Advocacy

The new doctor: the patient

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new patient

As the number of people with diabetes continues its astonishing rise – from 26 to nearly 30 million and in pre diabetes from 79 to 86 million – the number of endocrinologists who specialize in their treatment remains flat. 

There are roughly only 5,000 endocrinologists and 19,000 diabetes educators across the country today. How are we going to take care of the millions more people with diabetes adding to the statistics every year?

Few primary care providers refer patients to a diabetes educator and most patients with Type 2 diabetes are treated by their family doctor. Unfortunately, many are not up on the latest research, medical guidelines and/or drugs – and don’t want to spend the time titrating new patients on insulin.

But an unexpected and critical new member of the diabetes team has lately appeared: the highly informed or ‘smart patient.’ 

More and more smart patients are filling the educational gap – and filling a gap health care has been slow to recognize, the — “I get it” gap. To be blunt, health practitioners who don’t have diabetes for the most part simply don’t “get it.”

Looking at how patients are inserting themselves into the health landscape, we should be encouraged by our influence to continue and congratulate ourselves. We are making a crucial difference to thousands, maybe millions, of others living with diabetes.

The educational influence of patients

Since the first social media sites began popping up to widely share  knowledge, advice, experience and wisdom, offerings have grown more sophisticated catering to specialized audiences — Type 2s, Type 1s, parents of children with diabetes, women, athletes.

8 note-worthy social media/blog sites:
Children with Diabetes
DiabetesDaily
DiabetesMine
DiabetesSisters
Glu
Mendosa
SixUntilMe
TuDiabetes

Further, take a look at this year’s Top 10 recognized social health makers in diabetes. 

My first inkling that patients held sway was five years ago when Roche invited 30 top diabetes bloggers to their headquarters to better understand how to talk to their customer base online. Several other pharmas, including Medtronic and Eli Lilly, quickly followed suit.

More recently, patients have taken the stage at major diabetes conferences – the International Diabetes Federation World Congress, American Diabetes Association, American Association of Diabetes Educators and Children with Diabetes’ Friends for Life – sharing personal wisdom, device knowledge, social media information, and their distinct expertise.

I conduct workshops with health care providers to help them extend their repertoire from working with people with diabetes from a “coping approach” to a “flourishing approach”. 

Kelly Close, editor in chief of diaTribe, who has type 1 diabetes, said one of the most notable developments at the recent 74th American Diabetes Association Scientific conference, where more than 17,000 top diabetes medical professionals, scientists, researchers and trade people gathered, was the room given to the patient voice.

 

innovation summitAmy Tenderich, founder of the top patient news-reporting blog, DiabetesMine, has been running an annual Innovation Summit at Stanford University School of Medicine for four years. Patient advocates, device designers, researchers, clinicians, pharma R&D leaders, mobile health experts and regulatory experts gather to develop new ideas, products and tools to improve life with diabetes.

Two years ago big pharma, Sanofi, launched a similar initiative. Patients are nimble and quick where corporations and institutions often are not. A few months ago Tenderich launched “TestKitchen,” video reviews of diabetes products by and for people with diabetes.


Patients as mighty advocates

Diabetes blogger, Kim Vlasnik, launched her inspirational video, “You Can Do This”project three years ago from a personal passion to validate and share “honest talk” among people with diabetes and their loved ones. It’s popularity is the benefactor of the “I get it” factor.

The Diabetes Online Community this past Valentine’s Day asked people to buy their ‘Valentine’ 11 roses instead of 12 and contribute the change left over to Life for a Child, the humanitarian organization that provides clinical care and insulin to children in developing nations.

The campaign brought donations from 24 countries and raised more than US $27,000 dollars. That’s an additional year of life for 454 children.

 

stripsafelyBennet Dunlap, who has two children with type 1 diabetes, created StripSafely. It’s hard-charging message – to tell the FDA that people with diabetes want glucose test strips checked for accuracy both before, and after, they enter the marketplace – was driven across the diabetes space by advocates.

Last March, Bennet hosted a Q&A webinar with the FDA whose public docket on meter accuracy received record levels of comments from the diabetes community. The FDA is now creating a post-market surveillance-testing program.

