If insulin is biologically as accessible to you as clean water, an afterthought as the tap pours freely- do not put words in our dry mouths, having never dwelled in the desert all this time.
If insulin is biologically as accessible to you as clean water, an afterthought as the tap pours freely- do not put words in our dry mouths, having never dwelled in the desert all this time.
As I recently limped my way towards an endocrinology appointment post-foot-surgery (impending long blog story to follow when time permits), the two iconic names of Banting and Best jumped out from the wall of Joslin Diabetes Center, commemorating the 100th anniversary of the discovery of insulin in fashion.
My inner perfectionist was not a fan of the lighting of the photo below, as the bright Boston afternoon sun mingled with shadows across Joslin’s diabetes tribute wall. But then I realized that perhaps the most important words were highlighted after all, reminding us that the purpose in diabetes advocacy is to serve those touched by diabetes as best we can, to honor healing as a form of art.
And so the photo stands.
This bunny grazing nearby Longwood Avenue- otherwise known as the ‘nonstop sirens-filled hub of the best healthcare in the world’- was a peaceful reminder that life rolls on despite the noise.
Thank you to Banting and Best for giving so many of us the chance to enjoy life, 100 years later and counting. May we as a society find our way back to the selfless Banting and Best philosophy, and never stop fighting for equitable and fundamental rights to life, and quality of life, through accessible, affordable healthcare for everyone.
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.
Very Light, No Sugar is celebrating its third blogoversary!
Thanks to those from all over the world (99 countries!) who have read my website over the past 3 years. How humbling to see that our words are able to reach so far, and that we remain unified in our mission to kick diabetes to the curb.
This year provided different avenues of healthcare advocacy for VLNS.
Reese joined our ranks!
I am grateful to have traveled to Indy to participate in Lilly’s insulin access workshop at their corporate headquarters in April. (Yes, I still intend to blog on this; yes, I’ve drafted the blog many times, in my head and on paper; yes, I have disclosures: Lilly covered my travel, lodging, and meals.) More to follow, but briefly: It meant a lot to me to see the makers of and the history behind insulin firsthand, and to be able to advocate at that level for a better diabetes world.
Also new this year, VLNS has dabbled in No Rules (free verse) Poetry. Poetry is fluid; it is not always autobiographical; it allows us to explore beyond the usual confines of writing. I am super excited for my tickets to see Neil Hilborn during his upcoming, mostly-sold-out U.S. tour! Mental health and poetry- these are a few of my fav-o-rite things right now, and no one does them better than Neil.
On that note, I believe strongly that sometimes our best advocacy is to simply be honest- even brutally so. Do I have regrets about blogging? Frankly, yes.
If I could go back in time, I wouldn’t have been so corny when first starting out in the DOC. (“We are diabetes warriors, waging a cliche battle, we will overcome, ahhh!”).
A hard lesson in reality this year is that sometimes, no matter how tough your armor, diabetes and other stuff still hurt like hell and feel like losing more than winning. Occasionally, I wish I could crawl back under my little rock and regain my privacy and my life pre-blog. Or that there was a non-live-tweeting-your-emotional-rollercoaster space where one could simply shout at the wall.
There are a lot of asks in advocacy, and it is hard to say no. But advocacy needs a better balance- taking our time (and having our time respected) when experiencing too much at once.
No matter what, I will always be appreciative of this website and its following. And I hope year #4 is productive and meaningful for all of us.
The most recent of Very Light, No Sugar’s Coffee Dates series took me to diabetes camp at Lions Camp Merrick in Maryland with Lilly Diabetes, performing artist Crystal Bowersox, and her awesome crew. This particular “Coffee Date” was more of a marathon “Coffeehouse” of sorts, as it included a live music performance from Crystal Bowersox, as well as a busy day packed with camp activities.
Before we dive into the recap of our day, I want to thank Lilly for having me. Additionally, many thanks to Crystal for letting me tag along and learn more about her.
Regrettably, I did not get to attend diabetes camp as a child. Decades later, I finally got to experience camp for the first time during our trip to Lions Camp Merrick, and I left feeling inspired and reinvigorated by the spirit of everyone there. Thank you!
My disclosures for this experience are the following: I accepted Lilly’s invitation to attend camp with Crystal Bowersox. Lilly paid for my travel, hotel, and meals. Opinions expressed are my own.
We arrived at Lions Camp Merrick, where a camera crew was ready to document Crystal’s camp experience (see here for a video snapshot of the day). Our first stop was the arts and crafts room, where we made slime! The campers were thrilled to see American Idol 2010 runner-up and person with diabetes Crystal Bowersox, who gracefully yielded questions from everyone. We each took turns in the slime-making process- stirring up the various ingredients, such as glue and food coloring.
Upon learning that I had diabetes, too, one camper proclaimed, “When I grow up, I want to be a biochemist so I can cure type 1 diabetes!”
That quote embodies the spirit of each camper we met: These kids deal with a lot at a young age, but they remain enthusiastic and engaged in the world around them. Camp is a place to relax, hang out with friends who “get it,” dream big, and just be a kid.
