As we transition into fall, the push for equitable healthcare access is stronger than ever!
In this edition, we highlight key advocacy opportunities, including a call to action on the Mental Health Parity Rule and the latest developments in rare disease legislation in California.
You’ll also find helpful resources from the Human Growth Foundation for National Growth Awareness Week, as well as timely updates on Medicare changes for the rare disease community ahead of Open Enrollment. We’re also excited to feature Darcy Bonjour, one of our dedicated CDC Ambassadors, as she shares her inspiring advocacy journey.
Whether you’re new to advocacy or a seasoned advocate, this newsletter has the tools and stories you need to inspire and strengthen your efforts!
1. Call to Action: Strengthening Mental Health Parity
Access to mental health care is crucial for chronic disease patients. In our recent nationwide poll, 60% of respondents with chronic conditions report they feel stressed and 50% said it negatively impacts their mental health. Show your support for better access to mental health care by emailing your members of Congress, the Departments of Health and Human Services (HHS) and Labor (DOL). Take action now.
2. Children's Growth Awareness Week: Helpful Resources
September 15–21 is National Growth Awareness Week, a time to recognize the strength of children and adults living with growth disorders. Our partners at the Human Growth Foundation work to improve research, provide education, and ensure care for those affected. They’ve also put together a helpful list of resources for advocates to learn more about different growth disorders. Learn more here.
3. RDAC Bill Moves to California Governor's Desk
A new bill to create a Rare Disease Advisory Council (RDAC) has passed the California Legislature and is waiting for Governor Newsom’s signature. The council will give patients and caregivers a voice to improve care for rare diseases, which affect about 10% of Californians. Read more about this important legislation and its potential impact here.
4. Changes to Medicare for 2025 and Beyond
Our partners at the National Organization for Rare Disorders (NORD) have important news for the rare disease community about Medicare changes starting in 2025. Thanks to the Inflation Reduction Act (IRA), Medicare will now cap out-of-pocket prescription drug costs at $2,000 a year. You can also spread payments out in monthly installments. During Medicare Open Enrollment (October 15 - December 7), be sure to check if your medications are covered. Learn more about these changes here.
5. CDC Ambassador Spotlight – Darcy Bonjour
Image courtesy: Darcy Bonjour
CDC Ambassadors work hard to be actively involved in creating local, state and national change to protect chronic disease patient rights. In acknowledgement of our fantastic ambassadors, we’d like to highlight CDC Ambassador Darcy Bonjour, from Kansas -
“I advocate because I want to encourage others in their everyday life and help them seek good healthcare... After I stopped working, it was quite isolating to suddenly be deaf, sick and unable to go back to a job I loved. In time I became involved in online pain groups. I began to help by encouraging others to advocate for their healthcare and I tried to provide inspiration for their daily life. It began to help me and gave me purpose by reaching out to others and helping them. It was fun and exciting and I never looked back.”
If you’re interested in joining Darcy in our Ambassador program, click here.