Hace 12 años que te fuiste, el 16 de enero del 2005… víctima de un cancer de hígado fulminante que te llevó en cuestión de días, después de descubrir que tenías cancer. Nos sentimos tan impotentes!
Siempre pienso en ti, viejo. Te recuerdo: tus chistes malos con tu incredible sentido del humor (los cuales heredé), tu amor por la humanidad que siempre empezó por casa, y tu sabiduría que me ha guiado desde que te fuiste.
Mamá sigue deteriorándose. Hace una semana la mudamos a skilled nursing porque se negaba a recibir la atención que necesitaba en assisted living. No te voy a negar: es duro ver su mente apagarse poco a poco: siempre cree que soy mi tío. Pero una constante es que aún te recuerda: la tuya es una de las fotos que tiene en su cuarto.
En fin… te queremos y te echamos de menos, papá. No dejes de echarnos un ojo desde donde estás.
Today, when I woke up I found an email in my Inbox from Animas Corporation, the J&J company that makes my insulin pump. The email was in regards to a cybersecurity vulnerability identified in the Animas insulin pump, that under certain fairly extreme circumstances could give a person “unauthorized access to the pump through its unencrypted radio frequency communication system.”
I tweeted about it, and I was a confused with the first response to my tweet (which was merely meant to inform my peers in the #DOC), indicating that the fact that there was an unencrypted communication channel was a feature of the pump. The conversation quickly started taking a different tone: “I think the opportunities of open comm are worth more than the paranoia of pump hacking for evil. #MyTwoCents” I replied with this comment:
A few yrs ago, I may have agreed with you. But in recent years the world has shown us a very ugly face. Balance bet safety & efficacy needed https://t.co/LvfCfzxika
Several hours later, I found my Twitter notifications exploding with replies, RTs and Likes opposing my comment and asking me to “show where this is a legit risk that doesn’t read like a bad Tom Clancy novel“. I quickly realized I was in way over my depth, and Twitter is a terrible place to explain complex things, so I decided to blog about it.
There are many friends in the diabetes community that I have tremendous respect for, and I feel I owe it to them to write this, because I don’t want a series of tweets in any way to be interpreted as lack of support for the way way in which they have contributed to the advancement of things in diabetes technology. Of course, I am talking about the folks behind the #WeAreNotWaiting movement, and the folks at Tidepool.
At the same time, and maybe because I have been in industry since May 2015, I don’t think the only two options are either completely open and unencrypted channels to communicate with insulin pumps OR proprietary and encrypted protocols. Traditional paradigms can lead us to believe that, but we live in a new world, the world I was referring to in my initial tweet, that has shown us a very ugly face in recent years. This is the world that author Joshua Cooper Ramo talks about in his amazing book “The Seventh Sense: Power, Fortune, and Survival in the Age of Networks“. The central idea in the book:
Connection changes the nature of an object…
This notion can be best understood when you consider that incredible connection-enabling tools like Twitter were central to facilitating the Arab Spring, and have recently become a recruiting tool for terrorists. We are not in Kansas any more. This is not about Tom Clancy or science fiction: all it (sadly) takes is to look around us and pay attention at the Presidential Campaign, to remind us of how different a world we live in.
So what will it take to avoid stifling innovation? How to balance it with the mandate to empower AND protect the health and lives of the patients we serve?
We should not defend vulnerabilities: we need to advocate for secure communication protocols that are exposed in a responsible manner (I am not an expert on this topic, but as an optimist it strikes me as doable) to the research and development community. To this end, I like Howard’s idea of an “innovation switch” introduced last month at the NIH-NIDDK Artificial Pancreas Workshop.
This may or may not come from the incumbent companies. It remains to be seen, but when I see what BigFoot is doing (including a crypto-chip in their upcoming pump):
and what Tandem is doing (their t:slim G4 pump exceeds the highest standards as laid out by the Diabetes Technology Society), I feel hopeful about a future where we won’t need to wait five years since a vulnerability on a Medtronic pump was first identified by a hacker with type 1 diabetes like Jay Radcliffe to identify a similar vulnerability with the Animas Ping pump, before action is taken.
My name is Manny Hernandez. I have lived with diabetes since 2002, at age 30. Since then, I have engaged in diabetes advocacy, co-founding the Diabetes Hands Foundation (where I now serve as a Board Member), and always looking to bring the voice of people with diabetes anywhere there’s a policy or decision made on our behalf.
Since I was diagnosed, Diabetes Self-Management Training has given me the tools to take the best care of myself as I live with diabetes, and I have gone back for more training over the years, as I have changed therapies, changed providers, changed plans… as life has gone on. I have been fortunate to have access to DSMT when I needed it, but copayments and deductibles get in the way of scores of people who need it (and could see their long term outcomes improve drastically) but cannot afford it.
Having met hundreds of Diabetes Educators over the years as part of my advocacy work, I have become painfully aware of the challenging and limiting circumstances in which they operate, always putting the patient’s needs first. We should make their work easier, not harder. They should be able to deliver Diabetes Self-Management Training in a sustainable way, which they often cannot do given the reimbursement structure faced today and even the proposed one (G0108 and G0109).
The journey of people with diabetes is not linear: it’s full of valleys and peaks, as the condition evolves, life happens (with its challenges), and you need to adjust to new realities, in- and outside of diabetes. While you may not need Diabetes Self-Management Training all the time, or every year, beneficiaries should not lose their initial 10 hours of DSMT if it is not completed within the first 12 months after referral. You will ALWAYS have things to learn and adjust with diabetes, and not acknowledging this reflects an approach that overlooks the realities of people living with diabetes.
Similarly, people with diabetes should be able to access Diabetes Self-Management Training in their communities, not HAVE to be constrained as to the setting in which they can receive it. How do you best impact people you want to help? Meeting them where they are: so constraining options for them limits access too. Let’s not do this.
Diabetes Self-Management Education needs to become a benefit that ALL people with diabetes have access to. It has the potential to turn the tides of this epidemic in the US, and its associated cost, by empowering people with diabetes with the tools to make the best possible decisions about their day-to-day care, AS they go about their lives. But this can only happen if we effectively remove barriers to it, and make it affordable to patients throughout their entire diabetes journey, sustainable to providers, and accessible in as many possible formats and settings as possible.
As a result, I appeal to CMS to consider the above elements from the perspective of the person with diabetes and I express my full support of the proposals of AADE, ADA, and Academy of Nutrition and Dietetics, AADE to help increase access to Diabetes Self-management Education for people with diabetes in the United States.