Coffee Date # 3: Lilly Diabetes Takes The Mic

Julie Herrick Williams, Communications Manager at Lilly Diabetes, joins VLNS as the third Coffee Dates guest.  When I requested diabetes industry/pharmaceutical entities to discuss insulin here, two people rose to the occasion- to my pleasant surprise.  Thank you to Mike Hoskins for encouraging this interview, and to Julie and Lilly Diabetes for your candid participation.  Without further ado, let’s pass the mic to Julie.

 

A:  Insulin access and affordability are currently hot topics in mainstream media coverage, as well as diabetes social media conversations. Manufacturing, research and development (R&D), and marketing in pharmaceuticals are all complex. Can you explain how these -or other- factors tie into the pricing of Lilly Diabetes’ insulin?

J:  Many factors go into the list price of Lilly insulin, and that’s true for all of our medicines. Developing and manufacturing insulin actually is very expensive and scientifically precise, so only a few companies invest in it. Billions of dollars in costs (from R&D to technology to capital) and expert scientific and technical know-how are required. Lilly has built state-of-the-art insulin manufacturing facilities around the globe—and, in 2013, we decided to invest another $1 billion to ensure our facilities efficiently meet increasing needs for insulin as the prevalence of diabetes grows. We’re committed to meeting patients’ needs with the highest standards for quality and safety—and to addressing affordability issues for people taking insulin.

 

A:  Insurance plans and pharmacy benefit managers (PBMs) also impact what the consumer pays for insulin. Lilly recently coordinated with Blink Health to make insulin more affordable and accessible for some people with diabetes. Please tell us how this program works and who may be eligible. 

J:  We’re working hard to address concerns about the cost of insulin. On January 1, 2017, Lilly introduced a new insulin discount program. In partnership with Express Scripts and using Blink Health platforms, we’re offering a discount of up to 40 percent off most Lilly insulins for people who pay full retail price at the pharmacy (those without insurance or in high-deductible health plans). For more details, see blinkhealth.com and the attached patient brochure.  Since this is a discount program, not insurance, people should check their insurance before making a purchase through Blink Health.

 

Source: Lilly Diabetes

 

A:  I inquired of a fellow healthcare advocate which question she would ask if given the opportunity to have you answer it here. Her reply: “My main question: ‘Why?’.” [To paraphrase: Putting aside the R&D or insurance influences for a moment, why raise the price on a product that keeps us alive by hundreds of percentages over time?]

J:  It’s important to note that the price people pay at the pharmacy is the result of many different factors, most notably their insurance benefit design. While list prices for insulin have gone up, Lilly’s average net realized price for Humalog (the amount we receive after rebates and fees are paid) has been flat since 2009. A big reason is that we pay rebates and fees to PBMs and health plans to keep our insulins available on formularies. Unfortunately, people with high-deductible insurance plans do not benefit from these rebates; instead, at the pharmacy, they’re forced to pay list price, or “sticker price.” We’re working with others across the healthcare system to ensure that insulin is affordable for all who need it; our discount program is just the first step.

 

A:  What about the healthcare advocates who will say that more can be done, that perhaps we should not need a discount program to begin with if insulin could be more reasonably priced from the get-go? Are there any ideas in the pipeline to make this more of a reality?

J:   While our offer of discounted insulins through the Blink Health platform was an important first step, we know that we must do more. We need a broad-based, long-term solution. Through conversations with stakeholders—from payers and employers to patients and advocates—we’re seeking a multi-pronged approach where we assess and improve health insurance design, out-of-pocket costs, rebate streams and transparency in drug pricing. We want to be part of the solution—to improve care, increase efficiencies, and lower costs.

 

A:  Previous Coffee Dates have discussed what the term ‘transparency’ embodies for those who rely on insulin to live. What does transparency mean from the Pharma perspective? What improvements can be made to ensure all sides of the healthcare equation are well-informed and able to access resources for optimal health?

 J:  Over our 140–year history, Lilly has strived to enhance the public trust of our company and industry by being forthright and ethical in the conduct of our business. For instance, we believe our process of openly reporting financial interactions with healthcare providers builds trust and confidence with those providers, as well as with patients and caregivers. Yet, we realize more can be done to respond to society’s fast-changing expectations, so we are constantly working to improve. (By the way, participating in this blog chat is just one way that we like to be transparent!).

