As we work our way through the list of Patient Voices Scholarship winners who'll be joining us for the 2015 DiabetesMine Innovation Summit this November, today we're happy to introduce longtime type 1 Joanne Milo in California.
Residing in Orange County with her husband and furry friends (two dogs), Joanne has been living with T1D for the past 50 years. You may remember Joanne as author of the book The Savvy Diabetic, which we reviewed here a couple of years back. Joanne has also been very active in the DOC (Diabetes Online Community) blogging about life with D and some key new technologies. She's also been busy creating product review videos for our Test Kitchen hub, and today we're excited to share this talk with her.
DM) Joanne, we always like to start off with your diabetes story...
JM) I was diagnosed on January 25, 1965, a late Monday afternoon, wintertime in New York, sitting in my pediatrician’s office with him and my mom… with my mom crying. I had just turned 11, and had been feeling sick for about a month and lost weight. I was not hospitalized for which I am grateful. I was pretty scared enough.
My mom and dad worked to understand everything they could. My mom was nervous, my dad was calm, my sister was angry. It was a rocky time for our family. Later my dad threw himself into fundraising and diabetes fairs.
Throughout high school, I spent the two-week Christmas holiday, every year, at the Joslin Clinic. It was dismal -- while all my friends got to stay home or go south on vacation. Many years later, I came to appreciate all that I learned there. Many years later even, I even thanked my parents for their efforts and love.
What were the first diabetes tools you used?
My dad got me one of the first home blood glucose meters, the Ames Eyetone Reflectance Meter. It was clunky and not terribly accurate and very expensive (I think it was about $400 in 1970 dollars). But that started me on the path to wanting and using all the newest technology that I could get my hands on.
That led to portable meters, smaller syringes, smaller needles, CGM and the hopes for integrated data software, smart insulins and the artificial pancreas. I never thought I’d live to see all this. I've recently had the chance to participate in a patient panel on CGM for the Diabetes Technology Society. And I organized a small meeting with my support group with Dr. Jonathan Lakey (of the Edmonton Protocol) last week, and he is talking about “cure." It’s exciting times!
So you were diligent in using everything you could get your hands on since you were a teen?
Actually no. I did survive my teen years and college (it was a bumpy and uncontrolled ride). And I started to get under better control and understanding just after grad school.
For several years, I took a diabetes involvement vacation… just didn’t want anything to do with diabetes, diabetics, fundraising or discussions about technology, since I wasn’t seeing much progress.
Sounds like D-burnout... how did you get motivated or connected again?
I started to participate with a local support group for adult T1s, all women, called Girls’ Night Out (GNO), and ended up managing the group, mailing list and meetings. We have grown from about 30 members to over 65 members, and we have included a few brave men in the group. Our meetings range from just social potlucks to informational programs on topics such as off-label meds, emotional coping and cell encapsulation research. At the same time, I’ve started as co-chair of the JDRF Adult T1 committee, which presents programs about three times per year, on topics of current interest (including non-insulin therapies and the first-ever Nightscout workshop and presentation.
After a few years with non-diabetes-related hospitalizations and surgeries, I became acutely aware of the dangers of being in the hospital and “out of control” of my own care. So I decided to write a book, as a primer to help folks with diabetes manage hospitals, doctors, travel and family life. It’s called The Savvy Diabetic: A Survival Guide, and I’ve gotten lots of amazing positive feedback.
What else have you done on the diabetes advocacy front?
From that, I’ve been working on a blog on my website, www.TheSavvyDiabetic.com, and also began to interact with the Diabetes Online Community, doing guest posts, product review vlogs and online panels. And I’ve become active with advocacy, born out of my frustration with my insurance (Medicare Under 65) refusal to cover my CGM. I fought the decisions up to the 4th level appeal and was turned down consistently. Since then, I’ve lobbied for legislation, both online and directly in my congressmen’s offices.
Last summer, I had the opportunity to attend the AADE (American Association of Diabetes Educators) annual meeting in Orlando (yes, Orlando is NOT the place to be in August!) as a press member. And I subsequently joined AADE and became certified as a Diabetes Educator Level 1 (the new entry level certification).
Wow, nice job on the D-edcuator certification! What else have you done professionally?
I live in the OC (Orange County, CA) with my husband and two joyful doggies.
While I am mostly retired, I write and blog and consult and support. I also am involved in a dog web-based business, I design and make paper crafts and jewelry, and my husband and I mentor several young college students from disadvantaged backgrounds (who are all doing REALLY well!).
What's been the most encouraging thing you've seen in the evolution of diabetes tools and treatments over the years?
