We are asking for your help, once again, in collectively responding to proposed legislation that will negatively impact our APS Type 1 community. The Senate is currently debating a reconciliation bill (aka the “One Big Beautiful Bill Act”) passed by the House last month. The bill contains devastating cuts that will negatively affect access to healthcare for many who live with a rare disease or other chronic conditions. Much of the media coverage has focused on the proposed Medicaid cuts. What is not being amplified is the cascading effects of Medicaid cuts to our healthcare system as a whole. Costs and access to care will be impacted for many, regardless of where their health insurance comes from. If/when the Senate passes the bill, it will go back to the House for a final vote. This means there is still time for our voice to be heard. Below are some quick facts about the impact of the bill on healthcare:
- Cuts to Medicare: Many in the rare disease community rely on Medicare for chronic condition coverage. Because the current reconciliation bill adds $3.8 trillion to the national debt, it will trigger an automatic $500 billion cut to Medicare services.5 Additionally, Medicaid covers some costs and additional services for many Medicare enrollees.
- Cuts to the Affordable Care Act (ACA): The current bill ends tax credits that cap premiums for families receiving insurance through the ACA. Without an extension, 4.2 million Americans will lose health coverage. Many more who keep their coverage will see increased premiums and costs that add up to thousands of dollars, per person, annually. 4
- Cuts to Medicaid: Approximately 5.2 million people will become uninsured, following new “work requirements” 2. Studies show these type of requirements do not increase employment but instead create extensive red tape that is so difficult to navigate that people lose coverage.3 Those who keep their coverage will face increased costs for care.
- Impacts to rural and children’s hospitals: Rural hospitals disproportionally rely on Medicare and Medicaid payments and typically have very thin margins or operate at a loss. Estimates are that 300 hospitals across the country will be at risk of closure or limiting services based on the cuts proposed in the bill.6 Additionally, on average, half of the patients at children’s hospitals are covered by Medicaid.7 Therefore, significant cuts to Medicaid are likely to threaten the financial status of children’s hospitals.
If you’ve engaged in advocacy with your elected officials before, our ask is simple. If you haven’t, it may seem intimidating. You can do it! Below we provide you with all the tools you need to make a call or send a message to your U.S. Representative and U.S. Senators. The offices of elected officials typically log every call and email, so every call and email matters. You can even request an in-person meeting with your U.S. Representative through their website. This action can take as little as five minutes, but it makes an outsized impact.
If you have questions or need additional support, please contact us: info@apstype1.org.
Together we are stronger!
ACT NOW
Step 1: Find your Elected Officials
Find your U.S. Representative and U.S. Senators using this link. Here you will find phone numbers and website links. Their websites will have a “contact” page where you can cut and paste the message below.
Step 2: Make a Call
If you decide to call, you will likely reach a staffer or be prompted to leave a voicemail. You may be asked to provide your address or zip code to verify that you reside in the district or state of the official you are calling. Use the following script as a start or share your own story. Personal testimonials with specifics are impactful. Your story matters.
“Hi, my name is __________. I’m calling as a member of the rare disease community to vote “no” on the “One Big Beautiful Bill”. Myself/My son/My daughter has APS Type 1, a life-threatening genetic autoimmune disorder that impacts us every day. We/Many in our community depend on Medicare/Medicaid/the ACA for our healthcare. The cuts in the Big Beautiful Bill will make it very difficult to access the care that we need to stay healthy. The financial strain associated with these cuts jeopardizes lives, including people in my family. Thank you for your time.”
Step 3: Write an Email
If you decide to email, write a message or use the following, personalizing the highlighted areas and adding any other details you feel will make the message even more meaningful. Copy and paste the message into the appropriate box on the “contact” page.
Subject: Vote no on “The Big Beautiful Bill”
As a member of the rare disease community, I am writing to express my deep concern about “The Big Beautiful Bill”. I/ My son/ My daughter has APS Type 1, a life-threatening genetic autoimmune disorder that creates daily challenges. We/Many in our community depend on Medicare/Medicaid/the ACA for our healthcare. The cuts in the Big Beautiful Bill will make it very difficult to access the care that we need to stay healthy. The financial strain associated with these cuts jeopardizes lives, including people in my family. Thank you for your time.
Footnotes
1. Joint Economic Committee (JEC), https://www.jec.senate.gov/public/_cache/files/d5fb1359-92a6-47ac-8fae-aeffb1de2f6e/jec-fact-sheet-on-state-by-state-impacts-of- health-care-cuts.pdf
2 Congressional Budget Office (CBO), https://www.cbo.gov/publication/61420Kaiser Family Foundation, https://www.kff.org/medicaid/issue-brief/5-key-facts-about-medicaid-work-requirements/
3. JEC,https://www.jec.senate.gov/public/_cache/files/d5fb1359-92a6-47ac-8fae-aeffb1de2f6e/jec-fact-sheet-on-state-by-state-impacts-of-health-care-cuts.pdf
4. CBO, https://www.cbo.gov/system/files/2025-05/61423-PAYGO.pdf
5. Cecil G. Sheps Center at the University of North Carolina at Chapel Hil, https://www.markey.senate.gov/imo/media/doc/letter_on_rural_hospitals.pdf
6. Children’s Hospital Association. https://www.childrenshospitals.org/-/media/files/public-policy/medicaid/fact_sheet/2023_cha_medicaid-payment.pdf