This is a mere slice of what patients are doing – and only in diabetes. 

AtPatientsLikeMe patients are tracking and sharing their health information, according to the Company on more than 2,000 conditions – from medical diagnosis to treatment plans and outcomes. In addition to patient-sharing, data from this rich repository of real-world experiences is being shared with pharmaceutical companies to improve and quicken drug development and treatments. 

When I wrote my second book in 2009, 50 Diabetes Myths That Can Ruin Your Life, my book agent said we’d never sell it without a doctor’s name on the cover. She was wrong, only my name is on the cover, but five medical experts who vetted the work are prominently listed inside.

Now, every month, books written strictly by patients appear in my mailbox.

Peer-mentoring is supplementing healthcare

Medscape’s article, “Peer Coaching Improves Glucose Control in Diabetes,” confirms both the value of peer-coaches to help create clinical improvements in patients and their ability to fill the gaps where primary-care providers are in shortage, particularly in low-income and rural areas.

Since 2007 I have been a peer-mentor in the Sanofi A1C Champion program. Having grown from three peer-mentors in 2003, today 87 of us contribute and criss-cross the U.S. on any given day delivering five different educational programs.

Henry Anhalt, D.O, Interim Head of Sanofi U.S. Diabetes Medical knows the strength of the program, and of patients. As Anhalt told me, “We recognize that the patient’s voice is extremely powerful in motivating other patients to adopt positive health behaviors and become more engaged in their health.”

Rachel Sexton, Vice President of VPR POP, the company that manages the A1C Champion program, hears often from physicians after a program, “I’ve been telling my patient this for years, but it didn’t sink in until they heard it from another patient.”

Part of the magic peer-to-peer programs offer is what’s often missing in healthcare, empathy. Sanofi has already developed with VPR peer-mentor programs in two additional disease states – Gaucher and Multiple Myeloma.

Expanding opportunities for patients 

HealthDay just reported that one in ten visits to the doctor involves diabetes. The epidemic is growing. While patients should never, and will never, replace health professionals, we can offer something medical practitioners cannot.

Not bound by the restrictions of a mammoth health care system that providers and insurers labor under, we can be fleet of foot, more innovative and across the internet reach thousands like ourselves. One day millions. 

The influence of patients also benefits practitioners. By reading diabetes social media sites and books written by people with diabetes, practitioners can learn what patients think, feel, need and are concerned about, and – in our time-starved medical system – share these resources with their patients.

young leaders
International Diabetes Federation’s ‘Young Leaders in Diabetes’ conference, Melbourne 2013. 124 diabetes patient leaders from more than 60 countries. 

I believe what Sexton foresees – patients will be inserted into more programs and places including educating medical students, those at healthcare corporations and anyone with a vested interested in health.

We should be looking now at creating ever more opportunities where people with chronic illness can serve as educators and inspirers.

We should be more fully leveraging this powerful and critical “smart patient” movement to educate, cut costs, amplify resources and offer the sole province of patients – shared empathetic understanding.

For in the end, no one “gets it” like the one who has it.

For a list of more diabetes social media sites, blogs, books and more on the A1C champion program click here.

A message from diaTribe’s editor Kelly Close

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Kelly Close if you don’t know is a tireless diabetes advocate and on the front lines of diabetes information and its dissemination. A highly respected financial analyst, as well as someone who’s lived with type 1 diabetes for more than 25 years, Kelly runs Close Concerns and keeps an eagle eye on research, product development, pharma and the FDA.diaTribe is her free every other month e-newsletter. 

The July issue had a message from Kelly I wanted to pass along. Given the FDA’s risk-averse policy to new drugs and devices, many products that could help the many linger and languish. Kelly’s inviting any and all of us to chime in to the FDA at their public hearing August 11th. Here’s the article below and here’s the plea: please email us on what you would like the FDA to know at: 

We want our diabetes treatments to be effective, but we also want them to be safe, and it is up to the FDA to decide if the benefits of a given medication outweigh the risks. Our concern, is that the pendulum has swung too far in favor of caution and safety at the expense of innovation. Much-needed new products are being delayed or even shelved entirely. the good news is theta FDA will be considering these risk-benefit tradeoffs at a meeting in August, and you have a chance to make your voice heard.

