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.
Accessia Has Three Core Priorities That Guide Our Advocacy Efforts:
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:
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.
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.
| The first half of 2025 has brought sweeping momentum in Washington. With a new Congress seated and the Trump administration advancing aggressive policy shifts, the landscape for medical research, public health, and patient care is shifting—fast.
Broad, structural debates are taking center stage, often pushing aside more targeted legislative work. But behind the headlines, key developments are unfolding that directly affect the communities we serve. To get up to speed quickly, watch our 90-second highlight video above. For a deeper dive, you’ll find detailed updates and analysis below. Budget Reconciliation Congress continues to work on Budget Reconciliation, commonly referred to as the “One Big Beautiful Bill” (H.R. 1). This type of legislation deals with taxes and entitlement programs related federal spending and can be passed with a simple majority. The House has passed its version of the bill, and the Senate is currently working on its own measure with the Finance Committee and Health, Education, Labor, and Pensions Committee recently releasing healthcare proposals that can be found below. The House and Senate will need to agree on, and pass, a final measure before September 30th.
The Issue The current House legislation and emerging Senate legislation advances cuts to Medicaid benefits, reductions in benefits for Supplemental Nutrition Assistance Programs (SNAP), and reforms to federal student loans. The Congressional Budget Office (CBO), a nonpartisan entity that tracks the cost and impact of legislation, stated that, in general, resources would decrease for lower income households, whereas resources would increase for middle to upper income households. Additional information can be found here. A summary of Medicaid related provisions from the House proposal can be found here.
FY Recission Package Request In addition to a budget request that called on Congress to slash funding for programs that serve the rare and chronic disease community, the administration also asked Congress to claw back money that was previously provided through a process known as a “recission”. The initial recission package is focused on foreign aid, but the administration has promised there will be more if this first package is passed. Additional information can be found here.
The Issue The House narrowly passed the first recission package and the Senate is on a ticking clock to pass the bill before time runs out given the rules of using this mechanism. The bill pulls back billions in previously appropriated funding for USAID, which includes global health resources that combat HIV, TB, and other conditions and infectious diseases abroad (along with funding for public broadcasting and other items). The administration has vowed to submit subsequent requests, including a recission for HHS programs, if this first request is successful.
FY 2026 Appropriations Each year, Congress decides how much funding goes to medical research, public health, and patient care programs through the annual appropriations bills. This process (ceremonially) starts when the President releases a budget request to Congress. For Fiscal Year (FY) 2026, the administration has asked Congress to drastically reorganize programs and to cut overall funding for the US Department of Health and Human Services by 22% and to reduce funding for medical research at the National Institutes of Health (NIH) by 40%!
The Issue While the proposed funding reductions and recommended wholesale elimination of programs by the administration are concerning, Congress ultimately makes annual funding decisions based on input from constituents and individuals impacted by federal programs. Moreover, Accessia Health has been joining efforts of community coalitions to increase funding while advocating with legislators and submitting testimony calling for enhancements to core programs. Congress is currently in the process of drafting FY 2026 funding bills. Thus far, the House has advanced proposals for the VA and its research and care program, the Food and Drug Administration, and the Department of Defense including its patient care and medical research programs. The House has largely preserved funding for these programs, but the Senate is poised to potentially include annual increases.
Patient Care Legislation
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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:
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.
Your voice matters, and it can make a real difference in shaping healthcare policies that impact millions of patients and families across the country. Whether you’re advocating for stronger patient protections, increased public health funding, or better access to care, reaching out to your representatives is a powerful next step.
Not sure who represents you in Congress? Use the official tools below to quickly find your elected officials:
Whether you’re calling or leaving a voicemail, here’s a simple script you can use:
“Hello, my name is [Your Full Name], and I am a constituent from [Your City, State, ZIP Code]. I’m reaching out to ask [Representative/Senator Name] to support legislation that strengthens healthcare access and patient support programs for individuals living with rare, chronic, or complex conditions.
Programs that fund patient assistance, protect Medicaid/Medicare, and invest in medical research are essential to the wellbeing of our communities. Please make healthcare access a priority in upcoming votes. Thank you for your service and for listening to constituents like me.”
Most lawmakers have an online contact form on their official website. You can use the same script above as the body of your message when emailing or filling out a form.