Sanofi’s Partners in Patient Health diabetes advocacy summit held last week in Washington, DC, offered some good learnings, but in terms of taking action, was more of a question-fest than a place to get any answers, IMHO.
That is, we spent a lot of time talking about the need for coordination among various groups, and asking a lot of “How can we…” questions – which seems a bit frustrating, given that many of us have been asking these same questions for at least five years now.
This event, the fourth annual of its kind, brought together quite an impressive mix of about 70 “stakeholders” -- key executives from ADA, JDRF, AADE, FDA, the Endocrine Society, the American College of Physicians, the National Business Coalition on Health, Caregiver Action Network, the National Kidney Foundation and more – alongside a bunch of Sanofi folks and a virtual “who’s who” of the grassroots diabetes advocacy world.
I was pleased to attend alongside Manny Hernandez and Melissa Lee of the Diabetes Hands Foundation, Kelly Close and Adam Brown of diaTribe, Brandy Barnes of DiabetesSisters, Kerri Sparling of SixUntilMe, Christel Aprigliano of the Diabetes Collective, Christina Roth of College Diabetes Network, and Bill Polonsky of the Diabetes Behavioral Institute, among others.
The morning began with a pair of talks about the importance of advocacy, and how we might best go about influencing insurance exchange coverage of diabetes, if we could create a coordinated effort. The to-do list, according to John Schall of the Carvegiver Action Network:
- build your case step by step
- suspect problems that need to be addressed and investigate them
- collect patient stores and evidence
- use partners and coalitions
- know when to “hit” - feds, payers, state government, etc.
All great tips, but everyone in the room agreed that no action can be taken until we can all unify under shared messaging and shared goals. Several of the professional groups present insisted that they are already making great strides in bringing stakeholders together for coalitions, but when asked whether patients were represented amongst those stakeholders, radio silence ensued.
I think all of us DOC (diabetes online community) advocates sensed frustration among the established orgs that our efforts seem “fragmented and shrill” (words of one presenter), and that a more organized and unified Patient Voice is needed.
Perhaps, but to get there what we need from those orgs or supporting Pharma companies is help with resources to enable more passionate patients to devote more of their personal time to advocacy, and allow all of us to build on efforts that are already working well in the patient community (more on that below).
Next came a stand-out presentation by James Hill of Pharma Strategy Group on “The Fundamentals of Payer Dynamics” -- one of the clearest explanations I’ve heard of how the big health insurance orgs make decisions about what’s covered in their plan.
Basically, drugs and treatments are placed on their all-important “formulary” list through a complex process of committee reviews, none of which involve patients.
A Pharmacy and Therapeutics Committee -- made up of doctors, nurses and other HCPs -- looks at safety, efficacy, and net cost of the item in question. And a Therapeutics Assessment Committee, comprised of pharmacists, does a clinical review also evaluating safety, efficacy, and the level of exclusivity of a drug, i.e. whether something else on the market meets the same need. They also consider “exclusivity” – in this case meaning how many products are needed in one class to meet all patient needs
When making changes to the formulary, they also consider “member disruption” – health plan-speak for the notion that when adding something new, they must remove a product or move one to another tier of coverage, which will “disrupt” some patients. Oh yeah, like the way many of us suddenly find the insulin we use is no longer covered! To which D-advocate Melissa Lee (soon to take over the helm of DHF), brilliantly quipped:
“Switching my insulin to an ‘equivalent one’ is like saying we’re switching out your wife for another blonde, blue-eyed woman. Surely you’re just happy you still have a wife!”
According to Hill, there’s a record number of exclusions going on right now as payers tighten their belts: ExpressScripts has excluded 66 products of late, and CVS/Caremarket nearly 100 products, impacting 24 million customers. Wow!
Interestingly, he says, “You don’t have to fail on a product to get switched to another brand, you just have to try it” – meaning patients will often be forced to try a generic brand first. Then they can go back and request the branded version if they wish. What? If that’s not failure I don’t know what is… not to mention the massive waste involved in pushing drugs on patients that they don’t want and won’t use.
The Writing on the Wall
The mid-day interactive session was the heart of this event. Three rooms were set up with big Post-It posters on the wall, and sharpies and stickers laid out so attendees could openly brainstorm on the various challenges and opportunities for advocacy.
While I enjoyed the format and the side conversations, it felt like we were just spending a lot of time writing down the obvious: diabetes is a complex problem; the general public is woefully uniformed about it; lots of patients don’t have the education or access to care they need; diversity creates further challenges; there is a rift between type 1 and type 2, etc., etc. (see images).
At one point during the discussions of all these barriers, the brilliant Kelly Close said, about the care organizations her firm observes: “I’ve never seen so much anxiety about getting the basics done. There’s so much that’s overwhelming.”
