In just a few days, I'll be part of a group standing outside Eli Lilly headquarters in Indianapolis raising my voice to protest outrageously high insulin prices.

Yes, we'll be chanting, and carrying signs marked with the #insulin4all rally cry and phrases like "Insulin = Life," "Insulin's Not Advil, It's Oxygen,” and of course "Lower Insulin Prices!” -- to underscore the Diabetes Community’s call for more transparency from the insulin makers, who play a big role in setting prices for this vital medication.

Because the struggle is real, and the stats don't lie: Retail prices now exceed $300 for a single vial of insulin, and more than half of those whose lives depend on this drug are exposed to these crazy-high pricetags at some point, even with insurance coverage. In the 21 years since Humalog first hit the market, it’s gone up roughly 1123% (!) compared to a 56% overall inflation rate during that same timeframe.

The protest is happening on the afternoon of Saturday (Sept. 9) in downtown Indy. On the day prior, Friday (Sept. 8), there’s also an “online day of action” aimed at calling on Congress to address the insulin pricing issue; that one is aimed at all three big insulin makers.

These efforts are spearheaded by the grassroots group T1International, a UK-based non-profit that created the #insulin4all hashtag and mantra just a few short years ago in 2014. Living up to its name, this group is truly international and has been expanding its US efforts over the past several months -- which I'm proud to be part of in some small way.

I’ll be contacting lawmakers on Friday and then on Saturday will be present in Indy, sharing the story of my own challenges to afford insulin and those of many folks I know who struggle as well.

I must admit, I'm a bit nervous about the latter -- mostly because I am keenly aware that insulin manufacturers are only part of the problem. It's not as if the insulin makers can just flip a switch to lower insulin prices, even if they tried; there are other forces at work, including players like Pharmacy Benefit Managers (PBMs) who must be taken to task as well.

It's a systematic problem being discussed and addressed on many fronts (more on that below), and this protest is one more advocacy effort that can help raise public awareness.

Why Protest Insulin Makers?

So why am I individually involved in this?

In the past, I've faced an unaffordable $700 monthly tab for just my insulin that left me reeling and searching for help, constantly worried about where my next vial may come from, thanks to a high-deductible that had to be met before my insurance coverage would kick in. I was fortunate to know about and be able to tap into resources around the D-Community.

These days, I have good insurance coverage and pay only a fraction of the retail pricing. I'm one of the lucky ones.

But if not for the grace of insurance, it would cost me a minimum of $1,397 for a single box of Tresiba and Novolog pens per month.

That's ridiculous.

But it's nothing compared to the stories out there of people resorting to expired insulin, launching crowdfunding campaigns or facing financial ruin as a result of their insulin and diabetes costs. As our community well knows, some have even died because they couldn’t afford insulin and weren’t able to tap into the existing resources for help. The human cost of this insulin affordability crisis is heart-breaking.

Personally, I believe something's been missing from all the policy discussions to date: put simply, an organic "people in the streets" component, reflecting the frustration and helplessness that so many in the D-Community are experiencing.

We’ve seen so many marches and protests of late addressing healthcare, social issues, and politics lately. Some get out of hand and erupt in violence, while others -- like the March for Health in April and the recent healthcare reform protests on Capitol Hill -- have been more measured and (arguably) effective. 

But no one has taken to the streets yet specific to insulin prices -- surprising given how it affects so many people and is quite literally a matter of life and death. For this weekend's protests, there are three asks to the Insulin Makers:

  1. Be transparent about how much it costs to make one vial of insulin.
  2. Be transparent about every dollar earned and spent on insulin -- including R&D, profits earned, and the money exchanged as part of the drug pricing process.
  3. Lower insulin prices.

Clearly, that third one is 'pie in the sky' to make a point. No one expects a sudden price drop as a result of a street demonstration, but the messaging is clear that the pricing system is broken and must be fixed.

Lilly Diabetes is just one of three big insulin manufacturers controlling most of the country and world market. Novo Nordisk and Sanofi have equal roles here, and protests are already in the works in front of their company buildings in New Jersey.

