Advocacy & Policy

Making your voice count.

Anyone living with rare or chronic health conditions deserves seamless access to care. Healthcare expenses have become so great that just having health insurance isn’t enough. Families simply cannot afford the copays or cost sharing required to even go to the doctor. Our goal is to protect and expand healthcare access for people, with or without health insurance.

The government, particularly your elected officials, play a crucial role shaping and modernizing healthcare policy. Decisions made in Washington impact global efforts such as the pace of medical research and treatment development, along with issues that hit closer to home including coverage, access, and out-of-pocket costs. Sharing your story and making sure lawmakers understand the unique challenges and opportunities facing you and your family is critical for individuals impacted by rare, chronic, and or costly medical conditions. Every healthcare journey is unique and one size-fits-all-solutions often overlook important considerations.

Check back often as we’ll keep this page fresh with policy updates on timely issues impacting the community and information on how you can take action or sign up to receive updates. You do not have to be personally impacted to be a strong advocate, you just need to have the courage to share your perspective and the commitment to ask for change.

Guiding Advocacy Efforts

Key Priorities

Elevate the Patient Experience in Federal Policymaking

  • Inform Members of Congress and federal agencies about the real-world financial and administrative burdens facing patients with rare, chronic, and complex conditions.
  • Provide data and patient-informed insights to shape policies that reduce delays in care, insurance barriers, and out-of-pocket costs.
  • Ensure that the voices of rare and chronic disease communities are reflected in legislative and regulatory decision-making.

Advance Bipartisan Reforms That Improve Access and Affordability

  • Support policies that reduce insurance red tape, including step therapy and prior authorization reforms.
  • Promote prescription drug pricing transparency and accountability to lower patient costs.
  • Expand access to innovative treatments, home-based care, and cross-state specialty care for vulnerable populations.
  • Address disparities by strengthening rural health infrastructure and targeting social drivers of health.

Strengthen and Sustain Federal Health Programs

  • Advocate for robust funding for biomedical research, chronic disease prevention, and public health infrastructure.
  • Support responsible reform of programs such as 340B and Medicare Advantage to ensure patient-centered outcomes.
  • Protect and enhance federal initiatives that serve rare disease, bleeding disorder, and medically complex patient communities.

Issues

  • This bill helps Medicare patients access innovative medical devices more quickly. When the FDA identifies a device as a “breakthrough,” this legislation creates a faster, temporary Medicare coverage pathway while a full coverage decision is being finalized.

    Why we support it:
    Patients should not have to wait years to benefit from life-changing innovations. This bill ensures that seniors and people with disabilities can access cutting-edge technologies sooner, especially when no other effective options exist.

     

  • This bill ensures that copay assistance provided by nonprofits, manufacturers, or other third parties counts toward a patient’s deductible and out-of-pocket maximum. It addresses the growing use of “copay accumulator” and “copay maximizer” programs, which prevent this assistance from being applied to a patient’s overall costs.

    • This would bring much-needed relief to vulnerable patients by ensuring that all payments— whether they come directly out of a patient’s pocket or with the help of copay assistance—counts towards their out-of-pocket costs.
    • The bill eliminates barriers to treatment for patients ensuring that they can afford the necessary and life-saving medications prescribed by their doctors.
    • Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements.

    Why we support it:
    Copay assistance is often essential for patients who rely on high-cost medications. Without this protection, patients can face unexpected and unaffordable costs once assistance runs out. This bill helps ensure that financial support actually reduces what patients pay and improves access to needed treatments.

  • This bill will lead to increased access to health care services and preventive screenings, improved chronic disease management and health outcomes, expanded telehealth services, and reduced emergency department visits for the nearly 500,000 individuals who receive direct services from the Rural Health Services Outreach programs.

    It strengthens federal programs that fund health care services in rural communities, where access to care is often limited. It also supports local providers in delivering preventive screenings, managing chronic diseases, and expanding telehealth services so patients can get care closer to home.

    Why we support it:
    People living in rural areas face higher barriers to care and worse health outcomes. This legislation helps close those gaps by bringing services directly to underserved communities, improving early detection of disease, and reducing avoidable emergency room visits.

  • This bill is designed to streamline and modernize the prior authorization process within Medicare Advantage plans. Key provisions include establishing an electronic prior authorization standard to streamline approvals, reduce the amount of time a health plan is allowed to consider a prior authorization request, require MA plans to report on their use of prior authorization and the rate of approvals and denials, and encourage MA plans to adopt policies that adhere to evidence-based guidelines.

    Why we support it:
    Prior authorization delays can prevent patients from getting needed care at the right time. This bill cuts red tape, reduces administrative burden on providers, and helps ensure seniors receive timely, medically necessary treatment.

  • This bill increases oversight of pharmacy benefit managers, the middlemen that negotiate drug prices. It aims to eliminate hidden pricing practices and require greater transparency in how drug costs are set and passed along.

    Why we support it:
    Lack of transparency in the drug supply chain drives up costs for patients. This legislation helps level the playing field by shining a light on pricing practices and ensuring savings are shared with the people who need them most.

  • Accessia Health is joining the broader patient advocacy community in calling on Congress to pass the Safe Step Act (H.R. 5509). This popular bipartisan legislation seeks to protect patients from dangerous and disruptive step therapy and fail first protocols but needs to be passed into law before the end of 2024.

    Step therapy, sometimes referred to as ‘fail first’ or ‘step protocol,’ has severe consequences for patients who need care. Step therapy is a prior authorization practice where insurers require approval before covering a treatment or medication and where insurers implement tiered treatment pathways for medical conditions. Ideally, step therapy is designed to help curb unnecessary medical use and serves as a cost-management strategy.