 

A:  Will biologics and biosimilars help to drive down insulin costs in the future? What are the options if the element of consumer choice in treatment is affected by insurance coverage of certain products?

 J:  The launch of Basaglar in 2016 as the first follow-on insulin did, indeed, introduce additional competition into the basal insulin marketplace. Fortunately, that should reduce some healthcare costs. But most of those healthcare savings are realized on the net cost level to PBMs, health plans and others. What a person pays for insulin at the pharmacy is the result of many factors—most notably, their insurance benefit design.

While we are strong advocates for treatment choice, we recognize that healthcare providers and insurance plans ultimately select the treatment options for people. Consumers will need to talk to individual insurance companies or pharmacy benefit managers about their list of covered medicines.

 

A:  Does Lilly have charitable programs for those who need insulin outside of the U.S.? Where can readers go to learn more about these options?

 J:  Yes, we are deeply committed to the International Diabetes Federation’s ‘Life for a Child’ program in developing countries. The program provides insulin and syringes, blood glucose monitoring equipment, clinical care, HbA1c testing, diabetes education, and technical support for health professionals. Over the past decade, Lilly has donated more than 1 million vials of insulin through this program, helping thousands of children access the care they need. To learn more about ‘Life for a Child,’ email lifeforachild@idf.org or click here: http://www.idf.org/lifeforachild/contact. And, the Lilly Cares Foundation’s Patient Assistance Program provides medicines at no cost to qualifying U.S. patients. To learn more, please go to www.lillycares.com.

 

A:  Finally, inquiring minds want to know: What is Ryan Reed’s lucky coffee order on race day?

J:  It’s pretty simple: he likes regular coffee – black!

 

We Interrupt This Program…

For a special message:

 

Pharma and industry folks, we invite you to discuss your thoughts on insulin in an upcoming Coffee Dates interview.  Here is your chance to share your point of view.  If interested, please contact me.  

To read more Coffee Dates regarding insulin, please see here and here.

Insurance Sans Reassurance

Insurance isn’t all it’s cracked up to be.  We’ve been over this on Twitter.  Out-of-pocket expenses remain ludicrously high for many of us, and in my humble opinion insurance gets off the hook way too easily while the media yells at Pharma (which is, of course, its own beast of an issue- but that is an argument for capitalism that goes beyond the intent of this blog post).

It is open season for insurance enrollment, so you would think that the necessary information consumers need in order to select a plan that suits their needs would be front and center.  Far from it.

I am under the impression that no one is an “expert” in healthcare anymore.  Healthcare is too complex, and varies too much by individual situation, for anyone to truly grasp each nuance at a level of expertise.  I am certainly not an expert.  But I do have lots of healthcare experience at a young age, having worked in healthcare for many years, lived it as a diabetes advocate, and earned a Master’s degree in healthcare administration while graduating at the top of my program.

Despite all of the above, healthcare remains a Rubik’s cube of complexity, and I have grave concerns with where we are heading from here.  How on earth can we expect someone who doesn’t live and breathe healthcare as a total nerd to ever figure this stuff out?  We don’t.  And that is how insurance banks on us.

Ever since news broke of CVS Health’s  ridiculous 2017 formulary removals, which included Sanofi’s Lantus, I have scoured the internet for more information.  Would my current insurance provider (which consults with CVS Caremark as a mail order pharmacy supplier) be offering any coverage for my trusted Lantus?

Insulin, too, is its own monster in the healthcare market.  While we need more affordable, accessible options for diabetic folks all over the globe, this has created a pharmaceutical conundrum.  Pharma companies have answered the call with biosimilar development promised to be more reasonably priced than the name brand options.  The Affordable Care Act encourages cost containment, so we cannot be surprised when companies make moves to curtail costs.  My main concern with both the ACA and pharmaceutical development, though, is that consumers must still have an element of choice if we expect them to achieve positive outcomes (and, therefore, to control costs in the long-term).