Another camp attendee was there for “Siblings’ Week,” in which the siblings of kids with diabetes can also go to camp. For psychosocial reasons, I love that such integrated supports exist for all members of the family.
Up next, we went to the obstacle course / climbing wall area, where Crystal and her tour manager and band member, Derick, were the first brave souls to scale the wall, taking diabetes and exercise to a whole new level- literally!
At lunchtime, the camp staff helped the campers to calculate carbs and best-guesstimate boluses. Diabetes is unique to each individual, and it can be especially tricky when the exercise and adrenaline of camp are thrown into the picture. My hat is off to the camp counselors, who oversaw all of the campers and handled any blood sugar bumps in the road with confidence, expertise, and poise.
After lunch we all gathered in a conference hall to watch Crystal’s live performance. She absolutely rocked it with “A Broken Wing” from her latest album, Alive. The chorus from this song, “even the bird with the broken wing sings from the ground,” is so reminiscent of life with type 1 diabetes. Even on the difficult days, our resilience allows us to rise again. (Sidenote: The entire Alive album is teeming with creative lyrics, Crystal’s signature vocals, and live-recorded music. I highly recommend cranking the volume up and belting out some tunes while driving down the freeway.)
The audience was well-prepared for the question-and-answer (Q & A) session following Crystal’s performance. Some highlights [paraphrased] include:
Q: Do you like turtles?
Q: Do you like hamsters?
Q: What was your A1c during your DKA [diabetic ketoacidosis] experience while filming American Idol?
A: [paraphrased] A1c at the time was decent. DKA has more to do with the immediate need for insulin in the body than the 3-month average blood glucose portrayed by the A1c result. The experience taught Crystal that in order to feel her best and enjoy what she loves (performing), she has to prioritize managing her diabetes.
Q: Would you change anything about your time on American Idol?
A: [paraphrased] There is so much to be thankful for, stemming from Crystal’s American Idol experience, that she would not change a thing. Crystal now gets to do what she loves every day, including touring diabetes camps as a Lilly Ambassador this summer and meeting so many great people along the way.
While observing Crystal’s performance, I noticed a few campers with the pale, shaky “hypoglycemia look” that I know all-too-well myself. They approached the camp counselors to inform them of the situation, checked their blood sugar, and were handed small cups of juice or glucose tablets to treat the low blood sugars. This was all done calmly and in a composed fashion. Low blood sugar can be serious, which is why it was treated promptly. The vibe given off at camp was that the highs and lows were something we could deal with and then get on with our day, just another example of why camp can be so empowering.
After the Q&A session, Crystal then individually met with each camper to sign autograph cards, take photos, and chat some more. This clearly meant so much to the kids; how cool to have their unique special moment with their role model! I will always respect Crystal for the time she took to connect with each person there.
Behind the scenes, I learned what helps camp to run so smoothly: A camp employee expressed his sincerest gratitude to Lilly for supplying the insulin at camp. Lilly also provides Camp Care Packages, as well as scholarships. Camp has been illustrated to have a positive impact on attendees, as highlighted here.
As the camp and Crystal Bowersox prove, you can still have fun and enjoy success despite diabetes. We are equipped to handle whatever diabetes throws at us, and peer support, like that found at camp, is invaluable. Many thanks again to Lilly, Crystal Bowersox and her crew, and Lions Camp Merrick for a wonderful day.
Keep rocking on!
Photo source: Lilly Diabetes
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 email@example.com 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!
Elizabeth Rowley, Founder and Director of T1International, joins Very Light, No Sugar for the second interview in the Coffee Dates series. I encourage readers to visit the links included by Elizabeth and to help the #Insulin4All movement however you can.
A: What led you to develop T1International?
E: In short, I recognized how privileged I was to grow up in a place with access to good medical care and the supplies I needed to live a healthy life. I could not – and I still cannot – understand why health is not treated like a human right for everyone around the world.
As I learned more about what people with type 1 diabetes face in all parts of the globe, I wanted to address the problems by working with people most affected. I could not find any other groups tackling the issues through advocacy, so I thought T1International could bring the diabetes community together to ensure that no one dies because they cannot access or afford something as basic as insulin or test strips.
A: T1International’s current campaign of #Insulin4All has been making lots of good noise on social media. What is one simple, immediate way for individuals to help out the cause?
E: Sign our Access Charter and spread the word. It takes two minutes to sign and shout about this on social media. Signing will not only show that you support five basic rights for all people with diabetes, but it will also add to the growing list of individuals and organisations who support these rights worldwide.
Advocates around the world will use this charter and the signatures as evidence for the growing global support behind the #insulin4all movement. It will allow advocates for type 1 diabetes to prove to the government that there is international support and pressure for sufficient access to insulin, diabetes supplies, care, education and protection for everyone with diabetes.
A: There is a persistent call for transparency in the insulin access and affordability realm. Ideally, what would this transparency look like?
