In the front lobby of Lilly’s corporate headquarters in Indianapolis stands a towering 12-foot tall statue of a mother holding her child in her arms, sick and starving to death due to lack of insulin.

It’s an artistic rendering of a real-life mother who took her son to insulin's birthplace in Toronto once upon a time, before the medication's discovery in 1921, when a diabetes diagnosis was a death sentence. As the Lilly folks describe it today, the statute is a visible reminder of what they are all about – changing the field of science and getting people the medication they need to stay healthy, even stay alive.

Unfortunately, the reality in 2017 is an incredible crisis in insulin affordability and access for many with diabetes, to the extent that people in our D-Community are losing everything because of lack of insulin, and facing life-and-death situations in some cases.

All of this was the big, sobering, anger-inducing backdrop of a recent Lilly-hosted “insulin access workshop” on April 20, where the Pharma giant brought in a dozen diabetes advocates to discuss action plans to start addressing this growing crisis.

This gathering came just before Lilly’s first quarter earnings call on April 24, when the company reported that just for its 20-year-old Humalog insulin alone, sales revenue in the U.S. went up 24% in the first months of this year, which generated all kinds of “positive momentum” on the company's revenue. Just seeing those figures made many clinch our fists in rage, and it's tough to stomach -- particularly as this issue is hitting some so hard, as shown in a NBC Nightly News segment aired earlier this week and the sad story of Shane Patrick Boyle's death recently.

No one is happy with the current state of affairs, even those in the top brass at Lilly Diabetes. It was clear that the people present at this meeting care, deeply. Just like many of us, they have personal D-connections -- one on the marketing team who just marked her 20th dia-versary with T1D,  another on the advocacy and payer side with a husband with type 1, and several others who shared stories recognizing need and hardship in the D-community.

“It is a crime, I agree with you on this, and we are not OK with the status quo,” said Lilly’s Jordyn Wells, an associate manager who works on the payer and corporate marketing team. “There are going to be a number of solutions that exist in this space – some may come from Pharma, or from others in the industry, some will be organizations, and from the Diabetes Community. Only by partnering are we going to get to the other side.”

There were roughly two dozen people in the room – 12 patients from the Diabetes Online Community, and the rest representing Lilly Diabetes (@LillyDiabetes). The DOC advocates present, including myself, were:

Attending on behalf of the 'Mine, my role was simple: Observe and report, to help inform those who couldn’t be there in person, and to assure that everything I might contribute to the conversation came from my personal POV as a longtime type 1. The group was mainly using Twitter hashtags #InsulinPrices and #InsulinAccess.

(Disclosure: I declined Lilly’s offer to fly me from Detroit to Indy, instead choosing to drive my own car and pay for my own gas, meals and parking. Lilly did pay for two nights at the Le Meridien Hotel in downtown Indy, as well as some hors d’oevres, snacks, and beverages. As always, Lilly was clear there was no pressure or expectation for us to write anything in their interest; everything reported here is my own observation and thought based on my personal experience.)

In a nutshell, what I saw gave me hope that we have the ability to influence this insulin access and drug pricing crisis instead of waiting on Congress or other leaders to weigh in. The blame game can take us round and round, but while that’s happening the advocacy plans being put into motion are potential game-changers, IMHO – even if they aren’t perfect or end-all-be-all fixes on their own.

It was a full daylong agenda. Here’s a recap of my takeaways from the Lilly workshop, for whatever it’s worth:

 

Building Momentum and Connecting Dots

To be clear, this Lilly workshop was a follow-up to efforts that have been underway over the past year, in particular a larger insulin pricing round-table in November 2016 coordinated by the National Diabetes Volunteer Leadership Council (NDVLC). Read our recap of that round-table here.

Certainly, not every player involved in this issue could or would be present at these meetings, including the much-decried Pharmacy Benefit Managers (PBMs) who have so much influence but remain aloof. And by no means did anyone present believe that this single meeting would solve the world’s problems or fix this issue once and for all. There are no silver bullets here, Folks.

Over the past several months, both Lilly and NDVLC have been among those in the D-advocacy community talking with payers and working to better understand the market dynamics of how the pricing scheme all fits together. Specifically, what can be done from an economic and business model standpoint to influence tangible change?

George Huntley, a longtime type 1 himself who serves as treasurer of the non-profit NDVLC, spoke at the Lilly workshop about what the group has learned so far. As many of these discussions go, the theme was “it’s complicated” -- as demonstrated by the maze of players who all have a hand in setting drug prices.