Despite however biosimilars are marketed, we do not know for sure that they are bio-exact.  I have worked too hard to relearn the insulin wheel since ditching my defective insulin pump to return to multiple daily injections, and I am not interested in being a biosimilar guinea pig right now.  Why mess with the good thing that has been a lower A1c and better quality of life on Lantus?

Bottom line: If I am going to stick with my current insurance plan and provider in 2017, I absolutely need to see in writing if the insulin that keeps me alive each day is covered.  A 45-minute call with a Caremark representative this week had us both scratching our heads and simultaneously sleuthing around on the internet and insurance website, desperately trying to find formulary documentation for 2017.  Google yielded last year’s list, and searching “formulary” or “Lantus” on the insurer website came up with no matches.

Finally, the Caremark rep found the formulary list buried under a certain tab on the insurance website.  My hunch is that insurance companies do not actually want us looking up this information for fear that we may hop over to a competitor offering better coverage of our medications.  The good news for me is that Lantus will be covered for me next year, albeit at a higher price.  When all is said and done, the biosimilar version (Lilly’s Basaglar) is not that much cheaper…

What a convoluted runaround for not that much gain, which is the moral of the insurance story in recent years.

 

 

*If you use FEP Blue, I highly suggest clicking here, here, and, especially, here to learn about 2017 coverage.

 

 

WEGO Health’s 2016 Health Activist Awards

If you feel so inclined, I would greatly appreciate your endorsements for my nominations to WEGO Health’s 2016 Health Activist Awards.  In my opinion, we are all health activists by virtue of being engaged in our own healthcare stories, as well as being supportive members of online (and even offline!) communities.  Your interactions over the past 2 years have been invaluable to my healthcare journey, and I hope that I have offered that same level of support in return.

To endorse me, please see the link here.

Many thanks to WEGO Health for all that they do to make healthcare better!

 

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Image credit: WEGO Health

“Survey Says…?!”

***Update: The survey is now closed. 

Thank you so much to everyone who participated and/or helped to spread the word!

Diabetes folks, please consider participating in my research survey, which can be found here:

Very Light, No Sugar Survey 2016

 

Please read the bold text of the cover page, as it is very important to our data collection.

Sharing is appreciated. Thank you!

 

 

Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

UHC/MDT Debacle Through the Lens of a Bruised Insulin Injector

If I were to fit the stereotype of a self-absorbed Millennial, I shouldn’t give an albino squirrel’s @$$ that UnitedHealthcare will solely cover Medtronic insulin pumps in the near future.

^ Albino squirrel spotted in Washington, DC.  He told me that a laboratory cured him of diabetes!

 

Well, albino squirrels are real, and so is this Millennial.

I do care.

My insurance provider is not UnitedHealthcare.  I walked away from my Medtronic insulin pump over a year ago.  Currently, I manage my type 1 diabetes using Lantus and Humalog insulin pens, the traditionalist method of being certain that insulin is getting into my body.  My stomach bears the bruises to prove it.

Disappointment still lingers when I think about the divorce from my Medtronic insulin pump.  I identified an infusion set defect, and spiked high ketones with every site change.  I pleaded with Medtronic to help, to find an alternative solution, to listen and to trust me.  For awhile, they did.  But then the problems kept happening, and I kept emailing, and they finally chose to stop responding.

They walked away.  If only I could abandon my type 1 diabetes so easily…

I have been vocal about my insulin pump tribulations, but I have always given Medtronic the benefit of the doubt at the end of the day.  My situation was a rarity; most people have good hearts; the manager who did not respond to my emails was told to do so by higher-ups who feared a lawsuit; she went home at night and felt a twinge of guilt, wondering if I was still sick with ketones from my failed pump sites.

At least that’s how I try to imagine it.

When I first saw the headlines about UHC and MDT teaming up, I was frustrated but not surprised.  Finally, people were seeing the light.  Rather, the darkness.

Our healthcare system involves give and take, tug-of-war with patients’ quality of life and companies’ profits at stake.  Although the Affordable Care Act gave us coverage for pre-existing conditions, the ability to stay on our parents’ plans until age 26, and supposedly lower costs, the reality is that in order to receive, we also have to give.  To cut costs in one place, costs have to shift somewhere else.

