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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

Accessia Has Three Core Priorities That Guide Our Advocacy Efforts:

  • Raise awareness of the community we serve and educate agency staff and members of Congress about the challenges and opportunities facing patients.
  • Push for bipartisan reforms focused on improving health outcomes and lowering costs for patients, including advancing access and address disparities.
  • Enhance federal programming focused on serving various patient communities.

Issues

  • The  Accelerating Kids Access to Care Act (H.R. 1509, S. 752) requires states to establish a process through which qualifying out-of-state providers may temporarily treat children under Medicaid and the Children’s Health Insurance Program (CHIP) without undergoing additional screening requirements.

    Specifically, states must establish a process through which qualifying out-of-state providers may enroll for five years as participating providers to treat individuals under the age of 21 without undergoing additional screening requirements.

    A qualifying out-of-state provider (1) must not have been excluded or terminated from participating in a federal health care program or state Medicaid program; and (2) must have been successfully enrolled in Medicare or a state Medicaid program based on a determination that the provider posed a limited risk of fraud, waste, or abuse.

     

  • The bipartisan Help Ensure Lower Patient (HELP) Copays Act (S.864, 119th Congress) eliminates barriers to treatment for patients ensuring that they can afford the necessary and life-saving medications prescribed by their doctors.

    The legislation requires health plans to count the value of copay assistance toward patient cost-sharing requirements. 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.

    Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements.

  • The Improving Seniors’ Timely Access to Care Act (H.R. 3514, S.1816) is bipartisan legislation 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.

  • 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.

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

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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.