Determining whether a new diabetes drug should be approved has never been easy, but the turning point in this debate occurred in 2007, when Avandia was implicated for apparently increasing the risk of heart attacks. The FDA revised its guidelines so that drug companies would need to demonstrate cardiovascular safety before approval, adding huge costs to the process ($100 – $300 million). The FDA tried to ease this burden by allowing the companies to submit so-called interim data, or data midway through the cardiovascular (CV) trial that demonstrated safety, and the companies could complete the trial after the d rug was approved.

Unfortunately, that hasn’t worked out too well. Once the drug has been approved, participants want that drug and are motivated to abandon the trial. It’s logical behavior, but it negates the very costly study.

The result? Companies are giving up on diabetes. Bristol-Myers Squibb left diabetes entirely in 2013, and Genentech is out too. The cardio trials can delay drugs (like degludec) and follow up drugs (IDegLira) for years. Takeda said it won’t develop its once-weekly DPP-4 inhibitor in the US because trials are too expensive, while delays with Sanofi’s GLP-1 agonist Lyxumia slowed development of entire new classes of diabetes drugs.

In sum, there are benefits to the trials, but we believe we are sacrificing innovation at the altar of safety. (And by the way, Avandia was ultimately found to be safe).

The FDA is holding a public hearing on August 11 to discuss how to address interim data in trials. This is a real opportunity for our community to make our voices heard. Registration to attend is open until July 28; those who can’t make it to Silver Spring, Maryland, can submit a comment right here at Kelly@diaTribe.org. Every comment submitted before July 28 will be considered, but you can submit all the way up to October 10. We would love to thank the FDA for giving patients and families and healthcare providers the option to comment. 

When our response is ready, we’ll tweet it and make it widely available – we’re working on it now! This issue is complex, and it’s only part of a much larger question about how we should handle drug development and approval. But for now, let’s tell the FDA that the status quo isn’t working. We also look so forward to following up November 3 in a conversation with FDA – read our new now next for more on this!

very best,

Kelly

Medicare’s cost-slashing for test strips creates a DOC movement: Strip Safely

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StripSafely is the Diabetes Online Community’s raised voice to protect ourselves from inaccurate blood glucose meters and test strips.

This month Medicare begins offering a limited variety of glucose meters to its beneficiaries. Many of the test strips offered, and manufactured overseas, fall below the FDA approved standard for accuracy. That standard is already too low but don’t get me started.

I’m asking you to join the movement. It’s easy. Write a letter (samples provided) asking the FDA to ensure strip accuracy. If you have diabetes, know someone who does or love someone who does, you know this is a life and death issue.

And while you may think this doesn’t concern you because Medicare is a lifetime away, this may drive US manufacturers of meters and strips out of business. That means: no quality control, innovation, support services, educational programs, and oh yea, accuracy.

It only took me 15 minutes to write my letter. Here are sample letters to make it easy. And here’s mine. As you can see, I took the sample “Short Letter” and just made it personal.

Jeffrey Shuren, MD JD
Director, Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Avenue, WO66-5442,
Silver Spring, MD 20993

July 2, 2013

Dear Dr. Shuren:

I’ve had type 1 diabetes for 41 years and I’m turning 60 next month. Two weeks ago my A1C was 5.5%, yes, normal. How is that possible? I adhere to a healthy diet, exercise every day, and check my blood sugar diligently using a meter and strips recognized among those with the tightest accuracy.

I am writing to you because while I might have said as a teenager, “I’d die if I don’t get that!” I actually could die if I don’t have accurate test strips.

Those of us living with diabetes truly need your help and advocacy. We are facing losing our health due to Medicare’s July 1st cost-slashing program. In only a few years I will be affected by this if nothing changes, and meanwhile US manufacturers may get squeezed out of the market due to price. That means we will lose further quality control and standards, innovation, new product development, service support and educational programs.

