Last week, we sent our legislative priorities to more than 7,000 legislators across the country. Law makers receive a lot of information from national advocacy groups like the Chronic Disease Coalition, so it’s understandable that they can’t respond to everything.
Knowing this only made the responses we did get more meaningful. Legislators shared that they have chronic diseases themselves, or that they have children who manage chronic diseases. There were multiple acknowledgements of the importance of our goals of access, affordability and representation. Many staff members also took the time to connect directly and share the priorities of their legislators, including bills to:
- Support sickle cell education
- Invest in research related to long COVID
- Develop appropriate Medicaid work requirements.
The #1 Response From Legislators About Our Agenda
The number one response from legislators, across state and party lines, goes something like this:
“Thank you for reaching out. Due to the volume of letters we receive, we prioritize emails from residents of our district.”
In other words, they really want to hear from you—the people who live in their community. The good news is that we’ve made it easy. Just click the link below, fill out the form and hit “submit.” We take care of the rest, including ensuring that your letter only goes to your representatives. This is a GREAT first step to advocacy: It’s easy and personal.
What We’re Advocating For
As we shared with the legislators, this year’s policy priorities reflect what patients consistently tell us: health coverage must be stable, services must be high-value and cost-efficient, and when savings are possible, it should be patients who directly benefit.
People want to remain healthy, working, and engaged in their communities, and they need:
- Sensible work and eligibility requirements for Medicaid. More than a third of Americans manage a chronic disease, and they want to work and participate fully in their communities. We encourage states to recognize those who are disabled or medically fragile, and prioritize access to the basic healthcare services that make independence possible.
- Access to treatment. We know how to keep people healthy and reduce system-level costs: primary care, care coordination, preventive care such as cancer screenings, simplification of prior authorization requirements, and access to telehealth and home-based care are just a few examples of services that save everyone money and keep people healthy.
- Affordability should be at the patient level. Pharmacy Benefit Managers (PBMs) shouldn’t take discounts meant for patients, all copays should count and third-party assistance programs should benefit people at the pharmacy counter.
- Representation means including patient perspective in healthcare policymaking. Chronic kidney disease task forces and rare disease advisory councils are just a couple ways states can ensure they’re making policy that will have the intended effect.
Your Voice Matters the Most
The legislators’ response doesn’t hurt our feelings—far from it! The Chronic Disease Coalition’s mission is to advocate on behalf of patients and to help them advocate for themselves. How do we do that?
- Patient-centered policy development. We track the issues and listen to patients so we can develop an advocacy agenda that is grounded in the patient experience
- Public education materials. We want people to understand the issues that their elected officials are voting on. Check out our issues page for easy-to-read one-pagers on the biggest issues.
- An easy email platform. Our “Contact Your Elected Leaders” page makes it easy for you to send a letter directly to your elected officials, and only yours. You can also add your personal story or change the content of the letter.
- Advocacy toolkit. Have you mastered the letter and now you’re interested in meetings, testimony and social media? Check out our Advocacy Toolkit.
- Join us as an ambassador! Coalition ambassadors are actively involved in advocating for improved healthcare policy for all chronic disease patients. While you don’t have to be an ambassador to take action with the Coalition, ambassadors get other opportunities. Join now!