The diabetes patient perspective
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This document discusses Manny Hernandez and the Diabetes Hands Foundation's efforts to support those living with diabetes. It provides information on the growth of their online communities for English and Spanish speakers, their advocacy work around issues like diabetes technology and costs, and campaigns to improve diabetes education and Medicare coverage of continuous glucose monitors. Statistics are given on the rising economic burden of diabetes in the US and projections that as many as 1 in 3 US adults could have diabetes by 2050.
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The diabetes patient perspective
- 1. The (diabetes) patient perspective Manny Hernandez @askmanny @diabetesHF
- 2. We bring together people touched by diabetes for positive change so that nobody living with this condition ever feels alone. @diabetesHF
- 4. http://www.flickr.com/photos/bernfarr/1737659464/ 2002: T2 Dx ✗ 2003: T1 Dx ✓ 2005: pump 2006: other PWD ♬ TIMELINE
- 5. Two communities… 35K ENGLISH-speaking members 1.3 million annual visitors 29K SPANISH-speaking members 1.3 million annual visitors
- 6. We go to bat for people with diabetes!
- 12. Yep! Those are BILLIONS, down there!
- 13. Cost of diabetes in the US US$ Billions $245 billion $245 $300 $250 $200 $150 $100 $50 $0 1997 2002 2007 2012 = Current State Budget of + http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html https://en.wikipedia.org/wiki/List_of_U.S._state_budgets
- 14. Diabetes in the US today 29.1 million people (9.3% of the U.S. population) have diabetes. “By 2050: 1 in 3 US adults could have diabetes”
- 16. The Story of Richard… #MedicareCoverCGM #DiabetesEd4All
Editor's Notes
- Hi, I am Manny Hernandez – Co-founder and President of Diabetes Hands Foundation.
- Since 2007, at Diabetes Hands Foundation we have been focusing on Bringing together people touched by diabetes for positive change, so that NOBODY living with this condition ever feels alone.
- In the spirit of talking about biotech and diabetes, I felt it was appropriate to mention that Last Friday we celebrated World Diabetes Day. It was the 123th birthday of Frederick Banting, a Canadian scientist credited with the discovery of insulin, The very first diabetes technology!
- I used to not have diabetes. But in October 22, 2002: I was told by my primary care physician that I had diabetes… just as I was starting a new job. I started blogging about my life with diabetes then. Here’s what I wrote. For several months, I was unable to keep my blood sugars in control. My primary care physician referred me to an endocrinologist: this is not an uncommon story. In 2003, I was correctly diagnosed as having LADA, Latent Autoimmune Diabetes in Adults (not type 2 diabetes), an autoimmune form of diabetes that appears in adults. In 2005, I started wearing an insulin pump: after my blood glucose meter, this was my first encounter with a diabetes technology that changed my life. it wasn’t until 2006 that I finally met other people with diabetes, just like me, at an insulin pump users group. That meeting changed my life: in a matter of an hour, with my peers, I learned more than I had in four years living with this condition by myself. THIS is why we created the Diabetes Hands Foundation.
- In 2007, we created two social networks, TuDIabetes.org (in English) and EsTuDiabetes.org (in Spanish) for people touched by diabetes. Today, they have more than 65,000 members, and receive 2.6 million annual visitors, more than half of whom are US-based.
- To talk with FDA in person… This was Nov. 3 when we held the first ever Town Hall with FDA about unmet needs in diabetes. Also we’ve participated in numerous FDA Advisory Committees, bringing the voice of the diabetes patient to rooms where, until not too long ago, it was painfully absent.
- We also take selfies in Capitol Hill.
- We patients have what I would describe as a love-hate relationship with our technology. You see, it doesn’t always work, quite… perfectly. So sometimes we go Al Pacino on it.
- And then something like this happens! [EXPLAIN WHAT IS GOING ON IN THE IMAGE] Actually it happens so often, that you are constantly reminded of how diabetes technology saves lives!