Medtronic and UnitedHealthcare are not the only companies out there striving to make a profit in a newly-designed medical playing field.  Perhaps their business arrangement was intelligent for their own financial reasons.  Public relations-wise, not so much.  Only time will tell the true breadth of this so-called deal.

As we over-emphasize cost-cutting, we must be careful not to also snip choice and patient autonomy.  Reducing costs sounds great in the short-term, but we cannot disregard the long-term.  If patients’ health is compromised by inadequate access to resources, all the costs that insurance companies may have saved upfront will later be seen in hospital bills and subsequent treatment.

Under my current insurance plan, a preferred provider organization (PPO), I can go out-of-network if I so choose and if I have the capability to pay more for that care.  There are times where I believe wholeheartedly that an out-of-network provider is the absolute best shot at achieving better health.  That is my prerogative, and, understandably, my financial situation to figure out.  While the pricing may not be pleasant, what is most important to me is that I am able to access that care.  If high-quality care means sacrificing my own money for a vacation or a fancy new car, that is my choice.  If my financial situation changes later on, perhaps I will have to reassess and fall back to an in-network provider.  Yet such ability to choose should never be limited by the government or by insurance providers.

Collusion of insulin pump coverage is concerning not only for the diabetes community, but for healthcare at large.  Imagine the ramifications of collusion in multiple disease categories, of various insurers, corporations, and pharmaceutical companies.  Sure, big business is big business, but ethics should be ethics, too.

Notably, in “socialized healthcare” situations all over the globe, we must concede how much give-and-take is occurring.  Patients may have to wait months to be seen by a provider, and that provider may be mediocre.  Such is the sacrifice for limiting the free market.  On the flip side, we have gargantuan healthcare costs here in the U.S. because we roll the dice on access and affordability of treatment in the name of corporate greed.  If the grass is apparently always greener, well, it looks pretty yellow from my point of view, no matter how or where you slice healthcare financing.

Next weekend I will walk at my Commencement ceremony, having completed my Master of Science in Healthcare Administration and Management degree in December of 2015.  The UHC/MDT situation reminds me of a moment in our Public Health course.  As our Professor detailed how “money talks” in medicine, a longtime nurse in the class shook her head, visibly horrified.

“Is that really how this all works?  People don’t simply want to help others who are hurting?” she asked, bewildered.

She was like the little kid learning that Santa is not real, her innocence suddenly dissipating before our eyes.

The reality of healthcare is that money does talk.  Yet, like my classmate, we have to keep the hope alive in our hearts that some of us good eggs are in it for the long haul, for improving lives and fostering genuine human connection in the process.  Medtronic and UHC have called such goodhearted concepts into question, which is why we are now experiencing #AllOfTheFeelings.

Circling back to my personal, weird insulin pump scenario: The things that kept me afloat during such dire straits were my compassionate healthcare team, and the ability to choose.  When my Medtronic pump was no longer a good fit for me, some semblance of hope remained.  I could always sidestep over to a different insulin pump brand, for example.  Or, I could return to multiple daily injections, which I ultimately decided to do.  My doctors and nurses listened to me; they trusted my judgment as an informed, engaged patient; and they lifted me up on the days when it all seemed too heavy a cross to carry on my own.

Not one second of that ordeal was easy.  But we did it, somehow.

My advice to those overwhelmed by anxiety about access to health technology in light of the UHC/MDT deal is that you will survive somehow, too.  It may not be enjoyable.  It royally sucks that such a violation of your trust as a consumer has occurred, and that your freedom of choice has been stripped away.  It is morally reprehensible that this is happening under the guise of expanding innovation; limitation of choice, in fact, stifles creativity at all levels.  You have a right to be angry as hell.  Lean on each other liberally.  Remember that there are people overseas, or even in our own backyards, who do not have access to insulin.  Our voices must lift them up, too.

Hard times boil down to the good eggs and the bad, the people who answer emails filled with desperation and suffering, the companies which accept responsibility and troubleshoot the issues, the patients who never stop advocating no matter how sick they feel, and the medical teams which have their backs.

Healthcare is a complicated equation.  But we are on the right side.

We are the people who care.

Medtronic and UnitedHealthcare, do you care enough to join us?