the truth is that that is not an essential ingredient to achieving an A1C at or near non-diabetic levels.

What it really comes down to is different goals, different standards for the day, different ways of dosing insulin, of choosing what to eat, when to take insulin and how much longer after that before eating…it’s a variety of habits that lead to an A1C in the 5s or low 6s. Those habits require a tremendous amount of practice, discipline, and always being open to learning and making adjustments.

If you are aiming for an A1C in the 5s and low 6s and you’re constantly experiencing low blood sugars then that is a sign that you’re due for a little help and fine-tuning on how you’re approaching your diabetes management. Frequent hypoglycemia is not an essential part of achieving a low A1C.

This entire book is designed to help you achieve a low A1C without experiencing frequent hypoglycemia! It’s all about blood sugar management, fine-tuning your insulin doses, and learning as much as possible about diabetes management during pregnancy and everyday regular life!

Okay, now that we’ve gotten that part out of the way, let’s talk about the A1C you’re aiming for and the blood sugar goals you’ve set for yourself.

What do you currently consider a “high” blood sugar?

We’re going to keep this straight-forward, cutting right to the chase: if you’re trying to achieve an A1C of 6.0 but your blood sugar between meals and during most of the day is usually sitting around 150 mg/dL or higher, you’ll be as likely to reach an A1C of 6.0 as someone driving north when they’re trying to get to Florida. It just doesn’t make any sense. Your target blood sugar ranges and your A1C goals don’t match.

What do you do when you see a blood sugar of 150 mg/dL on your glucose meter two hours after eating? Do you take a correction dose of insulin or do you say, “Eh, that’s fine”?

Take a look at the following A1C translation chart from the American Diabetes Association explaining what the average blood sugar level and overall range is for each A1C result:

  • 12% = 298 mg/dL (240 – 347)
  • 11% = 269 mg/dL (217 – 314)
  • 10% = 240 mg/dL (193 – 282)
  • 9% = 212 mg/dL (170 –249)
  • 8% = 183 mg/dL (147 – 217)
  • 7% = 154 mg/dL (123 – 185)
  • 6% = 126 mg/dL (100 – 152)
  • 5% = 97 mg/dL (70 – 125)

What is your A1C right now? If you’re at 7.5 percent and you’re extremely frustrated, ask yourself, “How often is my blood sugar sitting around 150 mg/dL?”

Now, where do you want your A1C to be either prior to pregnancy or during?

Take a look at what your goal A1C translates to as an average blood sugar and blood sugar range.

For example, an A1C of 6.0 percent: That means your blood sugar is rarely over 150 mg/dL, and very often sitting around 120 mg/dL. That 30-point difference matters. If you’ve been telling yourself that a 150 mg/dL isn’t a big deal and isn’t much different than a blood sugar of 120 mg/dL, then you now know exactly why your A1C hasn’t budged from 7.5 percent.

Want to get your A1C in the 5s? That means you’re aiming for non-diabetic blood sugar levels. It means you’re spending the entire night near 90 mg/dL. You’re waking up near 90 mg/dL. (Why consider the overnight? That 8 hour window of time that you are hanging out at a value, weights about 33% into what your A1C value is going to look like).  An A1C in the 5s means You are pre-bolusing your insulin before meals so that your blood sugar does not rise too much past 130 to 140 mg/dL for very long, or very often. It means when you correct a low blood sugar, you only consume enough carbs to bring yourself back up to 90 mg/dL rather than 130 mg/dL. It means when you see a blood sugar level sitting steadily at 140 mg/dL, you take a tiny correction dose of insulin to bring it down to 90 mg/dL.

An A1C in the 5s means you’re always aiming for non-diabetic blood sugar levels, but that doesn’t necessarily mean that’s where you should aim.

Non-diabetic blood sugars?! That’s crazy!

We know, it sounds crazy! But here’s the thing: you don’t have to do it perfectly. (And frankly, you don’t have to do it all–that’s a personal decision that you’re going to make for yourself. It can’t be made for you!)

Instead of perfection, it’s just the aim. The target.

Instead of telling yourself that it’s impossible to manage your blood sugars that tightly, you’re telling yourself that you can do the very best that you can do to achieve the tightest blood sugar levels that you personally can achieve for the sake of both your health and your baby.

You don’t have to be perfect. You don’t have to get your A1C in the 5s. It’s okay if you never see your A1C in the 5s while you’re pregnant–but the intent is what matters. The intent and the belief in your ability to do the best you can do is what’s going to help you achieve blood sugar levels you’ve never thought you could achieve. Learning how to manage your diabetes is a non-stop, life-long learning process and if you believe in your ability to learn and improve, you could learn more about diabetes management during your pregnancy than you even realized there was to learn!

You just have to believe in your ability. Not the ability to be perfect, but the ability to improve, to achieve things you’ve possibly never achieved. That is all.

(And if you have a healthcare team that doesn’t understand the aspect of “perfect blood sugars during pregnancy isn’t possible” thing…you show them this chapter and you tell them what’s up!)

