DiabetesStrong agrees flourishing is the way to look at diabetes

I met Christel and her husband Tobias at the Afrezza product meeting we attended a few months ago. They founded and run the web site DiabetesStrong and frankly – they are. Christel has had type 1 for 20 years and Tobias has her back.

Screen Shot 2018-05-23 at 3.11.44 PM.png

We got to talking and Christel asked if I would write a guest post on my mantra, “flourishing with diabetes.” It’s now resting comfortably on the DiabetesStrong website.

Through the grace of Sanofi, we reposted an article I had originally written for Sanofi DX a few years ago. It captures exactly the sentiments Christel and I are excited about –  that living with diabetes you can do more than cope, you can flourish.

Since as far as I’m concerned classics are always in, it’s nice to report this classic. Or, would this be considered regifting? In any case, if you want to be inspired hop on over to DiabetesStrong have a read and a look around the site that covers it all – food, nutrition, recipes, exercise, technology, products.

You won’t help but come away just a tad diabetes stronger.

Stanford Medx’s April conference theme – Innovating on medical education

 

S Medx.jpgTwo weeks ago I presented my Flourishing Treatment Approach (FTA) at Stanford Medx. The conference theme was innovation in medical education. The FTA is surely one.

It is a science- and neurology-based method of working with people, seeing them as resilient beings with strengths and capacities. The FTA and its tools recognize the possibility of flourishing in life with a chronic condition, not merely coping. Even, and often, not despite but because, of one’s condition.

While the number of attendees was small, around 150, immediately apparent was how many “patients” were participating. My hat’s off to this conference which says it is the intersection of people, technology and design, placing patients and caregivers at the center of medical education, in partnership with medical learners and teachers.

Many people were walking with the use of canes, others with a slower gait, others with heads covered by colorful scarves. Adam, whom I met, has a brain tumor and a prognosis of three years to live. Yet he and everyone I met, while at moments facing their hard truths, were inspiring.

The day before the conference began one of my heroes, Dr. Victor Montori, Professor of Medicine at the Mayo Clinic, gave a Master class where we looked at how to fix our broken healthcare system.

Montori reminds me of the fabled character Don Quixote, brave against all odds. He spoke of the inherent conflict between healthcare, which is a profit-making business, and “care” as a means of individuals coming together in love and relationship, where clinicians come from service. Montori’s professional quest, beside being this emissary of care for his patients, is taking up the challenge to humanize and de-industrialize modern medicine.

“Without a relationship of love,” said Montori, “care cannot happen.” So while empathy was a centerpiece of the conference, along with design-thinking, few speakers were brave enough to say true empathy cannot happen without love.

I also admire the conference’s other keynote speaker Bon Ku, MD and Assistant Dean for Health and Design at Thomas Jefferson University. He gave a fascinating and revealing presentation on how design works and doesn’t work in today’s hospitals and education of medical students, and how we can design more caring communities.

The healing power of story-telling and story-listening, admitting to failures in medicine, changing our language to change thinking and attitudes, were all centerpieces of the conference, as well as an inspirational message from a doctor with a spinal cord injury who shared the bias he had encountered on his professional medical journey.

It is a ripe time to enlighten our medical students before they become fixed in what they learn to better understand the lived patient experience. Otherwise, how can we expect our future clinicians to be able to keep people healthy and well over the long term?

It is time we have more conferences like this that break down the walls between provider and patient and build bridges.

Top 2018 diabetes blogs and organizations celebrated by Healthline

Screen Shot 2018-05-08 at 12.32.06 PM.png

It’s nice to be recognized yet again by Healthline as one of the best Diabetes Blogs of 2018. The recognition bestows merit for quality content among other criteria, and specifically for my work, the Flourishing Treatment Approach which helps expand the way we look at diabetes treatment. I am honored.

Here are just a few of my fellow bloggers on the list:

DiabetesMine

Scott’s Diabetes

A Sweet Life

Diabetesaliciousness

D-Mom Blog

DiabetesDaily

Six Until Me

Diabetogenic

There are almost another 20 web blogs and sites collected here including diabetes organizations. Frankly this is an amazing list of online resources for education, information, community and support.

