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Ways to Advocate for Rare

Last year I talked to you about Rare Across America with two former participants, Drew Freedman and Leisa Greathouse. Now, we want to invite you to find something in rare disease you want to help push forward through law and advocate for it. This year’s Rare Across America is on August 7th – 18th.

On a regular basis we sign off on letters of support for various legislative changes. These almost always come through NORD or similar organizations. We champion these changes alongside a large group.

Rare Across America, a policy advocate event hosted by Everylife Foundation.

In August, EveryLife Foundation supports individuals to advocate locally in Rare Across America. These state specific issues can be addressed with local representatives and efforts making change for the better. I keep my eyes on these to see how we can work more strategically to impact the histio community. Below are some examples of that.

Newborn Screening 

For over 50 years, every newborn in the U.S. has been afforded the chance to be screened for a range of debilitating and deadly diseases. Texas, New York, Massachusetts, and Illinois are just a few of the states with legislation this year to enhance the newborn screening processes. To learn more about newborn screening legislation currently introduced in state legislatures, click here.

Out-Of-Pocket Medical Expenses

Sixteen states have prohibited health insurance companies from using harmful financial strategies that increase out-of-pocket expenses for patients. States like Oregon, South Carolina, and North Dakota have legislation introduced to restrict copay accumulator programs that leave patients with unexpected and unaffordable prescription drug costs. To learn more about out-of-pocket expense legislation currently introduced in state legislatures, click here.

Access to Physicians Across State Lines

The Interstate Medical Licensure Compact (IMLC) is an agreement among participating U.S. states to streamline the licensing process for physicians who want to practice in multiple states. The compact increases patient access to expert care in person and via telemedicine, which greatly benefits those in underserved or rural communities, individuals attempting to reach expert care from a distance, and patients with complex medical conditions who are unable to travel. To learn about current state efforts to streamline medical licensing and improve access to physicians – including efforts in Hawaii, Missouri, and North Carolina – click here.

Medicaid Drug Review Processes

DUR Boards and P&T Committees determine how each drug will be covered by Medicaid in each state. Current state efforts to increase expert and patient representation, transparency, and accessibility in Medicaid drug review meetings are taking place in Oregon and Minnesota. To learn more about these bills, click here.

Those are just a sample of the policies that you can advocate for during this Rare Across America. The policies may vary with each state, but the goal is the same: to make diagnosing and treating rare disease easier in the United States.

This year, Everylife Foundation is also hosting a virtual youth and teen advocacy day on June 22nd with virtual trainings starting June 4th.

If you are committed to participating in Rare Across America, or considering it, please fill out this survey so we can update the community with how many states are being represented during the event this August and help participants from our community create letters and overview sheets to share with their representatives.

Stay tuned to our socials as we will have more information about how to participate in Rare Across America as we receive it.