But starting with Lilly makes sense, given they are the original insulin company, and also, the sponsoring non-profit group People of Faith for Access to Medicines (PFAM) happens to be located in Indy.

Insulin Affordability - Policy Efforts

Protests like this are an important piece of the patchwork of advocacy efforts that patients across the country are taking on to address the convoluted drug pricing crisis in America.

In regards to diabetes specifically, here are the top initiatives we've taken note of:

  • National Focus on PBMs: Last Fall, the National Diabetes Volunteer Leadership Council (NDVLC) held a first-of-its kind gathering to discuss and better understand this issue. That had been in the works for some time, and it led to actual data that can be used to address the issue. Since then, a focus on PBMs’ role in higher insulin pricing has been mapped out and is slowly starting to roll out.
  • JDRF's Focus on Payors: The T1 org has been pushing for more affordability and access through insurance coverage and that includes meeting with payors and manufacturers to discuss this issue. The JDRF's senior director of health policy and government relations, Jesse Bushman, says the group is organizing a broad-based petition to allow the public to weigh in with their insurers on this topic; it has also publicly urged manufacturers and payors to pass on their negotiated reductions in drug prices to the patients who use those drugs.
  • American Diabetes Association Initiatives: The ADA more recently formed its own Insulin Working Group to discuss the issue and work on potential solutions. That combines with the org’s efforts in creating a “Make Insulin Affordable” petition that has a quarter-million signatures to date, and has been presented to Congress – an effort that we’ve been told by lawmakers has actually made them more aware of this issue and focused on supporting drug pricing legislation. We're told the working group -- which the ADA declined to say who is a part of, except that it involves all stakeholders -- began meeting regularly in May 2017 and as of now, there's no official timeline for what the group will discuss or recommend.
  • Federal Legislation: There have been multiple legislative efforts, such as regulations on Medicare negotiations in drug pricing and other important transparency and price control proposals. Sen. Amy Klobuchar has called out the insulin makers, and others have introduced specific legislation aimed at increasing generic competition, importing drugs deemed safe by other countries, and increasing transparency in our US drug pricing process. This is where the Diabetes Patient Advocacy Coalition (DPAC) group has been very active, helping us connect to lawmakers through email, letter-writing, social media or phone to urge their support and consideration for improved legislation. I've used the DPAC app myself a number of times to phone my Congressional members, and connect with their staff to raise my voice. This is what I'll be using on Friday, Sept. 8.
  • State Actions: Most notably the landmark law passed in Nevada in June 2017 that calls for more drug pricing transparency and focuses on insulin pricing specifically. Pharma’s trade groups are now suing, so who knows what will come from this, but other states are mirroring these proposals in certain ways and it’s clearly a national trend.
  • Class action litigation: These are another important channel for exerting consumer pressure, and a line of lawsuits are working their way through federal courts aimed at Pharma, PBMs, and others involved in the process. The hope is to force these organizations to shed more light on that infamous 'black box' of insulin pricing, particularly when it comes to rebates and discounts.
  • Big Insulin Efforts: The Patient Assistance Programs they offer are essentially Band-Aids and don't address the core pricing problem, but they are important in helping some folks get access to medications they couldn't otherwise afford. Manufacturers are working to improve these offerings as a stop-gap until big change can materialize. Other discount programs are available too, as are older, less-reliable insulins, as last-resort measures.
  • Free Market: And let's not forget about the free market, which clearly has been the running joke in this whole insulin pricing process over the years, but may now actually be on the verge of spurring lower insulin prices... Novo has specifically noted lower prices may be in the works for some insulin, and newer follow-up insulin types being developed could eventually lead to lower costs... (?)

So yes, I'm grateful for these efforts and I do think change is happening. But no, I don't think it's happening fast enough or effectively enough.

I thank T1International for tapping into the frustration among the affected, and channeling it into grassroots activities that we can all personally get involved in -- with the hopes that our outcry will help move the needle for real (no pun intended) on access to life-sustaining insulin.

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.