SUBMISSION: Lastly, Healthline is celebrating and showcasing people who have tattoos that were inspired by their diabetes. If that is you, you can get more details to share a photo and your story here.

Mannkind’s Afrezza is a game-changer to manage blood sugar

 

I admit it, had I not been invited to a two-day meeting to learn about inhaled insulin, Afrezza, I would still have the same general misconceptions most people do about the product. Primarily, that it may damage your lungs. Secondarily, that as a type 1 I can’t use it because the smallest insulin dose is marked ‘4 units.’ But I have been educated, and I have converted my own views now learning what a fantastic add-on to my blood sugar management Afrezza can be. I know many type 1s use the product and have said the same before me.

Mannkind manufactures Afrezza and invited about a dozen online diabetes advocates to meet with their senior leadership team at their office complex in Danbury, Connecticut. Readying themselves to get the word out about Afrezza in a much bigger way, they wanted to familiarize us with the product and learn from us how they should use social media.

Factory tour.JPGFour dynamic fellow diabetes advocates. From left to right Kelly Kunik, Christel Oerum, Meri Schuhmacher and me.

After a lovely meet and greet dinner Monday night, the formal meeting began Tuesday. After introductions we had a factory tour, seen above. Both the inhalable insulin compound and inhaler are manufactured right at their facility. We also got and a detailed explanation how Afrezza’s crystal insulin compound is created and gets broken down and into the lungs and bloodstream. We actually tested whether we were breathing it in properly and we all quickly agreed on the necessity of making sure people get instruction on how to breathe it in or you could miss your dose.

But what I learned in the afternoon from CEO Mike Castagna and CMO David Kendall was well worth the trip. I’ve listed the major points below. Principally, that Afrezza begins working as soon as you inhale. It travels to the lungs and within seconds crosses over to the bloodstream. All this occurs in less than a minute. The mere speed of Afrezza is stunning when you are used to rapid-acting insulin. And that means spending much less time having high blood sugar.

Mannkind has a wealth of positive data from clinical and comparative trials with injectable insulin because they’ve actually been in the diabetes space for years. In the last year or two they partnered with Sanofi which didn’t work out, yet unfazed, leadership are passionate about their product and bringing it to the public.

As a small company devoted currently to one product they are the “David” amongst the “Goliath” pharmaceutical companies ike Novo Nordisk, Lilly and Sanofi. But expect to be hearing about them over the coming months. In the meanwhile –

What I learned:

  1. Afrezza begins working in 12 minutes, peaks in 35 and is mostly out of the body in 90. Compare that to any rapid acting insulin (Humalog, Novolog, Apridra). Because injectable insulins need to go through layers of skin and fat and get transported to where they can get absorbed, they take 20 plus minutes before they start working, two hours to peak and leave the body in 4 to 7 hours. I know my biggest annoyance with insulin therapy is how long rapid acting insulin takes to start working. Part of this problem is the liver continuously puts a small amount of glucose into the bloodstream. When your blood sugar is high, the liver continues to do this until your insulin starts working. With Afrezza, beginning to work almost immediately, the liver shuts off its glucose output into the blood and you now have two mechanisms helping your blood sugar come down.
  2. Clinical trials show no evidence of lung damage, people show lower A1C, spend more time in range and Afrezza reduces severe hypos by more than 30%.
  3. The Afrezza cartridges of inhaled insulin come in 4, 8 and 12 packs yet they don’t translate into injectable insulin in the same unit amount. For instance the 4 unit pack actually works like 2-2.5 units of rapid acting insulin.
  4. Currently Afrezza users are 50% type 1s and 50% type 2s. In fact, some type 1s who use a pump use Afrezza for their meal-time insulin because of its quick action.
  5. Afrezza can cause weight loss for some. Reading point 1 again on the list, often you have to take so much insulin to come down from a high you end up going low and then have to eat to treat the low. With Afrezza, avoiding the spike, you avoid the extra calorie intake.

Mannkind is working hard to help people go through the process of getting Afrezza approved by their insurance company. I know for myself, anytime I approach my insurance company for a newish diabetes product I have to go through prior authorization from my endo and sometimes three attempts before I get approval. Word on the street has it that health insurance companies have been advised to reject many drug requests on the first ask and it is those who persevere who often get that rejection overturned.