- While I am hopeful about the future as far as diabetes technology is concerned, Frankly I am very concerned about the overall trends in diabetes, And how policy seems to be going in the wrong direction.
- For example, take hypoglycemia: It has an INCREDIBLE economic burden!!! This is a photo of a slide by Dr. Robert Vigersky, an endo at the Walter Reed Medical Center and a leader in diabetes tech. And these numbers don’t even include figures such as lost productivity, ambulance trips that get cancelled b/c the person with hypo was able to rebound and didn’t require an emergency room visit. These are strictly figures based on hospitalizations due to severe hypos.
- You see hypoglycemia has an INCREDIBLE economic burden This is a photo of a slide by Dr. Robert Vigersky, an endo at the Walter Reed Medical Center and a leader in diabetes tech. And these numbers don’t even include figures such as lost productivity, ambulance trips that get cancelled b/c the person with hypo was able to rebound and didn’t require an emergency room visit. These are strictly figures based on hospitalizations due to severe hypos.
- Or the TOTAL cost of diabetes to the US in 2012 (that was two years ago!): It is equal to the current state budget of California AND Texas, COMBINED! And it’s NOT slowing down, in fact it grew by 40% between 2007 and 2012.
- That is: TODAY, only ONE state (California) has a population larger than the total number of people diagnosed with diabetes.
- So it really drives me nuts when I see things like these… A flawed Durable Medical Equipment Competitive Bidding process put together by CMS that puts diabetes patients at risk.
- Or the story of Richard. He is 75 years old today and he has lived with type 1 diabetes for almost 70 years (he is a Joslin Medalist). His control was SUPERB! Recently, after retiring, he confronted an ugly reality: No coverage for CGM by Medicare and Medicaid, limited coverage for pens and pumps in Medicaid, and no diabetes education in Medicaid. --- Richard Vaughn Born in 1939 in rural Virginia, Richard was diagnosed with type 1 diabetes when he was 6 years old, a mere 22 years after insulin was discovered. He is approaching 70 years with diabetes, and he has been able to accomplish that (and do it with health) in no small part due to the advances in diabetes therapies and technologies of the past several decades. However Richard now lacks coverage of many diabetes tools (continues glucose monitoring within Medicare and Medicaid) and finds limited coverage for insulin pumps and insulin pens within Medicaid, which has already resulted in his diabetes control taking a turn like he hasn’t seen in decades. We… YOU owe it to people like Richard, so that they may continue to live a fruitful life, and inspire millions of others to do the same thing. (Or something along these lines).
- Or, on a state level, a bill that we challenged (and CHI also opposed) fortunately didn’t get voted on: Had it become law, AB1893 would have brought about an unprecedented patient mandate That EVERY purchase of a sharp (lancet, syringe, needle) be accompanied by the purchase of a sharps container. This may not sound like a big deal, but the problem is that there’s not enough room in our homes to fit that many sharps containers. And besides being incredibly discriminatory against people with diabetes, the bill had numerous flaws that meant it was not going to solve the problem it was designed to address. This was a major distraction of advocacy time and energy, but at least it was a victory, unlike the case with Competitive Bidding.
- Diabetes technologies, as I have told you, save lives… millions of them, not only here in California, but the rest of the US and worldwide. For that, I have to thank you guys! But the reality is that we are facing a perfect storm. The Katrina of healthcare is upon us, and it will take ALL OF US: - Patients and advocates mobilized; Industry aligned to ensure access; Payers realizing the business sense it MAKES to invest in treatments, and Legislators facing these realities and putting the right policies in place TO save us from a potentially catastrophic epidemic. Money invested in prevention, detection, and treatment of diabetes TODAY will help prevent disastrous FINANCIAL consequences for our country TOMORROW. (And to the legislators in the room, please: don't make us spin our wheels to oppose bills that make no sense like AB1893!) ;) Thank you!