    The Safe Step Act aims to reform step therapy protocols in health plans. Although step therapy protocols aim to reduce barriers to care according to some providers, they also can create administrative burdens to medical practitioners and patients in maintaining continuity of care. The Safe Step Act would not ban step therapy; however, it would require group health plans to provide exceptions for any medication step therapy protocols. The exceptions included in the legislation include when: 

    • An otherwise required treatment has been ineffective; 
    • Such treatment is expected to be ineffective and delaying effective treatment would lead to irreversible consequences; 
    • Such treatment will cause or is likely to cause an adverse reaction to the individual; 
    • Such treatment is expected to prevent the individual from performing daily activities or occupational responsibilities; 
    • The individual is stable based on the prescription drugs already selected; and 
    • There are other circumstances as determined by the Employee Benefits Security Administration.

     

    Why we support it:
    Step therapy can delay effective treatment and put patients at risk, especially those with complex or chronic conditions. This bill protects patients by ensuring medical decisions are driven by clinical need, not insurance barriers, and helps people stay on the treatments that work best for them.

Policy Updates and Newsletters

  • Midlothian, Va. (July 3, 2025) – In light of the passage of the current administration’s ‘Big, Beautiful Bill,” Accessia Health President Tiara Green has released the following statement:

    “As a charitable patient assistance organization, we are deeply concerned about the passage of the so-called ‘Big, Beautiful Bill’. The work reporting requirements for Medicaid and funding cuts will drive significant coverage losses. These changes disproportionately impact Americans with lower health literacy, poor access to technology and the internet, and complex life situations like chronic conditions that will make it too difficult to meet reporting requirements.

    When coverage is lost, patients often turn to nonprofits like ours. That means more time spent on forms and fewer resources for direct care.

    These changes will lead to millions more Americans becoming uninsured or underinsured, reducing access to primary care and preventive services. This will result in more avoidable medical crises, costly emergency room visits, and financial strain on hospitals—especially in rural and disadvantaged communities.

    In a time of growing health inequities, these policies risk making essential coverage harder to access and more confusing to navigate, even for those who remain eligible.”

  • Congressional Republicans are advancing a budget reconciliation package focused on tax and spending reforms, which requires only a simple majority. While the House has made progress through committee markups, the Senate is awaiting action. Deep party divides, especially over tax deductions and benefit cuts, make the bill’s passage uncertain.

    Key Committee Proposals:

    • Agriculture Committee: Approved $300B in cuts to the Supplemental Nutrition Assistance Program (SNAP). Additional information can be found here and the summary of key provision can be found here.
    • Energy & Commerce Committee: Mixed package with both benefits (Medicare physician payment fix, Kids Access to Care Act) and restructuring of Medicaid benefits. Additional information can be found here. A summary of key provisions can be found here.
    • Ways & Means Committee: Focused on tax policy, including targeting academic institutions and charitable organizations. Additional information from the Committee can be found here and a strong summary of key items can be viewed here. The statement of the Council of Nonprofits and Independent Sector on the package can be found here.

     

    FY 2026 Budget Request Highlights (Non-Binding):

    Earlier in May, the administration released a “skinny” Fiscal Year (FY) 2026 Budget Request to Congress. The annual document is a non-binding set of recommendations that proposes deep cuts to health-related programs. Though Congress is unlikely to adopt the full plan, but may look for opportunities to incorporate some modest funding reductions or policy items. A summary of the FY 2026 budget request is included below and additional information can be found here.

    • HHS: $93.8B (decrease of $33.3B from FY 2025)
    • NIH: $32.7B (decrease of $17.97B); eliminate funding for several institutes, propose 5 new ones: the National Institute on Body Systems Research, the National Institute on Neuroscience and Brain Research, the National Institute of General Medical Sciences (which currently exists), the National Institute of Disability Related Research, and the National Institute on Behavioral Health.
    • CDC: $4.35B (decrease of $3.59B); consolidate HIV/STD/TB funding, cut chronic disease and injury centers.
    • HRSA: $7.18B (decrease of $1.73B); reduce/eliminate the Maternal and Child Health Programs, training, workforce, and family planning programs.
    • SAMHSA: $6.23B (decrease of $1.07B); eliminate multiple mental health and substance use programs.
    • CMS Program Management: $2.99B (decrease of $674M).
    • AHRQ: $247M (decrease of $129M); to be moved under the new Office of Strategy.
    • Office of the Secretary/Assistant Secretary for Health: $531M (decrease of $180M); propose consolidations and cuts to minority/women’s health and youth prevention programs.
    • New Proposal: $500M for “Make America Healthy Again” – focused on lifestyle, nutrition, and environmental health but significantly underfunded compared to eliminated programs.

     

    As Congress works on the FY 2026 spending bills, it is important they hear from constituents about the value and impact of increasing funding for key programs.

Sign On Letters

Help us advocate for patient access today.

Advocacy is most effective when it is timely, coordinated, and easy to act on. Our Advocacy Action Center gives you a direct way to reach your elected officials on the healthcare issues that matter most to patients, caregivers, and families living with rare, chronic, and complex conditions.

This is the simplest way to make your voice heard without having to search for contact information or draft messages on your own. Each action is connected to active legislation and policy decisions where patient input truly matters.

Why Use the Advocacy Action Center

  • Automatically identifies your federal and state lawmakers based on where you live
  • Provides clear, issue specific messages grounded in real patient impact
  • Allows you to email or call lawmakers in just a few clicks
  • Ensures advocacy efforts are timely and focused on decisions that are happening now


How to Get Started

Join our Advocacy Action Center to receive alerts when critical healthcare decisions are approaching. When action is needed, you will get a straightforward explanation of the issue and a ready to send message you can personalize if you choose.

This is advocacy without barriers. Direct, effective, and built to protect access to care, patient support programs, and medical research funding when it counts most.