She asked the Sanofi session leaders a pointed question: What is the aggregate level of funding for advocacy groups now compared to 5 years ago? No answer was readily available, but her point was well-taken: follow the money.
A National Type 2 Registry
The one big exciting action item we heard about is the development of a new national diabetes data registry being developed by an initial coalition of the American College of Cardiology, the American College of Physicians, Joslin Diabetes Center, and ADA. As you all know, there’s a sore lack of data on patients around the country and their state of care, so similar to what T1D Exchange is doing for the type 1 population, this could be a powerful treasure trove of information.
However, ADA’s Chief Medical Officer Dr. Rob Ratner (present at this event) emphasized that the new registry is not exclusive to type 2, “but rather it will take all-comers, including GDM, LADA, MODY and type 1.”
Unfortunately individual patients can’t just go in and register, because the data is being automatically downloaded from electronic medical records from clinics. Beta testing sites are being started now
And what will be done with the data? Ratner says: “Aggregate de-identified local practice data will be returned to the medical practices or organizations on a regular basis along with the national data for comparison. The national aggregate data will be available for researchers to analyze. A Research and Publications Committee has been established for the Registry which will review and prioritize such research proposals.”
btw, I met and spoke at length with the ADA’s interim CEO Suzanne Berry, a very pleasant lady with a strong background in disease-based nonprofit leadership, but still learning about the diabetes world. She told a quick story about how surprised she was that a type 1 colleague, after eating one of those fruit, yogurt and granola parfaits, was struggling to get her blood sugar down for the rest of the day. Why yes, welcome to type 1 diabetes! And Auf Wiedersehen to parfaits…
A Unified Voice?
Phrases like coordination, work in unison for a bigger impact, and aligning incentives dominated the day – especially salient during the afternoon panel comprised of advocacy leaders from other disease states.
The three very impressive women who spoke were Erika Sward of the American Lung Association, Cynthia Bens of the Alliance for Aging Research (that does a lot of work on Alzheimer’s) and co-founder of the National Meningitis Association Lynn Bozof (whose college-age son died a gruesome and painful death – hearts out to you, Lynn).
The takeaway from their panel was clear: if we want to have national impact, we in the diabetes advocacy space need to get our act together. Literally.
We need to “move past the egos and overlap and competition for funds” to unite behind unified messaging, and ideally focus on ONE GOAL (or at least one at a time).
“Can you all get on board with a letter to CDC on the importance of funding research, for example? Could it be co-signed by all the groups in this room?” asked Erika Sward of the Lung Association, who’s clearly had an uphill battle in her own space.
“You need to find a common space that’s uniting. And who will be the leader? Who will organize this?” she prompted. She also suggested establishing Working Groups to tackle priority topics.
My first thought was that Sanofi should fund a new umbrella organization, and hire Manny Hernandez (who’s stepping down soon as head of the Diabetes Hands Foundation) to run it. What up, Sanofi?
In any case, Cynthia Bens of the Alliance for Aging Research reminded us all how much “the message matters, words matter” and that personal stories are extraordinarily powerful, so we should work to find a way to better capture and communicate those to regulators and legislators.
Lynn Bozof emphasized the importance of media and message training for advocates. “You might do a 10-minute media interview but they only use a 30-second soundbite,” she said, adding that “repetition = retention” so it’s important to keep hammering on your core message.
Defining “Patient Access”
The official title of this event was “Supporting Patient Access to Diabetes Care” and given that, some questioned whether Sanofi may have a more product-focused view of advocacy than we all do – especially after the closing remarks by the company’s head of diabetes, Andrew Purcell.
Don’t get me wrong – there was absolutely zero product-specific marketing talk at this event, but when it came down to the concrete question of what the company can do to help advocates, the buck seemed to get passed elsewhere while the talk circled back to how patients need to be more vocal about demanding access to the best products.
At least we could all agree that we should push payers and regulators to make patient representation on all their decision-making panels and committees mandatory. They should also be required to have a meaningful and transparent method of capturing that patient input and giving it serious consideration, so they can’t get away with just appointing some “token patients.”
If we really want to shake up the world of diabetes advocacy, it all boils down to three core questions, in my eyes:
- As one presenter noted: “There are a ton of patient voices, stories, and data – how do we package that for maximal impact?”
- How can we recruit more active patient advocates and get them properly trained? (not to mention providing scholarships and other funds to enable their work)
- Can we, as a diverse community including ADA, JDRF, AADE, etc. and a bunch of smaller disparate groups, really coordinate?
One obvious answer to No. 2 that I see is the MasterLab program kicked off by the Diabetes Hands Foundation last year. This could become a seminal training ground for a new army of savvy advocates. (Hey Sanofi, how about pointing some dollars that way?)
Otherwise, the question-fest continues: will things really look different by the time next year’s Sanofi summit rolls around?