Director, Access Policy
The Director will be able to lead efforts on conceiving, enacting, and supporting the implementation of public policy proposals that expand access to care for the neuromuscular disease community. This individual will be responsible for working with colleagues across MDAs departments to ensure that all applicable access to care efforts align with the organizations advocacy priorities. The Director will chiefly focus on policies pertaining to access to diagnostics, treatments, and care, and will be required to represent MDA in multiple functions including, but not limited to, coalition efforts, meetings with policy makers, and other engagements to promote MDAs work to increase access to diagnostics, treatments, and care for the neuromuscular community.
- Oversee the development and execution of public policies focused on access to diagnostics, treatments, and care in consultation with Public Policy and Advocacy Department leadership and colleagues.
- Inform the content of all outgoing advocacy communications pertaining to access to care and collaborate closely with Advocacy Engagement staff members and MDAs internal communications department.
- Craft innovative public policy interventions to increase access to care for the entire neuromuscular disease community.
- Analyze proposed public policies pertaining to access to care and evaluate the potential effect they may have on the neuromuscular disease community.
- Proactively evaluate how existing and proposed access to care policies can better address structural racial and socioeconomic inequities within the neuromuscular disease community.
- Collaborate with Advocacy Engagement staff to ensure all MDA website and social media materials pertaining to access to care public policy is current and well-presented.
- Lobby Congress in support of, or opposition to, legislation that will impact the neuromuscular disease community.
- Collaborate with Advocacy team on yearly events, including Lobby Days.
- Direct public policy and advocacy efforts in the following policy areas:
- Access to diagnostics (newborn screening, genetic testing and next generation sequencing, inclusion of diagnostics within public and private payer insurance designs, and more)
- Access to treatments (formulary designs, specialty tiers, co-insurance and co-pays, specialty tiers, Medicare Part D, and more)
- Access to care (Affordable Care Act-related policies, access to Medicare and Medicaid, federal regulatory approaches to Medicare and Medicaid, and more).
- Track, evaluate, and prepare regular reports around access to care policy and advocacy efforts in which MDA is engaged or monitoring to MDA staff and partners as required.
- Represent MDA at meetings, symposia, Congressional hearings, and other events as requested.
- Represent MDA in relevant coalitions pertaining to access to care, including on newborn screening, access to quality health insurance, access to Medicare, and more.
- Work closely with MDAs research, communications, marketing, care center, and other departments on an ongoing basis.
- Participate in speaking engagements and on panel opportunities as requested.
- Participate in MDA training, educational activities, and events.
- Forge collaborations with likeminded advocacy organizations to expand the reach of MDAs advocacy efforts
- Perform other related duties as required and assigned.
- Bachelors degree required, with a minimum of 5 years of public policy and advocacy, or relevant, experience at the national level.
- At least two years experience working on public policies pertaining to access to diagnostics, treatments, and care required.
- Capitol Hill, federal agency, or similar non-profit experience strongly preferred.
- Ability to analyze proposed public policies and their potential impact on the neuromuscular disease community.
- Ability to synthesize complex information and communicate in an accessible format.
- Ability to coordinate with multiple stakeholders.
- Ability to direct multiple high-level tasks and initiatives in a fast-paced environment.
- Ability to work closely and compassionately with volunteer advocates from the neuromuscular disease community
- Strong written and verbal communication skills.
- Strong computer skills, including Microsoft Office, and ability to use (or learn) advocacy software platforms and patient management platforms.
- Ability to communicate complex policy scenarios and the implications for the neuromuscular disease community.
- Ability to communicate in a consistent, proactive, and inclusive manner.
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Job posted: 2021-10-13