Having started in 1965 with Tes-Tape and Clinitest (for urine testing), I thought BG meters were the greatest inventions since sliced graham crackers (used for bedtime snacks at the Joslin Clinic in the early days!). But it never occurred to me to question the accuracy of the meters until recently. That kind of shook my faith.
Then, certainly the insulin pump, with its continuous drip of insulin. Along with the pump, I actually learned about carb counting -- as opposed to mealtime guessing.
But the most exciting for me has been CGM (continuous glucose monitoring). I jumped on board as soon as I could. I was waiting for the Abbott Navigator but Dexcom came out first. The early version was so wonky that I suggested it was merely a random number generator, and even said so on a panel at a Diabetes Technology Conference. I loved my Navigator (although the insertion really hurt) but then that product went away. So I swung back to Dexcom and have been with them ever since.
What do you think is missing now as far as diabetes innovation?
ACCURACY - Seriously, if we are trying to make life-changing decisions on a daily/hourly basis, faulty data is just that, faulty! While I understand that technology is advancing as fast as it can, but it feels like there's a lot of complacency from the manufacturing world, as opposed to striving for excellence. Kind of like, “it’s good enough and better than (what patients) had it before.”
INFORMATION - Why can’t I see all my data on one chart? If I am making decisions on insulin dosing, shouldn’t I be able to see my full history and what worked and what didn’t work?
PATIENT-CENTRIC DEVELOPMENT - Seems like a lot of the technology is still developed in labs without serious consulting with the actual end-user, the person with diabetes. I was heartened to see that Asante Solutions (makers of the now-defunct Snap pump) actually requested input from patients and then actually incorporated changes that addressed the needs.
STANDARD INSURANCE COVERAGE - for all FDA-approved devices and technologies. If the FDA says it’s OK and the doctors prescribe it, who the heck are the insurance companies to say, 'No, you can’t have it'?
The most exciting changes seem to be coming from Nightscout and the #WeAreNotWaiting movement. They are making changes constantly and responsively. Unfortunately, some of what they develop feels a bit too techy. I’m not quite sure even what questions to ask or what the answers really mean. But they are constantly willing to try and explain and innovate.
So what do you think developers need in order to innovate in ways that truly improve our lives?
A better understanding of how we use our technology and then developing the complete solution. I used to say that all I wanted was pump-CGM integration. So then Animas comes out with the first approved “integration." It used the old Dexcom algorithm (thank you FDA). And it is not truly integrated. And perhaps I don’t want to pull out my pump all the time to see my BG.
Tell us a bit more about the life hack(s) that you submitted as part of the Patient Voices Contest?
I use several tricks to make things easier.
First, a portable used-test-strip holder made out of a little plastic case in which memory cards are sold. All you have to do is cut a little opening and easily slide in the used strips. I keep mine in my testing kit in my handbag.
Then, for my sugar-to-go I use Jelly Belly jelly beans for lows. They taste way better than glucose tabs and each bean is about 2g carb. A small handful should take care of most lows. And they simply do not melt.
I was even in a presentation by Scott Scolnick of the Bionic Pancreas, and I saw him reach into his briefcase and throw a handful of jelly beans, exactly like what I do! I felt so validated!
I bought a travel-size plastic container at a local pharmacy and I keep my beans in it. Easy to stick in a purse or briefcase, easy to dispense as many beans as needed, and it’s colorful!
What motivated you to enter our Patient Voices Contest?
I think I am a technology junkie. I want to try everything that is new and may be an improvement for my life with diabetes. I also feel that, with a lifetime (or so it feels) of living with diabetes, I'm compelled to give back. I’ve been bounced around with diabetes and I just want to help make it easier for others.
And the opportunity to interface with... all the parts of the diabetes world is exciting. While I am continually grateful that I have access to all the new stuff and I can afford it and understand it, I think a lot of the diabetes “enterprise” is not working well for those with diabetes. I have to remind myself that those in the “diabetes business” are just that -- in business to make money. And sometimes the higher order of providing for those with a seriously life-threatening disease gets lost among regulations, policies and the financial incentive. I’ve seen companies “crush” others on patent rights, and the big losers are those with diabetes.
What are you looking forward to at the Innovation Summit?
- being among action-oriented T1s with passion and great ideas
- the opportunity to interact directly and honestly (I hope) with significant decision-makers in pharma, FDA, and insurance
- helping be productive in moving forward the initiative that started years ago
- feeling heard and bringing forward issues and concerns that I hear in my local community
- bringing back hopeful feedback and hopes of
change/improvement to share with other T1s
Thanks for sharing your story, Joanne. Looking forward to seeing you in November!