It’s a new year with new opportunities to make progress!
Okay, maybe you’re still in front of a cozy fire, eating through the holiday leftovers, and not QUITE ready to think about bill numbers and committee meetings. But legislative opening days are right around the corner, and we’re getting organized to make progress in our key areas of access, affordability and representation.
Read our one-page policy platform
Want a video version of this? Check our phone-friendly Chronic University
Access to Care
The Chronic Disease Coalition advocates for expanded access to comprehensive care and treatment options, ensuring that individuals facing long-term health challenges receive the support and resources they need, when they need it.
That means being able to get into your provider in a timely manner, including through telehealth. It also means getting access to the full range of treatments, including devices, prescriptions, nutrition advice or physical or occupational therapy.
“I have people who will talk to me where they have struggled to get access to a specialist for treatment because there is a lack of specialist in their area, especially those who live in rural areas,” said Patient Advisory Council member Curtis Warfield.
Specific legislation includes:
- Step therapy
- Nonmedical switching
- Prior authorization
- Living donor protections
- Medigap
- Upper payment limits
- Workforce improvements
- Telehealth access
- Transportation
- Mental health parity
“Being able to have access to both the people and the treatment mechanism that you need is absolutely necessary for patients to be able to live their best lives, but also for patients to have lower costs,” said Patient Advisory Council member Claire Sachs. “The more developed a disease gets, the more expensive it is, both for the insurance company and for the patient.”
Affordability for Patients
The Chronic Disease Coalition advocates for reducing patients’ cost through improved management of both rare and common chronic conditions. We also work to dismantle financial barriers to healthcare to ensure families don’t have to choose between paying rent and paying for treatment. We want to make sure that cost savings make it to the patient level, which is why we work on some of the hidden cost drivers in health care.
Specific legislation includes:
- Copay accumulator bans
- Third-party assistance
- Pharmacy Benefit Manager reform
- Alternative Funding Programs
- 340B programs
- Prescription Drug Affordability Boards
“One year, I ended up spending upwards of 15% of my pre tax income on health care,” said Sachs. “When I was choosing a career path, I was limited by the fact that I knew I was going to need to work for a company that was large enough to be able to absorb the cost of my diseases.”
Kidney donations allow people to get off dialysis and live healthy lives, but tragically, that is not the end of the story, according to Warfield. “We've seen it in the kidney community where people have received the kidney but are unable to afford the immunosuppressant drugs. [They] have lost the kidney and have had to go back on dialysis.”
These are choices that people simply should not have to make.
Representation
The Chronic Disease Coalition supports greater patient representation in regulatory and legislative processes, as well as greater consideration of how policies can affect different communities in different ways.
“It is important to have the voice of the patient represented in policy discussions. The patients live with their disease 24/7,” Warfield said. “We lived through the pain. We lived through the depression. We lived through the hopelessness of what's going on, so include us. Let our voices be heard.”
Specific legislation includes:
- Rare disease advisory councils
- Chronic kidney disease task forces
- Health equity
Advisory councils and task forces give patients a formal seat at the table, but that’s not the only kind of representation that matters. We need to collectively and actively ensure that all parts of our community are considered in healthcare policy making.
Staying Informed and Engaged
As we move into 2025, patient-centered advocacy is more important than ever. We need to have sincere, personal conversations, patient-to-legislator.
At the Coalition, we are working every day to make it easier for you to be a well-informed advocate. The more you tell your story, the more you help others as well.
We have a toolbox to help you, wherever you are and whatever time and energy you have to offer:
- Sign up for our newsletter: Twice a month, you’ll get our newsletter with about 5 quick items to know, be inspired by, or take action on. You’ll also get occasional updates about key legislation in your state.
- Follow us on social media: You’ll see a mix of patient stories, policy trends, and timely actions you can take in your state.
- Visit our website to see:
- Policy map: Which states are working on legislation in our key areas
- Contact your elected leaders: Use our easy forms to send a letter to your elected representatives. It’s a short list now, but as bills are introduced across the nation, the list will grow. We have suggested language to make it easy, but you’re also free to edit it and tell your own story.
- Chronic University: With the four, mobile device-friendly videos we made in 2024, you can see some basic and advanced tips for telling your story.