The Budget, Presidential Initiatives, and Roadblocks to Both
Since our most recent Word From Washington in February, the Trump Administration has continued to advance it’s pursuit of action through Executive Orders, including new executive orders aimed at cutting federal regulations, advancing the Administration’s “Make America Healthy Again” initiative, and designating English as the official language of the United States, among others.
As the President continues to try to advance his policy goals, many states and agencies are attempting to slow down the pace of change, bringing lawsuits against the administration for unlawful firings of government agency employees, funding freezes for foreign aid under USAID, and the funding freeze of government grant and loan programs which we addressed in our last update.
Aside from these pursuits and backlash, the President is also asking for Congress to provide him with a budget package that significantly cuts federal spending to support aggressive tax cuts. President Trump also gave his first address to both chambers of Congress this week in which he listed his Administration’s accomplishments and goals for this year and this term, which was met with a great deal of celebration and disapproval from the Republicans and Democrats, respectively.
Short on Time
Part of the reason for the rapid pace of actions by the Administration is to advance President Trump’s goals and initiatives within the next few months, as the only real path to his goals lies with the current Congress. Both the House and Senate have only very slim Republican control, and with the government funding deadline approaching on March 14 as well as congressional recesses coming this year, they only have about a year and a half before the midterm elections, which will likely flip at least one chamber of Congress back to Democrat control.
Because of this limited timeframe, we expect a continued rapid pace of executive orders, presidential actions and recommendations, and requests for specific legislation within the coming months to accomplish as much as possible within the short time of control over the federal government.
Congress Drives Ahead with the Budget
Congress has continued to advance its budget package for approval by the Trump administration, pursuing about $4 trillion in tax cuts. On February 25, the House voted to pass H. Con. Res. (House Concurrent Resolution) 14, which is a comprehensive budget bill aimed at cutting significant spending by the Federal Government – on the order of about $2 trillion. The Senate companion bill is S. Con. Res. 7 and remains in discussion within the Senate.
The Budget and Healthcare
One area of concern HFA has identified in the proposed budget cuts falls under the House Energy and Commerce Committee, which oversees Medicaid funding and which could see a potential reduction of $880 billion in funding. While several House Republicans have repeatedly stated that Medicaid funding will not be affected, echoed by the President, we note Medicaid funding reached $872 billion in 2023, the most recent fiscal year.
Proposed healthcare cuts could have devastating consequences for our community, including:
- Loss of Medicaid coverage, putting high-cost, lifesaving treatments out of reach.
- Higher insurance premiums if enhanced Premium Tax Credits (ePTC) are reduced, making Marketplace plans unaffordable.
- Increased financial hardship for families already struggling with the high costs of managing a chronic condition.
While several Republican holdouts initially opposed the House budget resolution – many due to concerns about Medicaid funding – they were quickly brought in line by the Speaker of the House, Mike Johnson (LA-4), and the Majority Whip, Tom Emmer (MN-6), before the final vote. All but one Republican Representative, Rep. Massie (KY-4), voted for the budget resolution, who joined the Democrats in unanimous disapproval.
Senate Republicans will likely vote along party lines to pass a final budget package, but there could be hangups during the negotiation process between both the House and Senate, both as it relates to how the cuts will be supported as well as which programs see reductions, with Medicaid again being a large area of concern since millions of Americans who rely on Medicaid live in Republican districts. The Senate has also stated that it will not consider the House Budget Resolution until late March, opening the possibility of a government shutdown beginning March 14.
Current Healthcare Legislation and Discussions
As of this publication, HFA is aware of several bills which have been proposed that could impact our community:
- H.R. 44 – Expands 340B Drug Program Access to rural emergency hospitals
- S. Res. 104 – A resolution that designated February 27th, 2025, as “Rare Disease Day”
- H.R. 114 – Repeals the Affordable Care Act
- H.R. 127 – Provides an exemption from the individual mandate under the Affordable Care Act
- H.R. 247 – Extends and codifies the enhanced Premium Tax Credit (ePTC)
- S. 526 – Prevents unfair and deceptive practices and dissemination of false information related to pharmacy benefit management (PBM) services for prescription drugs
- H.R. 639 – Bans prior authorization requirements under private and federal health plans and programs
- H.R. 919 – Expands treatment for chronic conditions to meet preventative care deductible requirements under high-deductible health plans with health savings accounts (HSAs)
- H.R. 1598 – Removes some age restrictions on Medicaid eligibility for working adults with disabilities
- H.R. 1750 – Provides investments in research on rare diseases and conditions disproportionately affecting minority populations
While most of these bills continue to work their way through the legislature, we will continue to follow them and support or oppose them as necessary. We also applaud some of the Republican members who have introduced these bills to expand access to rural care and ban insurers from using Prior Authorization or deceptive practices by Pharmacy Benefit Managers (PBMs). Healthcare is a non-partisan issue, and we support and appreciate any member willing to put in the time and effort to advance the well-being of their constituents, including those with rare diseases and bleeding disorders.
Aside from the bills above, we are also interested in and following the broader national discussion on PBM reform, which is happening both at the federal and state level. While states like Iowa and Colorado work on state-level PBM reform bills, Congress is also having the same conversation. On February 26, the House Energy and Commerce Committee met for nearly four hours to discuss the issue, with PBM reform generating a large amount of support from both sides of the aisle.
However, the conversation was hindered by the fact that PBM reform would have been included in a 2024 government funding bill, which was purportedly killed by the Republican members of congress after incoming President Trump and Elon Musk indicated over social media that any part of the funding package which wasn’t related to maintaining funding (such as reform bills like this one) should be cut until President Trump assumed office.
Now that the new Administration has taken office and this conversation faces renewed time in committee, we look forward to Congress working for comprehensive PBM reform as part of their and the administration’s efforts to cut fraud, waste, and abuse within healthcare, and as part of the advancement of President Trump’s “Make America Healthy Again” initiative. Should a PBM reform bill be reintroduced, we will work with our coalition partners to ensure it both protects patients and does not adversely affect our community.
In the spirit of reform, we are also continuing to work with our coalition partners to pursue a ban on Copay Accumulator Adjustment Programs (CAAPs) via a newly introduced HELP Copays bill, and we are also monitoring legal advocacy relative to patient protections, ensuring access and affordability to treatments like those for bleeding disorders.
Washington Days
We would be remiss to not include a shout-out to the National Bleeding Disorders Foundation (NBDF) for their work last week at Washington Days! Washington Days is a yearly event where patients and community members from around the country have a chance to meet with their elected officials in Washington, D.C. and voice their support for legislation that would help our community. Last week, participants took part in meetings on Capitol Hill, arriving on March 5 for educational sessions and training and with their meetings on March 6.
HFA launched an advocacy alert for our community to take action virtually and support all our friends who were at Capitol Hill. Help us reach 500 supporters and amplify the voice of the bleeding disorders community so that we can educate members of Congress and join a unified push for safe and effective treatments, affordable care and coverage, and quality health coverage!
Your Role in Our Continued Work
HFA’s efforts need amplification from your stories to protect and empower the entire bleeding disorders community. Raise your voice to be heard with HFA today by:
Also, be sure to stay up to date with our next Word from Washington post and State of the States posts here, and encourage your friends, family, and local bleeding disorders chapter to support us in this work!
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