At a recent meeting with the Diabetes Technology Society, the FDA acknowledged that many blood test strips do not deliver the accuracy for which they were approved. Further, the FDA has no plan to fix this problem.

I need you to have one. My Aunt needs you to have one, my downstairs neighbor needs you to have one, and hundreds of my friends and acquaintances need you to have one. And my husband, who doesn’t have diabetes, desperately needs you to have one. Otherwise, one day he may not have me.

Blood sugar fluctuates all day, every day both as a consequence of what we do, and by its own nature. I don’t need the quality of test strips to also be uncertain.

Please, I am asking you to, at the least, implement a program of ongoing random sampling of strips to insure that all brands consistently deliver at least the minimal accuracy approved by the FDA.

While I have previously written that the FDA should tighten the ISO standard, how wonderful it would be if Fixing Diabetes Accuracy is one of the things for which the FDA becomes known.

Riva Greenberg

Don’t wait. This is something we can do together. And lives depend on it. Feel free to copy my letter, just fill in your own specifics.

Thank you

Featured guest on HuffPost Live: Rise of diabetes around the world

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Today I had the pleasure of attending a panel discussion about the rise of diabetes around the world – and what to do about it. 

Michael Moss, author of “Salt Sugar Fat,” about how food companies engineer our addiction to unhealthy food, was a fellow guest. 

And just today the news reported that diabetes-realated deaths in NYC hit an all time high! [I come in around 11:50 by the way ;-)]

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Spare a Rose, Save a Child, Share the love

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Several in the DOC (Diabetes Online Community) including Kerri Sparling, Kelly Close, Manny Hernandez, Bennet Dunlap, Adam Brown and Jeff Hitchcock have joined up with Johnson & Johnson to help raise funds forLife for a Child, the International Diabetes Federation’s humanitarian program that gets life-saving supplies, education and care to children in need in developing nations.

The initiative is called “Spare a Rose, Save a Child” and here’s how it works. Instead of buying a dozen roses this Valentine’s Day for your amour, buy 11 roses and take the savings from that one rose and contribute it to IDF. Kind of a win-win-win. Your loved one gets a beautiful bouquet of roses, a child gets help to live and you get the joy of giving twice.

The program is occurring all this week from February 10-16th. Just make your donation here. In the spirit of Valentine’s Day, spare a rose, save a child and share the extra love you’ll feel with the lucky one who already has your heart. 

Your old cell phone can buy life-saving, in time, care

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Chelsea Clinton wants your phone!

This is such a great cause. Chelsea Clinton and supermodel Christy Turlington Burns have started an action at George Washington University – that you can be part of – to collect old cell phones so women in Congo and Nepal can get critical care fast. 

Money from the sales of your recycled phone will be used to buy new phones and given to women in developing countries so they can get vital information from far-away health care providers and connect for critical hands-on care in life-saving time. It’s about taking an old cell phone and creating a health care infrastructure where none exists. 

Your donated phone will generate two to three new cell phones. Smartphones can yield five to 20 cell phones. 

To donate your phone, ipad, ipod, digital camera or other mobile devices,register here, fill out the ticket Information, click “Register” and you’ll be led to a registration page. Fill it out, click “Complete Registration” and you’ll be led to a page that says “Order Confirmation.” Click on “Hope Phones mailing label” and you’ll be provided a Prepaid Shipping label to affix on a padded envelope and drop in the mail. 

The postage is free, the padded envelope is on you. 

In these days of all bad news all the time, this is a great way to make a huge difference in the lives of others.

Ann Keeling, CEO of IDF, talks about the urgency of September’s UN Summit

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YouTube video

Yes, as you can see this UN Summit has caught my attention, my humanity and my advocacy. 

What greater opportunity do we have than this event scheduled for world leaders to come together and create targets and tangible actions and outcomes for reducing non-communicable disease by 25% by 2025? 

If you still don’t understand why it benefits all of us to reduce the global impact of non-communicable diseases, Ann Keeling gives an impassioned interview to Manny Hernandez.Watch it and you will.

