The Power in Numbers: Change.org’s Affordable Insulin For All Movement

3/23/20
WRITTEN BY: Lala Jackson
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Editor’s note: Thank you to the Change.org team in New York City for speaking with us about their efforts to support insulin pricing advocacy. Read on to learn how to lend your voice. If you or a loved one are struggling to afford insulin, learn more about the options that exist here.


 

If you search insulin on Change.org, you’ll find 320 petitions (as of this writing, ~10 are being added each week), many with 50,000, 80,000 and even 470,000+ signatures. 

One of the first petitions on insulin pricing that went on to create legal change was in Colorado. Started by community organization Healthier Colorado, the petition became a catalyst for Colorado being the first state to create a price cap on insulin for insured state residents. 

Seeing the effect the petition had, and as insulin pricing became an increasingly publicized issue, Change.org elevated the conversation around insulin pricing by creating a dedicated Movement Page. The team wanted to create a space where people can have their voice heard and lean on the power of numbers. 

A Quick History of Insulin Pricing

As recently as the late ‘90s, a vial of insulin in the United States cost $25 without insurance. Ten years later, the price had increased to $125. Now, a quick search of retail insulin prices puts a single vial at $333 – $371. Coupons from services like GoodRx and recent programs from insulin manufacturers can sometimes bring the cost down to anywhere from $100 a month total to $130 a vial. 

Prices vary significantly for those on insurance – some people are required to pay out-of-pocket retail costs for insulin until they reach their deductible, often shelling out thousands of dollars in the first few months of the year.

Others bypass deductibles and go straight to co-pays of anywhere from $15-$100 or more, but formularies – listings from the insurance company on what’s covered – change from year to year. A person who relies on one form of insulin and has been able to get it at a manageable co-pay may all of a sudden need to switch insulins, even if the covered insulin type may not work well for them, or be forced back into retail prices. 

The reason why prices have gone up so drastically is a matter of great and cloudy debate in the U.S. A convoluted system between insulin manufacturers, pharmacy benefit managers (PBMs), and insurance companies leads to constant rounds of each entity pointing fingers at the other. Numerous advocacy groups are working to address the issue and break down the complex system. 

Change.org’s Approach

Started in October 2019, Change.org’s Affordable Insulin for All Movement Page features petitions from 28 states and growing, as well as certain key petitions calling on drug manufacturers and insurance companies to offer affordable insulin at a predictably consistent cost. The page also features petitions from Colorado and Illinois, where insulin price cap laws have been passed, marked with a victory button. 

Among the 300 insulin-related petitions, the 33 featured on the Movement Page meet a set of criteria the Change.org team uses to ensure the petitions have the most potential to impact meaningful change. Key to their potential is having a dedicated “starter” – the person who started the petition. 

Because large petitions can create a frenzy of media and political attention, the Change.org team checks in with starters of petitions who have strong stories and have already shown dedication to sharing and updating the petition. If the starter confirms that they would be willing to move quickly once the petition picks up traction, then the team gets into work mode.

First up is optimizing the starter’s story to ensure it is clear and impactful. Once the starter is comfortable and ready to share, the team then pitches the story to media outlets, usually in the starter’s home state. Some petitions get sent to Change.org’s membership base for additional backing from the greater community. If the petition is asking for legal change, the team will also share it with key legislators who have the opportunity to write decision responses directly on the petition page, weighing in on intended next steps.

Once a petition is on the movement page, things move quickly. Starters make themselves available to the media for interviews, meet with state representatives, testify at the state capital, and more. One of the most engaged insulin affordability petition starters is Julia Flaherty, from Wisconsin. Providing weekly updates on the petition, meeting with local representatives, and using her voice across media outlets has helped Julia get almost 63,000 signatures so far, with a goal of 75,000. 

Editor’s Note: Julia Flaherty is a contributing writer to Beyond Type 1

Using Petitions as a Way to Influence Lower Insulin Costs

Change.org is currently focusing on state-specific insulin price cap petitions. In their experience, the path to elevating a cause to a national platform is showing there’s state-by-state motivation and momentum to create change. State and local legislators are also typically more accessible than federal politicians.  

The call for insulin price caps look different from state to state. Some are dependent on insurance, looking at maximum co-pays or out-of-pocket costs for insulin. Others, like a recently proposed Tennessee bill, advocate for price caps no matter what, from the manufacturer to the pharmacy. While price cap laws are limited by the health insurance plans or systems within which the cap is placed, they have started momentum toward meaningful change. Creating a model for how price caps could be enacted on a smaller level could help scale the programs in future to positively impact more people. 

So far 28 states are represented but Change.org’s goal is to represent all 50 states and reach a combined 1 million signatures – they currently have more than 894,000 since the Movement Page began. Newly added state petitions are prioritized by where policy momentum is, which states are underrepresented, and which starters are ready to champion their petition to success. 

How you can help

There is power in numbers; the Affordable Insulin For All Movement Page only works if people participate, either by starting petitions or signing and sharing them.

Starters are needed from states that are not yet featured on the Movement Page. The Change.org team encourages anyone with a strong story who is willing to lend their voice and effort to start a petition. They stress that caring deeply matters more than experience. 

You can start a petition here.


If you or a loved one are struggling to afford insulin, learn more about the options that exist here.


Lala Jackson

Lala is a communications strategist who has lived with Type 1 diabetes since 1997. She worked across med-tech, business incubation, library tech, and wellness before landing in the T1D non-profit space in 2016. A bit of a nomad, she grew up primarily bouncing between Hawaii and Washington state and graduated from the University of Miami. You can usually find her reading, preferably on a beach.