Over the years, patient advocates have fought many hard-won battles to improve the lives of people with diabetes, both inside and outside of the legislature. But there’s still so much work to do.
Many people living with type 1 diabetes (T1D) want to become involved in advocacy to make a difference, but don’t know where to begin.
To help you get started, DiabetesMine has compiled this guide to patient advocacy: what it is, why it’s important, and how you can get involved and lend your voice to a movement that can change people’s lives for the better.
So, what exactly is “patient advocacy”? According to its definition, advocacy is “public support for or recommendation of a particular cause or policy.”
People with diabetes didn’t always have as many rights as we enjoy today. In fact, before the Rehabilitation Act of 1973, people with diabetes were routinely discriminated against.
We couldn’t hold certain types of jobs, attend certain schools or daycare centers, were barred from many sports teams, and weren’t even guaranteed health insurance due to a little clause known as “having a preexisting condition.”
Section 504 of the Rehabilitation Act of 1973 changed much of that, for the first time ever granting certain protections to people living with disabilities in the United States.
Subsequent laws, including the Americans with Disabilities Act of 1990, added even more protections for people living with disabilities (including diabetes), especially in school and work settings.
Today, people with diabetes cannot be discriminated against in schools or on the job, we can play on any sports team we wish (including at the Olympics!), and we are allowed to self-manage our illness whenever and wherever we choose (imagine being forced to always go to the bathroom to check your blood sugar!).
But these wins didn’t come without a fight. Countless disability advocates worked tirelessly educating legislators, holding rallies, engaging the public, and persuading changemakers that people with diabetes deserve to enjoy all of the same rights as everyone else. But there is still more work to be done.
Stewart Perry, board chair of the Diabetes Leadership Council, says, “People with diabetes have to stand up and advocate for fair and equitable treatment in all aspects of their life. Advocate for yourself and for those who can’t, whether it’s in a doctor’s office, at work, or on Capitol Hill. Until there’s no diabetes, I’m going to keep standing up.”
Patient advocacy is still crucially important today, because there are still many battles to be won.
People living with T1D still face discrimination and are held back on a daily basis. Insulin is more expensive than ever before, people are negatively affected by discriminatory health insurance practices such as step therapy and non-medical switching, and injustice is experienced in both private and public schools and places of employment.
People with diabetes need to make their voices heard to push for fairer policies, protections, and laws that will improve our lives, and that means everyday people getting involved. You don’t have to be a lawyer or other expert. In fact, legislators and leaders at the
Gail deVore, a patient advocate in Denver, Colorado, told DiabetesMine: “It’s so important that we share the serious impact that high [insulin] prices have on our lives, be it rationing, going without needed school supplies for kids, limping along trying to make ends meet, while still living above Medicaid [qualifying] income levels, trying to afford insurance, saving for retirement, going [or not!] on vacation… Those in power can’t see the effects that high insulin prices have on our lives unless we speak up!”
There are many ways that you can get involved in advocacy, but a few of the easiest ways are as follows:
- Engage with the Diabetes Online Community (DOC). People with diabetes have gathered together on popular social media websites such as Facebook, Twitter, and Instagram, where they raise their collective patient voice to share their stories and concerns, and find camaraderie with other people facing similar issues. Searching the hashtag #insulin4all will connect you with hundreds of people with diabetes passionate about this issue in an instant.
- Find out who your State Senator and State Representatives are, by looking them up on the Diabetes Patient Advocacy Coalition (DPAC) website, and scheduling a meeting via phone or virtual to get to know them. Tell them all about your life with diabetes, and share your concerns. You never know when you’ll find an elected official who’s a true diabetes advocate!
- Write to your members of Congress. They love hearing from constituents! Share any concerns you have that can be addressed on a federal level — whether that’s federal price caps on insulin, expanding the eligibility for Medicare, or just talking about the high cost of insulin in general. Better yet, call them or visit them in-person if you’re ever in Washington, D.C. (and protocols permit).
- Organize locally. Simply look up “type 1 diabetes” or “T1D” on www.meetup.com and find others living with diabetes who you can share your joys and struggles with. Creating grassroots support can lead to change as well. Perhaps your group can organize an affordable insulin rally at your state’s capitol, meet with your elected officials as a group, or raise money together for a cure by hosting a fundraising event.
- You can sign up to be an advocate with the American Diabetes Association at this link. They regularly host events and advocate for change at both the state and federal level.
- T1international, the original UK-based #insulin4all group formed around the need for more affordable insulin around the world, has 38 chapters in the United States. You can join (or lead!) a local group to advocate for lower insulin prices.
