What Matters? – Policy Issues & Legislation

There is always new legislation being proposed at both the federal, state and local levels that is relevant for patients and families living with all types of disorders.  We will do our best to give you the best information on at least a yearly basis, but policy changes fast… things may have changed by the time you finish this sentence!  So, be sure to stay up-to-date on legislation that is specifically relevant to you and your family.

To try and keep things manageable, we do our best to set policy priorities every year that benefit families impacted by Chiari, syringomyelia and related disorders.

Below are just some of the policy areas that you can choose for your advocacy efforts over the next year.  If any of the following policy areas or specific pieces of legislation have particular meaning to you, feel free to include them in your advocacy! Have questions about how to do that? Contact Kaitlyn.

The only way to ensure a better future is to continue funding critical research agencies like the National Institutes of Health, AHRQ, CDC and others, which use those dollars to fund groundbreaking studies that better understand and treat these disorders.  You can find a list of previously or currently funded federal research by visiting ClinicalTrials.gov and searching for your specific disease of interest.

Specifically, we urge elected officials to support legislation that will:

• Maintain or increase funding available for NIH/NINDS, CDC and initiatives such as the Precision Medicine Initiative that fund large-scale research in neurosurgical disorders
• Maintain or increase funding for fellowship/educational grants for physician-scientists in training
• Support larger and more innovative studies, capable of implementing new technologies like AI to speed up breakthroughs
• Support Chiari malformation, syringomyelia and related disorders like Ehlers-Danlos syndrome to be included as conditions eligible for funding through the CDMRP

We fully support the development of a health care system that best serves patients and the clinicians who treat them.  We support legislation that:

• Ensures equitable access to medical imaging and clinical interventions and supports clinical research that assists in minimizing access gaps
• Ensures equitable access to insurance coverage and maintains appropriate out-of-pocket spending limits for families
• Maintains or increases coverage for families living with disabilities or socioeconomic disadvantages
• Continue to allow children to remain on a parent’s insurance until the age of 26, regardless of clinical diagnoses
• Encourages appropriate education of clinical professionals and the establishment of evidence-based guidelines for care

The ability to work, live and play is critical to living a fulfilling life– and a diagnosis of any sort should not change that.  For that reason, we also urge legislators to pass laws that:

• Protects the rights of individuals living with these disorders in school and the workplace, including against discrimination
• Enforces and expands accessibility standards
• Encourage more research specific to families living with these disorders to better understand the social determinants that modulate long-term health outcomes, including the built environment and existing disparities/inequities that impact access to high-quality care

• Level of Government: Federal / National
• Introduced By: Sen. Casey (D-PA), Sen. Blackburn (R-TN), Sen. Kaine (D-VA), and Sen. Cramer (R-ND)
• House Version? Yes:  Advancing Research for Chronic Pain Act of 2024 (H.R. 7164)
• Bipartisan support
• About: This bill aims to enhance research and data collection on chronic pain, but it must be passed by both the House and Senate in identical form and then signed by the President to become law
• More Info: Click here for details and the most current status of this bill

• Level of Government: Federal / National
• Introduced By: Sen. Baldwin (D-WI) and Sen. Cassidy (R-LA)
• Bipartisan support
• About: This bill seeks to address issues raised by a 2021 court decision regarding orphan drug exclusivity. The act aims to ensure the FDA’s longstanding interpretation of the Orphan Drug Act of 1983 is maintained. Specifically, it seeks to make sure that orphan drug exclusivity applies only to the same approved use or indication within a rare disease or condition, rather than to the entire disease or condition. This change is meant to prevent the misuse of orphan drug designations and to facilitate the approval of the same drug by different manufacturers for different patient populations[2]
• More Info: Click here for details and the most current status of this bill

Revised: 6/2024