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Twice a month, we share quick advocacy tips and insights that you can use right away to become a better chronic advocate. This week, learn about the Chronic Care Policy Alliance Forecast, Prescription Drug Affordability Boards, and more in our bi-weekly legislative update.


1. CDC Director of Advocacy, Nathaniel Brown, recently participated in the Chronic Care Policy Alliance Forecast in Dallas, Texas.

We heard compelling stories about sickle cell advocacy and the power of collective action in driving change, as well as a new initiative aimed at advocating for patients struggling with obesity by shifting the narrative and promoting evidence-based interventions. Additional discussions included Inflation Reduction Act tweaks, passing the HELP Copays Act and the Safe Step Act, federal PBM reform, and updates on copay accumulator lawsuits.

The event fostered collaboration and renewed commitment to advocating for a more equitable healthcare system. Thank you to the Chronic Care Policy Alliance team for organizing this impactful event. Read Nathaniel's recap here.

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Left: Photo of Anna Williams, Dr. Patricia Olson, Crystal Bonnes, and Timm Bonnes, who were the four advocates chosen by the Alliance for Headache Advocacy to go to Washington D.C. to speak with legislators. Right: Photo of Anna Williams. Photo Credit: Anna Williams

2. CDC Ambassador Anna Williams, from Indiana, recently joined 275 advocates in Washington D.C. to champion the rights of those affected by headache disorders and migraines through an event organized by our partners at the Alliance for Headache Advocacy — alongside many other amazing organizations.

Alongside fellow advocates, Williams engaged with legislators to advocate for crucial bills such as the Safe Step Act and the NIH Clinical Trial Diversity Act. These bills aim to enhance transparency for insurance companies and promote diversity in clinical trials.

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3. Christina Thielst, a CDC Ambassador in Nevada, published a letter to the editor of the Reno News & Review that called for patients and caregivers to take a survey that is trying to capture more information about diagnostic journeys and other challenges related specifically to living with a rare disease. Results from the survey will inform local providers.

In addition to her work as a CDC Ambassador, Christina serves on Nevada’s Rare Disease Advisory Council. Take the survey here if you live in the Silver State.

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4. As we dive into April, take action for National Donate Life Month!

Take just 30 seconds to email your federal elected officials advocating for the Living Donor Protection Act, which offers job security, insurance coverage, and other protections to living organ donors.

Meanwhile, our coalition is actively engaged in advocacy efforts across various states, from Ohio to California and Iowa. Explore our ongoing initiatives, including bans on copay accumulator programs and reforms to prior authorization protocols in our blog.

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5. Members of the Oregon Prescription Drug Affordability Board (PDAB) are traveling around the state this month hoping to hear from communities about barriers to prescription affordability.

The Lund Report, a health-focused news outlet, covered this issue and quoted a letter from CDC Director of Advocacy Nathaniel Brown in highlighting some concerns patient advocacy groups have with the oversimplified approach to controlling the cost of treatment.

Meanwhile, Virginia Gov. Youngkin vetoed legislation this week that would have established a PDAB in the commonwealth. There is active legislation in several other states, including Connecticut, Vermont, Nebraska, and Illinois, that would set up PDABs. Read about our approach to PDABs here.