The $2.5 Trillion Math Problem That Rare Disease Families Can’t Afford to Ignore

In Washington, big numbers are being thrown around again—$4.5 trillion in tax cuts, $2 trillion in spending cuts, and now talk of using tariffs to patch the difference. But for families like mine in the rare disease community, this isn’t abstract math. This is life, access, survival.

Let’s break it down with a simple math problem:

The Math Problem

Proposal:

• Tax cuts: –$4.5 trillion

• Spending cuts: +$2 trillion

• Tariff revenue: +$3.3 trillion (if a universal 20% tariff is implemented)

Net Result:

–4.5T (tax cuts)

+2T (spending cuts)

+3.3T (tariffs)

= +$0.8 trillion

On paper, we’re not in the red. But that only holds if you believe a 20% universal tariff won’t backfire—hurting businesses, raising prices, and slowing down the economy. Most economists aren’t that optimistic.

Why This Matters for Rare Disease Families

Rare disease families are often hanging on by threads—threads woven from Medicaid, NIH funding, SSDI, and the hope of future treatments.

1. Medicaid & SSDI Cuts Hurt the Most Vulnerable

When spending cuts are on the table, it’s rarely defense or congressional salaries on the chopping block. It’s healthcare. It’s Medicaid waivers. It’s SSDI. It’s programs that help the 1 in 10 Americans living with a rare disease just get through the day.

Cutting these programs by hundreds of billions over the next decade would mean longer waitlists, fewer specialists, and more families forced to pay out of pocket—or go without.

2. NIH Cuts Stall Progress

Many rare diseases have no FDA-approved treatment. That’s where NIH-funded research plays a critical role. A spending squeeze means fewer grants, paused trials, and scientists abandoning rare disease fields altogether because they can’t secure funding.

When we say “cuts,” we’re not just talking about budget lines. We’re talking about stalled cures.

3. Tariffs Could Raise the Cost of Careay “cuts,” we’re not just talking about budget lines. We’re talking about stalled cures.

3. Tariffs Could Raise the Cost of Care

Even if tariffs bring in revenue, they act like a hidden tax—raising prices on imports, including medical devices, specialized equipment, and pharmaceuticals. For families already paying tens of thousands annually in uncovered costs, this could be devastating.

So even if tariffs “solve the math,” they may cause collateral damage to those least able to absorb it.

The Bottom Line

The math may look balanced on paper. But real life isn’t math class.

Balancing the federal budget on the backs of medically fragile children, rare disease researchers, and disabled Americans is not fiscal responsibility—it’s moral failure.

If we want to talk about numbers, here’s one to remember: 30 million. That’s how many Americans live with a rare disease. Every policy—every cut, every shift—either moves us closer to equity and access… or leaves us further behind.

We deserve better math.