E: In one sense, transparency would mean that pharmaceutical companies would no longer be allowed to raise or set prices for their products without true justification. The excuse that research and development is the main reason for high prices is not cutting it anymore. Insulin pricing is currently a mystery. Costs vary wildly around the world, and even within a single country. Simply being able to know the cost of production and the true list price that companies set for a drug like insulin would be a huge step forward in transparency.
Transparency is also important when it comes to patient advocacy organisations. It is important for all of us to think about how much potential there is to be influenced or ‘bought’ by industry. A recent USA study found that 67% of a sample of patient advocacy organizations (virtually all of which were not for profit) said that they received funding from for-profit companies. Relationships between patient organisations and industry can influence their actions “in ways that might not align with the interests of the constituencies they represent.” The same article notes evidence that financial relationships can create bias in areas like medical research, so non-profits and patient organisations are subject to the same concerns. [Susannah L. Rose, PhD; Janelle Highland, MA; Matthew T. Karafa, PhD; et al]
Many diabetes organisations take money from pharmaceutical or device companies specifically. No one wants to compromise their income, but there is concern that orgs taking industry funding are keeping quieter than they would if their funding came from other sources. At the very least, organisations can be more transparent about where their funding comes from by having a clear declarations webpage that is obvious to visitors. We hope groups will consider that continually accepting funding from pharma companies often “creates a routine awareness among sponsored groups that one doesn’t bite the hand that feeds it.” [Ray Moynihan, PhD; Lisa Bero, PhD]
A: We have discussed the great power of personalizing the insulin story. Give us one brief narrative of how T1International’s work directly influences the life of someone with diabetes.
E: It is literally the difference between life and death. It is also the difference between feeling alone and knowing you have a community rallying behind you. Salomey and [her] mother in Ghana had to sell most of their belongings to be able to afford Salomey’s insulin – they were running out of options. With support from a local group (Diabetes Youth Care) and T1International, Salomey was able to get the supplies and support she needed. She finished high school in 2015 and she is working to ensure she can purchase the supplies on her own. T1International continues to work with Salomey and other Diabetes Youth Care advocates in Ghana on a larger scale, advocating for #insulin4all so that Salomey’s story will be replicated many times over.
A: Where do you see T1International’s work going in future years?
E: All of our work moving forward will support our strategic plan, which focuses on four different areas including:
More specifically, in the near future we plan to carry out online advocacy trainings focused on the content from our advocacy toolkit. We would like to hold open sessions for advocates to come together to talk about best practice, share ideas, and talk strategy related to the specific issues they want to tackle locally or globally. Further afield, we would like to do larger, in-person training sessions with groups around the world. In the meantime, we won’t stay quiet about the need for transparency and #insulin4all!
A: Is there a specific geographical area that is high on the priority list for insulin access assistance in 2017?
E: It is impossible to prioritise one country over another when so many people are still dying from type 1 diabetes in so many countries. We would like to see more data collected, perhaps through establishing diabetes registries, in Africa as a whole. There needs to be more government prioritisation of access to medicines in nearly every country, which is why we are committed to supporting people and communities worldwide.
A: Favorite beverage?
E: Flat white 🙂
Many thanks to Laura Marston for joining us as the inaugural guest on Very Light, No Sugar’s Coffee Dates interview series. With a template similar to the brief “getting to know you” interviews in pop culture magazines, VLNS’ Coffee Dates provides a snapshot of important people, entities, and topics in the healthcare world.
A: I just have to ask: How badass is it to be a video game lawyer?
L: It’s an absolute dream job. I work alongside the most brilliant minds in the gaming industry (*cough* Todd Howard *cough*) and work for a truly incredible company. Plus, after spending ten years working for large law firms as an IP trial attorney, I’m just happy I don’t have to wear a suit. 🙂
A: You have elevated the insulin access and affordability causes through Twitter and interviews with the likes of the Washington Post. Even President Obama has noticed your humble yet lifesaving advocacy! What would you recommend to individuals looking to get more involved, whether at the local level or beyond?
L: Start small. Start anywhere. TELL YOUR STORY because it’s important and it matters. You may be surprised who relates (in my case, it happened to be Senator Bernie Sanders!) Passion and the truth will trump greed and lies every. single. time. And our passion is endless because our lives literally depend on this issue.
A: If you were to describe the affordable insulin cause in 140 characters (give or take- humor me here!) to someone who does not know much about diabetes, what would you highlight?
L: The patent for insulin was sold in 1921 for $3. Almost 100 years later, a month’s supply of insulin costs over $1,000. The price of insulin affects not just the un- or underinsured, but all of us. Our country was founded upon the individual rights to life and liberty. All humans need insulin to live, and injections of insulin are necessary to sustain life for T1Ds. Thus, access to insulin is a basic, fundamental human right.
A: What’s up next for 2017?
L: Look for more localized advocacy work, as well as a federal advocacy initiative highlighting the importance of the ACA in the wake of skyrocketing insulin prices. Anyone interested in getting involved in our US-specific insulin advocacy efforts should contact me at firstname.lastname@example.org.
A: Cream in your coffee?
L: Cream + about a million Splenda. 🙂