September 19th’s UN Summit hits an upset

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I seem to keep saying, “If you read my last post…” but this is a story that keeps growing. The International Diabetes Federation (IDF), who are driving a campaign to get President Obama to the first-ever high-level UN Summit to contain and eradicate non-communicable diseases (NCDs), the top 4 of which are: cancer, heart disease, chronic respiratory and yes, disease – now cites a stand-off getting U.S. and European Union representatives to commit to outcomes and timelines. 

The IDF issued a press release early this morning that some UN member states are jeopardising international progress by trying to postpone and weaken United Nations negotiations.

The press release goes on to say, “Of particular concern are the actions of the U.S., Canada and the European Union to block proposals for the inclusion of an overarching goal: to cut preventable deaths from NCDs by 25% by 2025.

As Jacquelyn Beals, PhD writes at Medscape News in “UN Summit on Noncommunicable Diseases Hits Snag”negotiations over an outcomes document for discussion at the Summit have hit a wall, with the United States and the European Union opposing many of the target-oriented resolutions on the grounds that they would be responsible for the bulk of the action items. Because developed nations would foot much of the bill for combating NCDs, they are reluctant to commit to time-bound targets in an uncertain economy.

Brian Ward, policy advisor for the European Respiratory Society, says in the article, “Despite the fact that the NCD burden is highest in Europe and the United States, these regions have also been very reluctant to commit any financial support to this UN process aimed at tackling the NCD epidemic.”

President of IDF, Jean-Claude Mbanya, MD, PhD, who will address the delegates at the European Association for the Study of Diabetes Annual Meeting on September 13, says we have the evidence cost-effective solutions are available and with the Summit we have the political opportunity.  

With President Obama engulfed in the U.S.’s financial woes it’s easy to say let’s concentrate our attention and finances on jobs, yet something else he said early in his presidency is healthcare will bankrupt us if it, and we, don’t change.

Ann Keeling, CEO of IDF and chair of the NCD Allianceand CEO of IDF, which groups some 2,000 health organisations from around the world focused on non-communicable diseases says rich nations are reluctant to foot much of the bill for tackling a chronic disease epidemic in poorer nations, and are reluctant to commit to this when their economies are in turmoil. But such fears are short-sighted.

So which comes first? Put our money toward helping people around the world, and here, to achieve better health in order to halt health care costs from bankrupting us and halt non-communicable diseases from impeding global progress and devastating the world economy or ignore the state of the world’s health and pay later? 

 

Send a postcard urging President Obama to attend the UN Summit on diabetes next month

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If you haven’t heard, September 19-20 Heads of State around the world are meeting for the first-ever High Level Summit on non-communicable diseases. Diabetes is one of the four devastating illnesses putting our health – individually and as a nation – and our economy and future in peril.

On the Huffington Post this week I write about the International Diabetes Federation’s Postcard Campaign to get President Obama to the summit – and commit to improving resources and treatment for diabetes and halt the epidemic here and around the world. 

Please take a moment to send your postcard. You may end up changing all of our future.

Big Blue Test earns two Telly awards!

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Last year Manny Hernandez founder of Diabetes Hands Foundation, David Edelman founder of DiabetesDaily.com and me, along with venerable producer Sean Ross, created the Big Blue Test video which was awarded the 2011 silver (the highest honor) and bronze Telly awards – respectively in the online programs regarding social issues and health and wellness categories.

If you were one of the 133,674 views the video received, you know the video promoted the benefit of exercise to manage blood sugar. Specifically, taking the Big Blue Test – doing just 14 minutes of an activity and seeing your blood sugar come down. Thousands of people saw their blood sugar lowered on average 20 points. Each view of the video also made possible a donation of $75,000 from Roche to two diabetes charities that sent life-saving insulin and supplies to children in need around the world.

This year Manny, David, Sean and I are back in the saddle, as is Roche, to create another big blue test video. Look for it this November, diabetes month. 

By the way, you don’t have to wait till November to see the benefit of 14 minutes of activity. Why not do it today? Then come November, join the thousands who will record their 14 minutes of activity on the Big Blue Test site (which I’ll be sure to tell you about) and work toward saving your own life, and that of a child in need.