How To Advocate For Yourself With Diabetes

What is the importance of patient advocacy? 

Advocacy is defined as “public support for or recommendation of a particular cause or policy.” The terms healthcare advocacy or patient advocacy may be used to describe people with certain health conditions or concerns advocating for themselves.

People with diabetes didn’t always have as many rights as we enjoy today.

As someone with a “preexisting condition,” people with diabetes found this a reality:

• could not hold certain types of jobs
• weren’t always allowed to manage diabetes or treat the condition in school or professional settings
• weren’t able to attend certain schools or day care centers
• were barred from many sports teams
• had not guarantee of health insurance

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 much more work to be done.

“People with diabetes have to stand up and advocate for fair and equitable treatment in all aspects of their lives,” said Stewart Perry, board chair of the Diabetes Leadership Council. “Advocate for yourself and for those who can’t, whether it’s in a doctor’s office, at work, or on Capitol Hill, or your own state legislature.”

How can I get involved in patient advocacy? 

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 on popular social media platforms, where they raise their collective patient voice to share their stories and concerns. Many find camaraderie with other people facing similar issues. Searching the hashtag #insulin4all will connect you with hundreds of people with diabetes who are passionate about this issue in an instant.
• Get involved with the Diabetes Patient Advocacy Coalition (DPAC): This national diabetes advocacy group coordinates action at the state and federal levels. YDPAC regularly advocates on both state and federal issues, including access to continuous glucose monitors, more affordable insulin, and fairer health insurance practices.
• Organize locally: Find others living with diabetes with whom you can share your joys and struggles. Creating grassroots support can also lead to change. 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.
• Advocate with the American Diabetes Association: This national organization is a leader in advocating for people with diabetes. You can sign up here. They regularly host events and advocate for change at both the state and federal levels.
• Become a Breakthrough T1D advocate: Formerly known as JDRF, this 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 the Beyond Type 1 and Beyond Type 2 communities: This California-based organization promotes #LivingBeyond with team events, regular T1D and T2D meetups, online gatherings, and more. Here, you’ll also meet many like-minded folks who want to collaborate on advocacy efforts.

Tips to advocate for yourself: A D-Mom’s POV

In Massachusetts, D-Mom Moira McCarthy Stanford has been a vocal voice in diabetes advocacy for years since her daughter was diagnosed with T1D as a 6-year-old in 1997. She’s served in leadership roles advocating with national and state diabetes organizations, leading change for the Diabetes Community on many issues.

Here is her advice on empowering yourself to be better advocates and pushing for what you need to life with diabetes:

• No one diabetes advocacy goal is the correct one. There are many ways to better the world for people with diabetes. These may include cure research, diabetes camps, school rights, insulin affordability, and more, all of which are efforts. Working toward what motivates you most helps make advocacy not only more powerful but also more fun and meaningful.
• Find the organization(s) that also focus on what you are passionate about and join up. If a reputable group is already teed up to work toward the goal or mission you care about most, you can truly hit the ground running.
• Creating your own program when one or more are focused on the same goal is a bit like building railroad tracks right next to ones already going to where you hope to go.
• If no one is focused on something you care about, consider starting thing up on your own. Insulin For Life is a great example of an organization that came from a need that wasn’t being served (insulin access and affordability for people who needed it most).
• No matter their age, all children have the right to have their voice, face, and needs used as a tool toward a better world—no matter how important that is—with their approval. If you get into a mission and your child does not like being a part of it, honor that.
• Make friends with your elected officials. Attend their open houses, shake their hands, and introduce yourself at every event they attend. Then, schedule a meeting with them—and once you do, respect their time and focus. Cooperative partnership with those in power pays off.
• Use social media wisely. Don’t flood your feed with your needs. Rather, be strategic in your asks and posts. Don’t burn out your audience. That way, when you ask them to take action, they will. Melodrama isn’t necessary, and a lot of it can negatively impact the view of your child if you are advocating for them – or even for you.
• Every year, give yourself an advocacy vacation. It’s hard work, and it really is, yes. But the refreshed and ready person is the one who gives him or herself a break.

Advocacy wins led by the diabetes community  

Some examples of policy wins by diabetes patient advocates include:

The Alec Smith Insulin Affordability Act

This Act, enacted in 2020, came after several years of continued advocacy by Minnesota insulin pricing advocates, led by Nicole Smith-Holt and her husband, James Holt. The law is named after Alec Smith, Nicole Smith-Holt’s 26-year-old son, who died in 2017 after rationing his insulin, because he couldn’t afford the $1,300 monthly cost of this life-sustaining medication.

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, other states have passed similar legislation to ensure that no one who needs insulin ever has to go without.

“Patients are absolutely essential as part of any policy-making or policy development process,” said Elizabeth Pfiester, founder and executive director of the global advocacy group T1International. “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.”

Insulin copay cap laws

More than 20 states and the District of Columbia have passed laws capping the amount of insurance co-pays on insulin.

Colorado was the first state to take this step in 2019. It was led by Rep. Dylan Roberts, in memory of his younger brother who had died from complications of low blood sugar a few years earlier.

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 rein in runaway costs that are burdening consumers.

Each state’s laws are different and have certain restrictions, but generally, they are one way some people have found to help pay for insulin that they might not otherwise be able to afford.

Kevin’s Law for emergency insulin access

Kevin’s Law has passed in more than 26 states since 2016. This law allows a pharmacist to authorize and fill an emergency insulin prescription if someone comes to the pharmacy counter with an expired prescription and cannot reach a physician.

The charge for this legislation was led by Kevin Houdeshell’s family, after he died in 2014 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.

Raise your voice

Everyone’s voice matters, including yours.

The Diabetes Community is a strong one, with many voices that make a difference in so many ways. Everyone plays a part in helping to improve the lives of people touched by diabetes.

You can take simple steps to raise your voice and empower yourself to advocate for or get what you need for a healthy and happy life with diabetes.