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The type 1 diabetes (T1D) community is known for a lot of things: being helpful, offering crucial support, and maybe most importantly, being fierce advocates for better policies, rules, and laws, to live our lives more healthily and fully.
But what exactly is patient advocacy, and what does that mean in the context of T1D care and management? This article will outline what diabetes patient advocacy is and how you can get involved.
What is advocacy?
By definition, advocacy is the public support for or recommendation of a particular cause or policy. For the longest time in American history, people with disabilities, including type 1 diabetes, had very few rights: they couldn’t hold certain jobs, were banned from certain schools and sports teams, and even were not guaranteed health insurance due to having a “pre-existing condition”.
Fortunately, most of those restrictive laws have changed, and people with disabilities including diabetes are protected under Section 504 of the Rehabilitation Act that passed in 1973. This was the first American law guaranteeing certain rights to people with disabilities.
Subsequent laws, including the Americans with Disabilities Act of 1990, have offered further protection for people in the work and school setting. But those wins didn’t come without a lot of work, sweat, and sacrifice, and that includes the work of patient advocates educating legislators of our inherent worth, and persuading policymakers that we deserve the same rights and protections as everyone else.
Why is advocacy important?
That advocacy continues to this day. People with T1D still face discrimination in a wide array of settings: anywhere from daycare centers to public and private schools to places of employment, to health insurance companies and health care settings can and sometimes do discriminate against people with disabilities including diabetes.
Insulin is more expensive than ever before, and it’s the patient voice that is critical to stand up to the pharmaceutical companies and the insulin supply chain and proclaim that enough is enough.
It’s more important than ever that people with T1D have their voices heard to push fairer laws and policies to protect our health and well-being. Without the work of steadfast advocates standing up for our rights, we wouldn’t be where we are today, but there’s still so much further to go.
What are specific examples of how we can participate in advocacy?
There are many ways to participate in advocacy, but what is most crucial is focusing on the patient voice. We don’t want others speaking on our behalf! Type 1 diabetes is such an intricate lived-experience, and no one knows exactly what we’re going through, so it’s of utmost importance that our voices are at the table.
- The easiest and most accessible step for most is joining the Diabetes Online Community, or the DOC. People with T1D have created groups and forums on social media platforms like Facebook, Twitter, and Instagram; they are a welcoming community of like-minded individuals hungry for change. Simply by searching the hashtag #insulin4all can connect you with hundreds of fellow diabetes advocates.
- You can also sign up to be an advocate with the American Diabetes Association at: https://www.diabetes.org/advocacy/become-an-advocate where they regularly lobby for change and fairer policies at both the state and federal level.
- T1international has 38 chapters all over the United States plus more across the globe; you can join a local group to advocate for lower insulin and prescription drug prices.
- Join the T1D Exchange Registry as a way to share your voice! This is a research study designed to empower individuals living with type 1 diabetes. The goal of the Registry is to improve the lives of people living with type 1 diabetes, and has 3 key areas of focus:
The purpose of the Registry is to learn more about the management of type 1 diabetes, how different management styles correlate to Hba1c outcomes, complications, and use of the healthcare system, and how those management styles may change over time.
Examples of change led by patient advocacy
Some positive policy wins that were led by patient advocacy include:
Kevin’s Law, also known as emergency prescription refill legislation, allows a pharmacist to authorize and dispense an emergency supply of a chronic disease maintenance drug, including insulin, if a doctor cannot be reached.
Advocacy around this gained momentum in 2015, after the death of Kevin Houdeshell. Over the New Year’s holiday, Kevin’s prescription for insulin ran out of refills, and he was unable to contact his doctor’s office to get a new prescription. Kevin was turned away and sent home without insulin and tragically died. Many states have now passed protections, known as Kevin’s law, so this doesn’t ever happen again.
Safe at School laws give students the right to receive the diabetes management and care they need to be safe and healthy while participating in school activities just like any other child who doesn’t have diabetes. These laws mandate that schools provide the following:
- A trained staff member to test a student’s blood sugar if they’re too young or unable
- A trained staff member to administer glucagon in an emergency
- A trained staff member to administer regular insulin injections if a student is too young or unable
The majority of states in the U.S. have these protections for students with diabetes, and they are crucial to ensure that children and teens with diabetes receive the same quality education as children without diabetes.
The Alec Smith Insulin Affordability Act, named after Alec Smith, a 26-year-old Minnesotan who died in 2017 while rationing his insulin, which cost him $1,300 a month after he aged out of his parents’ health insurance plan.
This legislation, passed in 2020, created an insulin safety net program in the state of Minnesota where people with diabetes in urgent need of insulin can go to their pharmacy and get a 30-day emergency supply of insulin for $35.
Some people may also be eligible for the long-term program, which offers insulin in 90-day increments for $50 for up to one year. The movement around this legislation was led by Alec’s parents, Nicole and James, who vowed that no one else should ever have to ration their insulin due to cost. More states are following Minnesota’s lead.
Contribute your voice to patient advocacy, and you may change your life and the lives of countless people living with diabetes for the better! Get involved today!
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