What would you be doing right now /
if you were not already doing something else /
to survive the costs of healthcare?
What would you be doing right now /
if you were not already doing something else /
to survive the costs of healthcare?
Very Light, No Sugar celebrates its fourth blogoversary today. I am typing this while sipping on a blueberry coffee with cream, of course. Some things never change…
Healthcare is keen on data, and I am humbled to note that VLNS has been read in 104 countries and counting since my first post in 2014. We surpassed the 100 countries mark this year, a feat that I never could have predicted those 4 years ago when I was sick on the couch with a defective insulin pump, simply setting out to blog in search of answers, advocacy, and support.
While my personal healthcare and advocacy journey has been marked with the typical waxing and waning, highs and lows analogous to life with type 1 diabetes, overall I am happy that this space exists. Where we go in the future is to be determined, but VLNS will forever be a part of my heart. And I am grateful for those of you who have loaned VLNS some space in your hearts as well.
I have admittedly been quieter on social media lately, and particularly, on this website. Perhaps my semi-silence is my own subconscious form of protest, the loudest way to express that I will never be okay with the clanging tambourine of the status quo in diabetes land. The older I get, the clearer it is to me that we have our work cut out for us. Perhaps I am the rogue #doc voice still figuring it all out, and I would be remiss to pretend to be anything else as a blogger.
Simply being alive, ~27.5 years after a T1D diagnosis, with health insurance and access to insulin, puts me in a very different position than most of the people living with diabetes worldwide. I pledge to continue to advocate for all of us. Sometimes that means taking a step back in order to stand up, to challenge the way things are and to remember the human faces behind why we need drastic change. Sometimes that means recognizing that my own voice doesn’t have to be the loudest in this moment; in fact, it is easier to hear the community vibe when I turn my own volume down and listen.
There are pillars of truth that have not changed in my 4 years here:
We need a cure.
We need inclusive community that is not scared of entertaining various viewpoints, that can agree to disagree, that lifts up rather than puts down. We need each other.
We need megaphones, and at times, we may need space.
We need a free, unbiased press and a healthcare industry that values humanity above all else; we need healthcare players who recognize that sometimes the will of The Whole may differ from the corporate office views.
We need affordable, accessible insulin.
We need blogs and tweets and advocacy actions. Look around. It’s working. I’m proud to call many of you my friends and fellow advocates.
Thank you for allowing Very Light, No Sugar to be part of the #doc fabric for the past 4 years. The diabetes landscape may change, for better or for worse, but our roots will always be strong.
THIS IS NOT A BILL!!!
This is simply the preface to the bill
so that you can be prematurely pissed off
about who will be taking away your money
The EOB outlines the costs
What you owe the doctor
What your insurer owes… someone
What debt your existence owes
to a society that doesn’t really care
That Advil pill at the office even though
there’s Advil in a Ziploc in your purse?
Ten dollars. The cup you pee in?
Five ninety-five per ounce
Don’t spill it when you close the window.
Does a smile at the reception desk
bankrupt the operation? Imagine a world where
insurance cards do not dictate our worth-
where compassion is doled out, unmeasured
and it’s okay to come back for seconds.
Can we quantify the waiting room tears?
The traffic, the tropical island vacation
with family swapped out for appointment slots.
The doctor who is not seeing her lunch break
will see you now, instead.
You both are tired of fighting
a system that feels it is better to explain
“benefits” than to explain why
none of this is fair, why your pain
will not break with the fever.
We can’t explain why the cancer spread,
its roots strangling the beating heart.
We can’t explain the silent prayers
sent up in parking garages late at night
when the city lights blink off.
The explanation of benefits is simple, really:
Sit with us, outside on the sun-bleached bench
On what our brains will dub the Bad News Day
where the whole world stops and all that is left
are the parking garage prayers said outside, together.
Rx straddles the ledge
of the countertop
His hand shakes as he reaches
as the glass splinters
all over the floor
and into his foot
the droplets of life
now mingled in with the dirt
from inside and out
holes punched in the wall
of the kitchen
where he can no longer feed
without those tiny droplets.
What good is the dirt?
For a life that is so fragile
soft and precarious
so dependent on these molecules
it sure as heck
Video of our 2016 Stanford Medicine X panel, Ah-Ha! moments in mental health and chronic disease management, can be viewed here. The panel speaks for itself; it was brave to participate; it was brave to be a member of the live audience- at Stanford and/or online; it is brave to watch the video; it is brave to reflect on mental health and chronic disease management.
Photo credit: Stanford MedX Flickr
Featured image photo credit: Mark Freeman
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 firstname.lastname@example.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!
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 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!
Image credit: WEGO Health
***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:
Please read the bold text of the cover page, as it is very important to our data collection.
Sharing is appreciated. Thank you!