“This hasn’t happened overnight, it’s been a slow evolution of plan design over the course of the past 15 years,” he said. “Now, it’s reached a tipping point where it’s outrageous – no, we are passed that tipping point. But now, it’s incumbent upon us to express that outrage. Yelling about it is a great start, but there is a difference between being an educated consumer and just a consumer on fire.”

So, what can we do?

 

'Need to Do Better'

On Lilly's behalf, Jordyn Wells explained that most of what Lilly has been able to introduce into the marketplace recently are basically "band-aids" that clearly are “not ideal,” but are a starting point. Those include better promoting the Patient Assistance Programs (PAPs) that can help certain eligible people in need, to the BlinkHealth partnership offering limited discounts of up to 40% at CVS Health pharmacies to those eligible uninsured or under-insured PWDs.

Very true, and while some in the room were vocal about how inadequate these programs are for many in the D-Community, there was a recognition that they're just pieces of a much larger puzzle. Wells said these programs are short-term solutions that fit into larger systematic efforts to help those in need.

 

Taking it to Employers

There were a lot of stats and slides presented at this workshop, but the bottom line was: insurance isn’t helping patients the way that it should. One slide showed that in 2016, 57% of people with diabetes who use insulin were exposed to unexpected, high or full costs at the pharmacy at some point during the year. Another set of market research stats showed 51% of people in the U.S. are on commercial, employer-provided plans (including those that are self-funded by employers).

Then consider the telling figure that PBMs are responsible for 75%-80% of insured lives in this country – as PBMs create many of the employer health plans offered to employees each year. As non-medical switching becomes more common (go on Lantus instead of Levemir, because they’re "essentially the same"), this need to change the conversation at the PBM level is ever more important.

And who has the most sway over PBMs? Yep, employers do – because they are the clients who have a choice in which PBM they ultimately hire for the job. If employees aren’t happy and communicate that, and employers listen and take that message to the PBMs, the hope is that we can start effectuating change.

 

Lilly buildingLilly’s Ideas

Here are the ideas Lilly presented for employer-focused reform:

  • Manufacturers must take more responsibility in pushing for point-of-sale benefits from rebates. More work needs to be done to pass along these insider "rebates" to consumers/patients.
  • Free Insulin to clinics: An idea that Lilly mentioned as still being in development, and not finalized by any means, is an effort to work with non-profit groups over the next year to get insulin into free health clinics in select places nationally. Interestingly, not all free clinics are equipped to handle donations for free insulin, and so this is all in the works. Hopefully we all hear more soon.
  • First dollar obligations before deductibles. Employers can contribute to health savings or reimbursement accounts on Jan. 1, rather than gradually paying into those accounts throughout the year. This could help employees pay for insulin from the first day of the year. Again, not addressing the true pricing problem, but it’s something that could help.
  • Exempt insulin from deductibles: This is something Lilly’s already been doing as a large employer, but it wants to encourage more employers to adopt: insulin could/should be categorized as one of the essential, life-or-death meds that isn’t subject to a high-deductible, but rather just a flat co-pay. Wells said the high-deductible plan system was setup to drive people to cheaper generics, and to go to primary care doctors instead of higher-cost ERs. “But with insulin, it doesn’t make sense. Insulin should be treated differently.”

“(This is) something we can do tomorrow -- go to employers to start playing the puppet-strings and advocating PBMs for this change," Wells said.

 

NDVLC Campaign

The NDVLC also presented its related campaign that will be rolling out over the course of the next month or so.

Based on the NDVLC research, the cost for an employer to tweak benefit plan designs via PBMs equates to an average 22 cents per person per plan.

“If they were smart politically, they’d do this immediately,” Huntley said. "This would help quiet the firestorm over PBMs.”

Asked about unintended downstream consequences, he said there are hardly any relating to financial impacts on PBMs. They make $12 Billion (!) a year, whereas a PWD who pays $1,400 a month for insulin is facing serious, life-changing health consequences. 

“Our system has evolved to a point where now, employers are hurting their people,” Huntley said. “They are the ones in the free market who can do this, and they don’t know they can do this. Employers are assuming they are helping their people and that the system’s built correctly, but it’s not. So as consumers and employees, we must raise our voices to make them stand up to PBMs about benefit plan design. Because the human cost is not acceptable.”