- Become a JDRF advocate. JDRF, which initially stood for the Juvenile Diabetes Research Foundation, is a nationwide nonprofit advocating for increased research funding for a cure for T1D. They regularly host events and advocate for more research dollars dedicated to our cause, with chapters all around the country.
- Join DPAC by becoming an advocate here. They regularly advocate on both state and federal issues including access to continuous glucose monitors, more affordable insulin, and fairer health insurance practices.
- Join the Beyond Type 1 community, where they promote #LivingBeyond with team events like running the NYC Marathon (all runners have T1D!), regular T1D meetups, a so-called Snail Mail club, online gatherings, and more. Here, you’ll also meet many like-minded folks who’ll want to collaborate on advocacy efforts.
Some examples of policy wins by diabetes patient advocates include:
The Alec Smith Insulin Affordability Act
This Act passed in April 2020, after several years of continued advocacy by Nicole Smith-Holt, her husband James Holt, and other insulin pricing advocates from Minnesota, including former Congressional candidate, Quinn Nystrom. The law is named after Alec Smith, Nicole Smith-Holt’s son, who died 26 years old in 2017 after rationing his insulin, because he couldn’t afford the $1,300 monthly cost of this lifesaving drug.
The law created an insulin safety net program in the state of Minnesota that provides a 30-day emergency supply of insulin for $35 for people who qualify, as well as a longer-term program that provides 90-day supplies of insulin for a $50 copay for a year. Since that win, both Maine and Colorado have passed similar legislation to ensure that no one who needs insulin ever has to go without.
Elizabeth Pfiester, founder and executive director of T1International, says, “Patients are absolutely essential as part of any policy-making or policy development process. From the highest levels of policy development to the grassroots, if entities are not treating patients as experts, policy will not be strong and will not address the most pressing needs of people living with diabetes. Corporate interests often dominate these conversations and processes, which means the needs of patients are quieted or completely silenced. Independent patient voices are a must.”
Insulin copay cap laws
These laws have now passed in more than 20 states (plus the District of Columbia). This legislation first passed in 2019 in Colorado, and was led by Representative Dylan Roberts, who still dedicates much of his public service career to lowering prescription drug prices, including insulin. Roberts is familiar with T1D; his younger brother Murphy died from complications of a low blood sugar in 2016, and Roberts ran the legislation in part in memory of him. The law mandates that state-regulated health plans cap their monthly copayments of insulin to $100 per 30-day supply — regardless of the number of prescriptions needed — helping to reign in runaway costs that are burdening consumers.
“State lawmakers have to consider hundreds of bills every session, so it is an unfortunate consequence of that workload that many policies can lose a human connection. When we were working on our insulin bills, I saw that patient voices coming to the Capitol [in-person and virtually] made an immense difference in getting the bills passed,” Roberts told DiabetesMine.
“Since a lot of legislators did not have a personal connection to diabetes [or even understood what insulin was], it was these real-world stories of struggling with the cost of insulin and the basic explanation of what it is like to be a person with diabetes that made these bills emotional, personal, and thus, necessary to pass. I know from conversations with my colleagues that testimony from patients was the main factor in them switching their votes from ‘no’ to ‘yes’ and that is incredibly powerful and rare.”
Kevin’s Law for emergency insulin access
Kevin’s Law has passed in more than 17 states. This law allows a pharmacist to authorize and fill an emergency prescription of insulin if someone comes to the pharmacy counter, but their prescription has expired, and reaching a physician proves futile.
The charge for this legislation was led by Kevin Houdeshell’s family in 2015, after he died over the New Year’s holiday weekend in Ohio when he ran out of refills for his insulin prescription and was unable to reach his physician for a new prescription. He was turned away at the pharmacy counter and later died of DKA (diabetic ketoacidosis).
Safe at School laws
These laws are added to state protections that make sure students with diabetes have everything they need to be safe in the school environment to manage their diabetes appropriately. These laws mandate that schools allow and provide:
- a student to self-manage their diabetes whenever and wherever they need to
- a trained staff member to administer glucagon to a student in an emergency situation
- a trained staff member to administer insulin injections if a student is too young or unable
Now, the majority of states offer these protections for students living with diabetes.
If it hasn’t become clear by now, the message here is that everyone’s voice matters. We all have a part to play in helping to improve the lives of people touched by diabetes.
Advocate deVore, who had the opportunity to meet recently with President Biden, put it best when she said: “Making those in power finally hear our collective voice, that is the one single way for policymakers to change their minds and change their votes to make the changes we are asking for and so desperately need.”