Get Involved with Access Advocacy
Editor’s Note: High quality, modern insulin must be available to people with diabetes regardless of employment or insurance status, across all demographics, without barriers and at an affordable and predictable price point. If you or a loved one are struggling to afford or access insulin, click here.
Everyone impacted by diabetes—type 1, type 2 and beyond—has a right to the best care possible for their unique situation. This means access to the technology, medications, support and clinical care teams that help each individual manage their chronic condition. Beyond Type 1’s advocacy division works to increase access and remove barriers, giving our community the tools needed to succeed. Our advocacy work focuses on equity: making sure people with diabetes have access to care by tackling issues like systemic racism, financial privilege and discrimination in all its forms.
As we and other organizations work on access issues at a global and national systemic level, there are many actions each person in the US can take to lend their voice, add pressure and make the fight for diabetes care access louder and more equitable. Only with the voices and approaches of many can we succeed. Keep reading for tools to get started with personal advocacy.
Get Involved on the Federal Level
Beyond Type 1‘s advocacy division keeps major federal actions up to date on our advocacy platform; use our grassroots platform to find your local representatives and send them a message on current legislation in action.
The American Diabetes Association‘s (ADA) advocacy platform also scores new bills coming out of Washington to make it easy to understand how they will impact Americans living with diabetes.
With any federal actions, your voice matters more than you may realize. Legislators creating possible actions use your personal stories to make the case for new legislation; personal stories of how these laws could impact you hold sway.
Get Involved with State-by-State Efforts
While federal actions get more attention, much of the real impactful change happens on a state level through budgets and bills. States also often act as a proving ground for what could become federal legislation in the future. State attorney generals have the power to bring lawsuits against companies (like those in the healthcare industry) that they feel are acting unlawfully against consumer interests, state senators and representatives have the power to create laws regulating drug costs and health insurance structure, and more. That’s why it’s just as important to let our state representatives know how their decisions can impact our daily diabetes management.
Beyond Type 1‘s advocacy division actively monitors state insulin price capping bills as we believe that, while insulin price capping bills have limitations, even helping a few community members with out-of-pocket costs is one step closer to ensuring all people with diabetes in the United Sates have affordable access to insulin. If you’re interested in learning more about a particular bill and where it stands in the state’s legislative process, use our advocacy platform.
The Diabetes Patient Advocacy Coalition (DPAC) also maintains a current list of the most promising state actions impacting people with diabetes, including built-in tools that make it easy to contact your state lawmakers. Get involved locally to make a meaningful difference.
Lend Your Voice to Insulin Access
The list price of insulin has risen steeply over time, with the greatest increase over the last fifteen years. In the late-90s, one vial of analog (modern) insulin cost about $25-40 per vial, without insurance. By 2005, this had doubled to about $80, then started sharply increasing—about $125 by 2010, $260 in 2015, and—depending on the type of insulin—up to $275 and sometimes as much as $500 or more for long-acting analog insulins. Beyond Type 1 has extensively covered insulin access issues in the US and you can learn more about how insulin pricing works here.
Editor’s Note: People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin, click here to create your insulin access action plan.
Several non-profit organizations have specific advocacy actions you can take:
Beyond Type 1‘s advocacy division is closely following potential federal and state-based legislation aimed at regulating pharmacy benefit managers’ (PBMs) role in the insulin pricing crisis, capping insulin co-pays for certain types of health insurance and general drug pricing regulation. Reach out to your local representatives using our grassroots advocacy platform to share how possible insulin pricing legislation would impact your life.
T1International is a non-profit that fights for global insulin access by sharing information and raising awareness on insulin access issues and campaigning around both general and key action items related to insulin access. Stay in the know for local events and volunteer opportunities, including emerging state chapters.
Sign the American Diabetes Association‘s (ADA) Stand Up for Affordable Insulin petition—add your name alongside fellow advocates calling for access to affordable insulin in the USA.
Protect Preexisting Condition Coverage
Before the Affordable Care Act became law in 2010, people with preexisting conditions, including diabetes, could be denied access to health insurance. This protection provided by the ACA has been challenged legally multiple times, but so far has been upheld. To help ensure this continues, sign JDRF’s #Coverage2Control Petition to tell Congress to defend health insurance protections for people with preexisting conditions.
Ongoing sharing of the importance of healthcare coverage for those with preexisting conditions is helpful to keep the issue top of mind. Contact your federal representatives directly. Find out who represents you here, and give them a call to let them know how important ongoing federal protection guaranteeing insurance coverage for preexisting conditions is for people with diabetes.
Other Ways to Lend Your Voice
For federal research funding: every few years, JDRF leads the way in advocating for renewal of the Special Diabetes Program (SDP), $150 million annually in federal diabetes research funding that has paved the way for numerous research advances since it began in 1997. Sign up to be a JDRF advocate to get notifications for when it’s time to lend your voice to SDP renewal.
In the workplace: if you feel your employer-provided insurance coverage is inadequate for people with diabetes, take it to HR and ask your employer to make insulin exempt from your health insurance deductible. The Affordable Insulin Project has created a free guide to taking action at your workplace. You can also lend your voice to JDRF’s #Coverage2Control campaign, which advocates not only to insurers, pharmaceutical companies and governments for affordable access to diabetes care, technology and medication, but also works directly with employers to get better diabetes coverage under their healthcare plans
In Washington, D.C.: every other year, JDRF leads a group of child advocates to lend their voice in person in Washington, D.C. You can learn more about Children’s Congress here. If you or someone you know would like to become a Children’s Congress advocate, contact your local JDRF chapter.
To learn more about Beyond Type 1’s advocacy efforts, click here.