The Power of Self Advocacy

9/19/19
WRITTEN BY: Katie Doyle
FacebookTwitterEmail
 

This article was published as part of a partnership between Beyond Type 1 and Insulet.



What a time to be T1D
 

It is an amazing time to be alive with Type 1 diabetes. Truly. And although we wouldn’t wish a T1D diagnosis on anyone, the advancements in technology and medications in the last decade is simply breathtaking. We live in a world where there is a range of CGMs to choose from, multiple pumps are being approved annually, two new glucagon formulations have been approved for the first time in decades, and patients have more choices than ever when it comes to their diabetes care.

At least, that’s the hope right? Sadly due to the nature of the health insurance system in the U.S., unlimited choices is rarely the case for people with diabetes. More commonly, people living with diabetes seem to be at the whims of their insurance companies, waiting to see what is covered to determine what type of treatment they get. And with new technology and medications being approved at rates never seen before, it often takes a while for health insurance companies to catch up.

Make noise

So what is a person with diabetes, their caregiver and healthcare providers to do when the best treatment option for their patient isn’t available due to insurance coverage? To put it simply: Make noise, tell your story and don’t ever give up. An insurance denial is not a final decision, and a ‘no’ is not the end, it is often just the beginning.

In a short video testimonial, Teresa Miller, a JDRF board member, caregiver and mother to a son with T1D, recalls when CGMs were new to the market and health insurance providers did not offer coverage. She began writing letters to her insurance company’s Pharmacy Review Board, eventually clearing a pathway for her son’s CGM to be covered.

Miller recognizes the strength of the diabetes community, stating “When you advocate with the insurance company, the more people that do that, the more likely it is that an insurance company will change their policy.”

Acknowledging the issue 

Insulet’s Omnipod DASH was approved by the FDA in 2018, and made widely available in US pharmacies in April of this year. Despite being approved over a year ago by the FDA, there are still some health insurance companies that do not cover the new pump, including some that covered the previous generation Omnipod. And while Insulet continues to negotiate with insurance providers to gain additional  coverage of the Omnipod DASH,  they believe the strongest and most influential voice is that of the person with diabetes and their care team.

That’s why the makers of the Omnipod DASH set out to provide a portal for people living with diabetes and those responsible for their care.  Last July the company announced the creation of www.advocacyforaccess.com, a website with a focus on educating, empowering, and mobilizing the diabetes community to drive affordable access to medical devices and medications. The site provides tips, helpful tools, customizable templates, and testimonials from self-advocating PWDs.

“Many people do not know how to advocate or do not know where to start,” said Theresa Parsons, Senior Manager of Advocacy at Insulet. She explained that the tools provided in this initiative are an internal priority “because while Insulet is working diligently with insurance companies to accelerate wide access for the Omnipod DASH System, Insulet also believes in the power of advocacy at the grassroots level.”

A resource for access

Realizing that the diabetes community were the experts in self-advocacy, Insulet reached out to patient advocacy organizations like DiabetesSisters to help make the site as robust and helpful as possible. Anna Norton, CEO of DiabetesSisters, appreciated that Insulet sought out the advice of organizations like her own when creating the site.

“We had the opportunity to work with Insulet because we had developed some materials to empower our own community: information on non-medical switching, how to appeal an insurance denial for diabetes medications or devices, and other worksheets,” she said. “Collaborating with Insulet just expands the reach that resources like this have across the diabetes space.”

Norton said that although she has personally experienced headaches with getting diabetes supplies, she feels grateful for the resources available to her through her role with DiabetesSisters that allow her to minimize the personal and professional frustrations of overcoming challenges that many PWDs face, like faulty communication between insurance companies, pharmacies, and endocrinologists.

“We are already thinking about our health — we don’t want to manipulate the system or have to be mean in order to get the things that keep us alive and keep us healthy.”

Success stories

Theresa Parsons told Beyond Type 1 that there is nothing more powerful than the story of a person living with Type 1. And those stories make all the difference when appealing insurance decisions or fighting to get the treatment you want. To find out how best to advocate for yourself and your loved ones, visit advocacyforaccess.com.

 



Katie Doyle

Katie Doyle is a writer and videographer who chronicles her travels and diabetes (mis)adventures from wherever she happens to be, and she’s active in the community as an IDF Young Leader in Diabetes. She’s written about dropping her meter off of a chairlift in the Alps, wearing her pump while teaching swim lessons on Cape Cod, and the many road trips and fishing expeditions in between—she’s up for anything and will tell you the story about it later. Check out www.kadoyle.com for more.