Medicaid Resources

This page includes draft policy information that is still in development. You are welcome to use these materials, but please keep in mind that they may be incomplete or subject to change.

We welcome suggestions and additional resources. To share materials or feedback, please contact anna@statezebranetwork.org  

Medicaid

Medicaid is a joint federal /state health insurance program that provides free or low-cost coverage to eligible low-income individuals, including children, adults, seniors, and people with disabilities. Current policy debates focus on proposals that could change eligibility, funding, or benefits, raising concerns about reduced coverage or access to care for vulnerable populations.

Party Pro / Cons and Concerns

Important Note: Remember, there are nuances that differentiate in each state. This material provides general information that can be adapted to truly align to your own state.

Democrat Party Pros
Arguments Supporting Proposed Medicaid Policy Changes
Democrat Party Pros
• Some reforms that expand benefits or increase federal funding can improve access to specialists, diagnostics, and rare disease treatments. • Opportunities to streamline enrollment, ensure continuous coverage, and reduce administrative hurdles for medically vulnerable patients. • Policies that strengthen Medicaid can help address disparities in diagnosis and care for rare diseases.
Democrat Party Cons/Concerns
Arguments Opposing or Cautioning Against Proposed Changes for Rare Disease Patients
Democrat Party Cons/Concerns
• Many proposed changes—like work requirements, eligibility restrictions, or funding caps—risk coverage losses for rare disease patients who depend on Medicaid for high-cost, lifelong care. • Concern that block grants or reduced federal funding could limit access to specialists, therapies, and diagnostic testing. • Worries that narrowing benefits increases inequities and disrupts treatment continuity.
Republican Party Pros
Arguments Supporting Proposed Medicaid Policy Changes
Republican Party Pros
• Greater state flexibility can allow innovative rare disease programs, targeted care coordination, and tailored benefits. • Cost-management efforts can encourage more efficient delivery of complex care and better oversight of specialty drugs. • Emphasis on fiscal sustainability may prompt long-term reforms that strengthen state-level program stability.
Republican Party Cons/Concerns
Arguments Opposing or Cautioning Against Proposed Changes for Rare Disease Patients
Republican Party Cons/Concerns
• Eligibility restrictions or funding caps may unintentionally reduce coverage for individuals with rare diseases who rely heavily on Medicaid. • Work requirements can be burdensome or unworkable for families and patients managing complex medical needs. • Concerns from constituents often highlight risks to continuity of care, access to specialists, and affordability of rare disease treatments.
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Medicaid patient
From the Patient Perspective

Medicaid is a lifeline because it often provides the only affordable access to specialists, diagnostic testing, complex treatments, and lifelong care for rare diseases. Families rely on Medicaid’s coverage stability and protections, especially for children with significant medical needs. At the same time, patients worry about policies that could tighten eligibility, reduce benefits, or create administrative barriers that interrupt treatment. They also fear long wait times for specialists, limited access to certain therapies, and the strain on state budgets that can affect the consistency and quality of care.

Talking Points to Protect Medicaid Eligibility, Benefits, and Stability
  • Oppose eligibility cuts, work requirements, or administrative barriers that could interrupt care.
  • Ensure continued coverage of genetic testing, rare disease specialists, and high-cost therapies.
  • Safeguard access to gene therapy and advanced treatments under changing federal funding models.
  • Strengthen care coordination, transportation, and long-term services.
  • Guarantee continuity of care during any federal or state transition.

 

Policy Guidelines
  1. Safeguard eligibility from proposed cuts or restrictions.
    Given current proposals that could narrow who qualifies for Medicaid, policies must protect children and adults with rare diseases who depend on continuous coverage to access lifesaving treatments.
  1. Oppose changes that shift Medicaid to block grants or spending caps.
    Rare disease care is unpredictable and often extremely expensive; capped or fixed funding models risk forcing states to cut services, restrict access, or deny coverage altogether.
  1. Protect comprehensive benefits from reductions.
    Some proposals could limit coverage for genetic testing, home care, habilitative services, or specialty care. Policies should ensure these medically necessary benefits remain fully covered.
  1. Prevent work requirements or administrative barriers that threaten coverage.
    Families managing complex medical needs often cannot meet such requirements; losing coverage due to paperwork or reporting hurdles would have life-threatening consequences.
  1. Strengthen reimbursement to avoid cuts that limit access.
    If federal funding is reduced, states may lower rates, shrinking networks and worsening specialist shortages—especially harmful for rare disease patients who require highly skilled providers.
  1. Maintain strong coverage for high-cost therapies, including gene therapy.
    Any policy change that reduces federal support could make states reluctant to cover advanced therapies; guidelines should ensure continued access regardless of price pressure.
  1. Ensure continuity of care during any transition.
    If eligibility, plan structures, or funding models change, rare disease patients must be protected from treatment interruptions, medication lapses, and loss of established specialists.
  1. Guarantee follow-up services after NBS and genetic testing.
    Policy changes must preserve Medicaid’s role in covering confirmatory testing, specialty care, and long-term treatment after newborn screening or genetic testing results.
  1. Protect patient rights during budget-driven reforms.
    Families worry that cost-cutting proposals will prioritize savings over health outcomes; policies should include safeguards to prevent denial of medically necessary care.
  1. Center patient voices when evaluating proposed Medicaid changes.
    Given the magnitude of potential reforms, rare disease patients and caregivers must be represented in decision-making to ensure policies do not inadvertently harm the medically fragile. Parents, patients, and rare disease advocates should have formal roles in advisory councils, implementation planning, and review processes. This includes areas like DUR Boards and P&T Committee meetings where rare treatments are being reviewed to design clinical criteria for coverage and reimbursement and placement on preferred drug lists.
Additional Resources

Organizations and leaders who have policy experience in this area

1-Pagers
Videos & Podcasts