Because I am an insulin-sensitive type 1 who follows a low carb diet I am disappointed I cannot use the product for most meals. The dose would be just a bit too much. I have, though, almost not believed my eyes when I have taken it when I am over 180 and watched my blood sugar slide back down to where it should be in just half an hour. Gorgeous.

So I plan to use Afrezza, provided I can get it from my insurance company (I tried a 6 pack sample my doctor gave me) to correct highs and when eating the occasional pizza or pasta.

All in all, it was an enlightening two days and as always a delight to spend time with my fellow diabetes friends and acquaintances I don’t see often enough. Thank you to Mannkind’s Mike, Chad, Joe, David, Matt, Azul and Naomi for bringing us in to hear the patient voice and to be part of the strategy roll out.

Disclosure – My expenses to attend the meeting were covered and an honorarium was paid. However I was not asked to write about Afrezza.

#8 – HuffPost, “I think she’s drunk.” I wasn’t, I was in severe hypoglycemia

If you’ve been here a time or two before you may know I’m doing a countdown on 10 top posts I’ve written over seven years for the Huffington Post.

This was one of my last posts and the first time low blood sugar made me feel, and appear, as if I was drunk. My blood sugar was in the 30s and my mind absolutely refused to think straight. Luckily, I was with a friend, and while she had no idea this could be low blood sugar, she knew something was really wrong.

 

What It’s Like to Get Diagnosed with Type 1 Diabetes: Real Talk from Patients

 

Screen Shot 2018-04-09 at 4.50.55 PM.png

Last year I was part of a video shoot for HealthiNation to talk about type 1 diabetes. Now there are 7 short and accessible, two minutes in length, videos of what it’s like to get and live with T1D.

Each video features reflections, learned wisdom and snippets of advice from myself and two other diabetes advocates. Topics range from the title above, “What It’s Like to Get Diagnosed with Type 1 Diabetes” to “Common Myths About T1D Debunked” …to…“Getting Through the Day as a Diabetic.”

Please ignore the fact that the producer chose to call us “diabetics” and “patients,” which we only are when with our health providers, and that some of the videos begin with a Trulicity advertisement.

Rather enjoy the opportunity to bask in the camaraderie with two fellow T1D-ers – Craig Kasper, diagnosed at 27, whose website is bravest and Liz Van Voorhis, diagnosed at 15, an athlete and fitness trainer, and yours truly nearing ever closer to that 50 year Joslin medal.

All videos can be found here.

 

Dexcom G6 CGM gets FDA approval

 

Expected to be available in the U.S. in the next few months.

New advantages – no fingerstick calibrations, easy inserter, 10-day wear time, (bad news hard shut off, you can’t extend the sensor) approval for ages 2 years and older, no acetaminophen interference.

Mike Hoskins over at DiabetesMine did a great write- up.

Love the video, if nothing else the music will get you excited –

The Type 1 Versus Type 2 Diabetes War

HuffPost #7 – For this post I reached back to my second year writing on HuffPost. But the story is as relevant today as it was then.

There’s long been a friction of sorts between type 1 and 2. A sense that “you don’t understand what it’s like for me” no matter which side you’re on. The feeling among many type 1s that they live in the shadow of type 2, and a difference of opinion whether either side would benefit if we were more distinct?

That along with myths busted from my second book, “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It” and more in this post, including a full and clear description of each condition.

Unknown.jpeg

 

 

JDRF trains type 1 diabetes specific psychologists

Screen Shot 2018-03-19 at 3.16.45 PM.png

I think this is great news. And I wrote about it on Thrive Global. I know there’s always been a raging debate where the JDRF should put its efforts. Many think only on research toward a cure for type 1 diabetes (T1D) or also helping people live wth the day to day of T1D.

I’m in the latter camp. I’d love a cure, but until that day I’ll take anything that helps make getting through the day easier. Not only will psychologists who understand the lived experience of type 1 diabetes help those who are struggling, but help us all. Find out how in the post.