 

DPAC’s Advocacy Tools

Affordable Insulin Project: Another exciting development was hearing DPAC co-founder Christel Aprigliano describe one of the many projects they've been working on since November – creating an online portal for our D-Community to get more involved in advocacy on this, appropriately named the Affordable Insulin Project. This is being rolled out in the next weeks, we're told, and is aimed at providing resources/tools/awareness on how the system all works, ways PWDs can easily approach and take this message to their employers, and what other policy advocacy tools might exist for insurance reform on the state and Congressional levels.

Advocacy App: While it wasn’t specifically connected to this workshop, just days before the Lilly forum DPAC launched a new mobile app designed to help people reach out via social media, phone or snail mail to their Congressional leaders in DC.

All of these tools feed into the fight for better healthcare reform and affordable insulin on a national level, legislative calls for pricing transparency and lower drug prices, suing Big Insulin and PBMs in court to put more pressure on them for disclosure and transparency, and creating a needed media blitz to keep this whole issue on the general public’s radar.

 

Health Literacy, Consumerism and Stigma

Of course, there's the reality that employer-focused advocacy isn’t foolproof, as this recent Bloomberg story shows. There are legitimate questions about stigma and workplace discrimination, and whether PWDs are comfortable with even sharing with coworkers or HR folk that they have diabetes, let alone advocating for company-wide insurance changes for their own benefit. And there's the issue of simply not being informed enough about the insurance coverage system, benefits design and legal rights.

On these challenges, the diaTribe Foundation presented a new six-part series that it’s about to launch at the end of May and run through year’s end to help tackle stigma and health literacy issues. The topics they have in mind at this point are:

One idea born from the brainstorm discussion was the possibility of Lilly helping to pay for materials that could be printed and displayed not only in doctor's offices and in multiple languages, but also in free clinics/ churches/ community centers, or even kiosks that could be set up to view and print materials for people who might not have Internet access at home.

Everyone in the D-Community is invited to be a part of what diaTribe is developing here and submit their ideas. Those interested can contact: amelia.dmowska@diatribe.org.

Overall, the day’s agenda was packaged as a “top-down, bottom-up approach” that encouraged tactics we can start implementing immediately -- even with the understanding that the affordability and access crisis is huge, so we have to be patient with incremental change. There were also many other aspects touched on, but this report summarizes the main points from my POV.

 

Balancing the Blame and PR

Clearly, Lilly is funding some of this – from a grant to DPAC to help develop the mobile community advocacy app to supporting the diaTribe series described above.

Sure, they do share some of the blame in creating the problem, but it's become increasingly clear to us over the past two years just how complex the system is, and that pointing the finger solely at the Big Insulin makers is neither accurate nor productive.

None of the major players are wearing a white hat here when it comes to how this all operates, and Big Insulin certainly should not be portrayed as innocent victims.

Yet the truth is that Lilly and other companies do good in this world, alongside some bad. They train nurses in schools to manage diabetes and treat dangerous hypos; they donate lots of insulin globally to developing counties; and they help send kids to D-camps, college, and conferences while also raising national awareness about diabetes through marketing, PR and celebrity spokes-folks campaigns. Not to mention, they support non-profits and various D-advocacy resources and even startups such as Beta Bionics creating the iLET closed loop system.

For all of those activities, we say Thank You. And it behooves us as patients to work alongside them to try to find positive solutions. They should be providing funds for all this! They make plenty of profit here, so let's let them foot the bill for much of the work that needs to be done.

It was also good to hear Lilly invite -- no, urge -- everyone in the D-Community to keep reminding them where gaps exist and what they can do better, especially when it comes to middle class affordability, the uninsured, and those facing poverty and cultural barriers.

It’s easy to be mad. And we all are.

But it’s not always easy to think critically and have a rational, intelligent conversation about upsetting topics, and then find some constructive action to take. I'm personally proud of our Diabetes Community for keeping our wits about us and pushing ahead, even in the most heart-breaking moments, like when we lose some of our kin because they don't have access to affordable insulin.

We must all work together to change this, to reach a day when none of us are forced to carry the weight of tragedy due to the inaccessibility of life-sustaining insulin.

 

Other DOC perspectives on this Lilly workshop:

Just Talking Podcast, featuring Cherise Shockley and her POV on the recent discussion. (& Part II)

Let's Work For Better, by D-Mom Meri Schuhmacher-Jackson at Our Diabetic Life.

The Cost, by longtime type 1 Rick Phillips, at RA Diabetes.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.