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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.

Policy Monthly Updates

  • 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.

Initiatives

  • Accessia Health is joining the broader patient advocacy community in calling on Congress to pass the Safe Step Act. 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.

    Click here to learn more and take action. 

    Source: National Health Council

  • The bipartisan Help Ensure Lower Patient (HELP) Copays Act 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.

    Click here to learn more and take action.

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