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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 supporting the HELP Copays Act, one CDC ambassador's experience testifying at the Maryland legislature, reforms to the prior authorization process, and more in our bi-weekly legislative update.

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Photo featured in KFF Health News article by Julie Appleby.

1. Learn aboutcopay accumulator programs and their real impacts on real families.Working families have insurance to protect them from medical costs, and when the diseases are serious and complex (such as the cystic fibrosis affected family in this story), drug manufacturers and nonprofits often step in to cover the cost of the copay. But what happens when the insurance company takes the copay assistance and still charges the family? Read the Kaiser Family Foundation story here, and take action on our website.

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2. Longtime CDC Ambassador Claire Sachs, who manages more than a dozen chronic diseases, spent nearly eight hours in her state capitol to testify on a pharmacy benefit management reform bill with the Maryland legislature. After her hours-long wait, she spoke for 90 seconds. While Claire was able to be there in person, the MD legislature is among many states still accepting virtual testimony — but without this option, too many chronic disease patient voices could not be heard at all. Read about Claire’s experience with PBMs here and see the latest at the federal level.

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3. In more Maryland news, the state’s Prescription Drug Affordability Board is looking to address the cost of some chronic disease treatments during a meeting this month. While PDABs are charged with making policy recommendations to make treatment more affordable, they often take an oversimplified approach to the process — and don’t always consider the indirect impacts that their decisions could have on patients and their families. Read our PDAB blog here.

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Photo of Sandra Johnson who was responding well to an injectable drug to treat her persistent asthma, but then her insurance company stopped allowing her to get it in a process called "prior authorization." Photo credit: Kimberly Paynter/WHYY, as featured in the NPR article by Alan Yu"

4. New Jersey is the latest state to propose reforms to the prior authorization process. While it’s important for insurance companies to maintain oversight of the treatments that doctors are prescribing, nothing should come between a patient and their provider. NPR profiles a patient that has experienced severe health impacts due to prior authorization — and what the Legislature hopes to do about it. Read more here.

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5. Last week was National LGBTQ+ Health Awareness Week and we partnered with our friends at Global Healthy Living Foundation (GHLF) on their brief, 10-minute survey for LGBTQ+ people living with Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis! There is still time to take the survey - your insights are invaluable for helping us and our friends at GHLF continue to advocate for better health care solutions for you and others like you and work toward equitable health outcomes for all. Let’s work together to bring light to the unique challenges you face. Take the survey!