340B Resources

340B Cover

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  

Resource Topic Title

The 340B program requires drug manufacturers to sell outpatient drugs at discounted prices to eligible hospitals and clinics that serve large numbers of low-income or uninsured patients. The program does not specify how participating hospitals must use the savings.

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 340B Program
Democrat Party Pros
340B helps safety-net hospitals stretch resources to serve low-income and uninsured patients, including some with rare diseases. Supports maintaining or strengthening 340B to improve access to care in underserved communities. Emphasizes the program’s role in supporting hospitals that provide complex, high-cost services.
Democrat Party Cons/Concerns
Arguments Raising Caution for Rare Disease Patients
Democrat Party Cons/Concerns
* Concern that savings generated through 340B are not always directed toward rare disease services or patients. * Worries that lack of transparency may hide uneven benefits for patients needing expensive specialty drugs. * Some fear that expanding 340B without oversight may allow misuse that doesn’t improve rare disease access.
Republican Party Pros
Arguments Supporting 340B Program
Republican Party Pros
* Supports 340B when it helps rural hospitals, critical access facilities, and community clinics remain financially stable. * Emphasizes state flexibility and minimizing federal intervention in program operations. * Appreciates that 340B can help offset uncompensated care in small markets
Republican Party Cons/Concerns
Arguments Raising Caution for Rare Disease Patients
Republican Party Cons/Concerns
* Concerns that the program has grown beyond its original intent and may distort drug pricing, impacting innovation for rare disease treatments. * Skepticism about hospitals using 340B discounts without passing savings to patients, especially those facing high out-of-pocket costs for rare therapies. * Calls for stronger oversight and guardrails to prevent misuse or excessive program expansion
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340B-patient-prospective
From the Patient Perspective

The 340B program can be valuable when it helps hospitals keep services available and support access to specialists needed for rare diseases. But many families worry that the discounts aren’t always passed on to patients and don’t reliably lower out-of-pocket costs for high-priced rare disease treatments. Patients also fear that uneven oversight means some hospitals benefit financially without improving access to the complex care, diagnostics, or medications that rare disease patients depend on, leaving them unsure whether the program truly helps them.

Talking Points
  • Require 340B savings to support patient services, diagnostics, and specialty care.
  • Improve transparency around how savings are used without reducing program participation.
  • Protect access to infusion centers and specialty drugs when federal rules shift.
  • Maintain contract pharmacy access for rare disease therapies with proper safeguards.
  • Ensure continuity of care during any federal or state changes to the program.

 

Policy Guidelines
  1. Ensure timely and equitable access across all states.
    States should regularly update their screening panels to match federal recommendations and emerging evidence, ensuring every baby—regardless of geography—has access to the same lifesaving tests.
  2. Provide sustainable funding for state labs and follow-up systems.
    Modern, well-resourced labs are essential. Funding should support equipment upgrades, staffing, rapid result turnaround, and quality improvement.
  3. Strengthen follow-up care and care coordination.
    Screening is only meaningful if followed by timely confirmatory testing, specialist access, genetic counseling, and treatment. Policies should ensure families can navigate this quickly and affordably.
  4. Support integration of advanced technology (e.g., genomic sequencing where appropriate).
    Policies should encourage responsible, evidence-based adoption of new technologies that improve detection of rare conditions, while ensuring ethical standards and feasibility.
  5. Protect patient privacy and data security.
    Guidelines should clearly define storage, use, and disposal of dried blood spots and genetic data, balancing public health benefits with parental consent and privacy safeguards.
  6. Invest in workforce development.
    Support training for lab personnel, genetic counselors, and rare-disease specialists to handle increased testing volume and follow-up demands.
  7. Promote transparency and accountability.
    States should publicly report screening metrics (turnaround time, follow-up rates, outcomes) and engage families in evaluating program effectiveness.
  8. Center patient and family voices in policymaking.
    Parents, patients, and rare disease advocates should have formal roles in advisory councils, implementation planning, and review processes.
  9. Encourage federal–state collaboration.
    Policies should support coordinated funding, research, and consistent standards across states, reducing gaps and delays in adding new conditions.
  10. Ensure equitable coverage of treatment and diagnostic follow-up.
    Screening without access to treatment is insufficient; policies must ensure Medicaid and private insurance cover needed follow-up testing, medications, and long-term care.



Additional Resources

Organizations and leaders who have policy experience in this area

1-Pagers
Videos & Podcasts