Our Advocacy Strategy

Alongside the hydrocephalus community, we advocate for policies, programs and agencies that help advance research into a cure for hydrocephalus and new treatment options, improve the lives of the over 1 million Americans living with hydrocephalus, and raise awareness about the condition. Our primary advocacy goal is to ensure that the federal government is investing adequate funds to accomplish the following:

  • To understand the breadth and depth of impact of hydrocephalus on our people;
  • To make funding hydrocephalus research for improved treatments and cures a priority;
  • To support those affected by hydrocephalus with appropriate programs.

These goals require targeted awareness campaigns to ensure that decision makers understand that hydrocephalus is a condition that affects a broad array of people, is not cured with the insertion of a shunt, and is a growing problem with significant burden on our people and the economy. To accomplish this, our advocacy strategy is focused on four key areas:

The Hydrocephalus Association will urge legislators to preserve and/or amend healthcare policies that:

  • Assure access to affordable health insurance coverage that will provide the care and services that our patients need to stay in good health through their entire lifespan, including individuals with pre-existing conditions.
  • Maintain the prohibition on annual and lifetime limits on health insurance.
  • Maintain out-of-pocket spending limits for patients.
  • Provide affordable health coverage options that enhance the value and control the cost of health insurance and insurance premium increases.
  • Enhance healthcare coverage for individuals with disabilities and economically disadvantaged families.
  • Maintain eligibility for individuals and children to remain on their parent’s insurance until the age of 26.

The Hydrocephalus Association will urge legislators to support educational policies that:

  • Increase and preserve investment in education at all levels for children and young adults with special needs, including preserving Part B of the Individuals with Disabilities Education Act (IDEA) that guarantees children with disabilities a free public education appropriate to their needs.
  • Oppose any initiatives that would reduce the existing educational rights of children with special needs under such bipartisan laws as the Every Student Succeeds Act (ESSA) and the Individuals with Disabilities Education Act (IDEA).
  • Preserve Early-Intervention and Head Start programs for at-risk infants and toddlers.
  • Oppose any change to existing federal law or regulations that would permit the expenditure of federal funds in any school or educational setting which fails to comply with federal education laws regarding children with special needs, or reduce the availability of funds that support Free Appropriate Public Education (FAPE) and special education services and programs that comply with federal educational laws, including ESSA and IDEA.

The Hydrocephalus Association will urge legislators to preserve and protect labor policies that:

  • Prohibit discrimination based on disability in the workforce, including accessibility and reasonable accommodations to employees with disabilities.
  • Preserve the Workforce Innovation and Opportunity Act and Americans with Disabilities Act to protect the employment rights of people with disabilities in the workforce.

The Hydrocephalus Association will urge legislators to develop research policies that:

  • Support increased funding for science and health research, including allocations that reflect the prevalence of hydrocephalus in the population.
  • Support hydrocephalus research as a condition to be tracked under the National Neurological Conditions Surveillance System.
  • Support the continued inclusion of Hydrocephalus as a condition eligible for funding through the CDMRP.
  • Support increased funding for NIH, NINDS, the BRAIN Initiative, and the Precision Medicine Initiative.

Advocacy Impact

Our advocacy achievements have come a long way. We started our advocacy efforts in the late 1990s, representing the patient community at a handful of federally-hosted events. In 2006, we hosted our first National Advocacy Day in Washington, DC, which galvanized HA to consider the formalization of an Advocacy program. In 2011, the HA Board formally included Advocacy as one of our four strategic pillars. Since our inception, we have achieved many steps in the federal advocacy space. See a timeline of the significant milestones of our work to advocate towards more awareness and public research funding for hydrocephalus.

Partnerships and Coalitions

The Hydrocephalus Association collaborates with various organizations and coalitions on policy issues that affect the hydrocephalus community. By partnering with other like-minded organizations, we can provide a stronger, unified voice on Capitol Hill.

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