And it’s really about creating your own personal standards and goals.

For all of us that didn’t have this resource when we were going through our own pregnancies with Type 1 diabetes (not COMPLICATED BY DIABETES), don’t you wish we had this? That’s why I’m sharing this and asking for your help with their project, because I know that it’s not about being a profitable market… we are not a “market” – we are women who want healthy pregnancies and real-world resources.


It’s no surprise to those who know me or read this blog that I have fingers in a lot of (no carb!) pies these days. What started with this blog has blossomed into two non-profits, The Diabetes UnConference, policy advocacy, reviewing funding grant applications as a peer reviewer nationally and internationally, and attending/speaking at health conferences.

stop-sign-1420987-639x639This past month, I didn’t stop. Coming off the high of The Diabetes UnConference in Las Vegas, there was a short vacation with family (although John says that I really didn’t act like I was on vacation), then the launch of the DPAC #suspendbidding campaign and in the midst of it all, travel to the CWD Friends For Life conference in Falls Church, where Bennet and I unleashed the DPAC Diabetes Advocacy Boot Camp with some phenomenal guest speakers and calls to action. All good things. All important things.

Yes, I slept. Yes, I ate. Yes, I took time for myself. (Although in retrospect, reading a grant proposal with a highlighter in my hand while I got my hair cut doesn’t qualify as time for myself.) I was gearing up for a weekend conference that I not only wanted to attend, but had the privilege of helping to design as an advisor. On Thursday, I headed to Chicago, raring to go.


And I slept on the plane. Normally, once the flight attendant gives the signal that it’s OK to do so, I’m like a thoroughbred out of the starting gate, whipping the laptop out and working on projects and ideas while others watch cat videos. This time, while waiting to take off, I simply shut my eyes to meditate for a few minutes and the next thing I hear is the announcement that we were landing. That should have been my first clue.

Chit-chatting with the driver on the way to the hotel, I began to feel “off.” That “off” that you can’t really put your finger on, because you’ve done the mental checklist in your head:

  • Low blood sugar? Nope.
  • High blood sugar? Nope.
  • Food in your belly? Yep.
  • Could you be “real people” sick? Nope.
  • Hydrated? Yep.
  • Rested? Am I ever? But I just had a nap!
  • Is Venus in retrograde while you’re wearing itchy socks? Nope.

I assumed that it was a combination of getting off a plane and getting up early to get on that plane, but there was the little voice in the back of my head that said…  “Something else is going on.”

stop-1473017-639x772I checked into the hotel, intending to drop my bags and take a walk. That all changed when I opened the door to my room and a wave of exhaustion swept over me. Not a normal wave; a tsunami that scared me enough to text John and say: “I don’t know what’s wrong with me. What I am feeling isn’t normal. This is not normal exhaustion.” My smart husband told me to go eat lunch, then head upstairs and mediate for a few minutes.

A healthy lunch eaten and that meditation turned into a two and a half hour nap. I still felt tired. The next day, another long nap and still exhausted. When I asked friends why I might be like this (and saying that my blood sugars were in range and I wasn’t sick), the responses ranged from: “Could you be pregnant?” (Nopeity-nope-nope. The Kid will be an only child.) to “Have you checked ketones?” (Which was a smart idea and I didn’t have any.)

energy-1-1176465-640x512Everyone Should Know Rhonda.

And then I met Rhonda Waters. She’s part of the Johnson & Johnson Human Performance Institute, specializing in energy management. Not the kind of energy that keeps the physical lights on, but rather the energy that keeps the human lights on. During a reception at HealtheVoices16 (which I will share in a separate post as it deserves it!), I was introduced to her and joked: “Where were you yesterday when I needed you?”

I was trying to be funny, saying that I was tired and it wasn’t like me to feel like that. And she didn’t laugh, but rather talked to me about “forced recovery” which is what your body does when it’s void of  the mental, physical, emotional, and spiritual energy everyone needs.

I didn’t just listen. I heard and felt what she was saying. At that moment, I understood that if I kept depleting my energy, I was no good to myself, my family, my friends, and my community. The world will continue to spin without me attempting to direct its course.

At an energy break session on Saturday during HealtheVoices, a small group sat with Rhonda for what was supposed to be a quick 15 minute pick-me-up. An hour later (!), I left with words of wisdom from other advocates and Rhonda. My “ah-ha” for this conference was this:

“What would you say to a friend?”

Thunderbolt. And sadness.

What I would say to someone I cared about and what I had been telling myself were two very different things.

My question to you is this:

How do you know it’s time to stop before you get to “forced recovery” and what do YOU do to take time for yourself?

Right now (well, after this post) I’m reviewing my calendar and putting time in for me. And I’m going to stop removing those times that I had scheduled for me in favor of getting something else “more important” done.

I don’t want to stop. But sometimes, as I’ve learned this weekend, you have to stop before you can go.