The newly formed Legislative Advocacy Advisory Council is working to define legislative priorities, because we want to focus on what’s most important to our community. Earlier this year, CMD community members were asked to complete a survey about what issues are most important to them. The information received from the survey will help the Council decide what proposed legislation to support now and in the future.
From a list of issues, respondents said that the financial burden of care is most important to be addressed legislatively. Close behind were accessible air travel, access to Medicare/Medicaid, the ease of treatment development and approval. The full list, as ranked by survey respondents, is:
Financial burden of care
Accessible air travel
Access to Medicaid/Medicare
Ease of treatment development and approval
Federal funding for research
Access to genetic testing
Access to employment
Telehealth
Interstate healthcare access
Social Security/Disability benefit reform
Some of these issues have pending legislation at the US federal level. Learn more about the bills and how you can encourage Members of Congress to support them on the Cure CMD advocacy page.
The survey also asked what other issues you would like to see addressed legislatively. Suggestions included:
Access to benefits while being employed
Adequate training for paid caregivers
Access to equipment
Public school accommodations
Medicaid income limits
Senior care for affected individuals
Marriage equality for affected individuals
Thank you to everyone who took the time to complete the survey. Your voice matters! The Advocacy Advisory Council will keep this data in mind as plans for future advocacy work are mapped out.
Please reach out to the Advocacy Advisory Council to share your ideas by completing the advocacy inquiry form.
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