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Right to Try Has Been Law for Seven Years. Dying Patients Still Can't Access Experimental Treatments.

Right to Try Has Been Law for Seven Years. Dying Patients Still Can't Access Experimental Treatments.
Congress passed the Right to Try Act in 2018 promising terminally ill patients access to experimental therapies. Seven years later, the FDA reports only a handful of uses annually — and the FDA's own rejection of a promising melanoma drug last month proves the gap between the law's promise and reality is as wide as ever. The law was never the solution its supporters claimed, and the FDA just made that painfully clear.

The Promise Was Big. The Results Are Not.

When President Donald Trump signed the Right to Try Act in May 2018, surrounded by patients and cameras, he called it a "fundamental freedom." Terminally ill Americans would finally be able to access experimental therapies without waiting years for full FDA approval.

Seven years later, the FDA's own data tells a different story: just 12 drugs used under the law from 2018 to 2022, with only a few more annually since, according to FDA records. The law hasn't produced the promised access revolution.

The FDA Just Rejected a Melanoma Drug. Watch What Happens Next.

Last month, the FDA issued a "complete response letter" rejecting RP1, an experimental immunotherapy for advanced melanoma. The agency cited insufficient evidence of effectiveness and concerns about the trial's design, according to Reason.

Oncologists pushed back hard. They argue the FDA dismissed encouraging response data and applied standards that don't fit patients who have already exhausted every other option. For someone with advanced melanoma and no remaining approved treatments, that rejection isn't a bureaucratic footnote. It's a death sentence.

Shouldn't Right to Try cover exactly this situation? The short answer is yes — in theory. In practice, it doesn't work that way.

The Law Has a Fatal Flaw Nobody Wanted to Talk About

Critics warned about this in 2018, and they were right. The biggest barriers to accessing experimental treatments were never primarily FDA red tape. They were manufacturer reluctance, liability concerns, and institutional resistance — and the Right to Try Act does nothing to fix any of those.

The law doesn't require drug manufacturers to provide investigational products. It doesn't require physicians to prescribe them. It doesn't require hospitals to administer them. According to the National Institutes of Health's published analysis by oncology nurse practitioner Pamela Hallquist Viale, liability and cost provisions in the law were concerning from the start.

The result? A "right" that ends the moment anyone else in the chain says no.

In 2019 — just one year after the law passed — STAT News reported that an ALS patient whose name literally appears in the law itself still couldn't get treatment because the manufacturer declined to provide it. That wasn't an edge case. That was a preview.

The FDA's Own Track Record Complicates the Narrative

The FDA wasn't actually the main villain before this law existed. According to Scott Gottlieb, who served as FDA Commissioner under Trump, the FDA was already approving 99% of patient requests for experimental drug access before Right to Try — either immediately by phone or within a few days. That's the FDA's Expanded Access program, which has existed for over three decades.

The political framing of "FDA bureaucrats blocking dying patients" was always more rhetoric than reality. The real bottleneck was — and still is — whether manufacturers will participate at all.

Right to Try 2.0 Is Quietly Gaining Ground

A newer wave of state-level legislation is already trying to fix what the federal law broke. At least 17 states have now passed "Right to Try for Individualized Treatments" laws, also called Right to Try 2.0, according to the Goldwater Institute. These go further — allowing treatments that haven't even completed a Phase I trial if they're individualized to a specific patient.

Montana expanded its state Right to Try Act in May 2023 to cover non-terminal patients. Colorado was the first state to pass any right-to-try law back in 2014, and the state-level movement has been more aggressive and more adaptive than the federal version.

The mainstream press continues debating whether the 2018 federal law was good or bad — while states are already on version 2.0.

What's Actually Broken (And Who's Accountable)

The FDA's RP1 rejection is a legitimate problem worth scrutinizing. Oncologists who argue the agency applied ill-fitting standards to patients with zero remaining options deserve to be heard. That's a real, specific failure and the FDA should answer for it.

But blaming everything on the FDA is intellectually lazy. The pharmaceutical manufacturers who decline to provide investigational drugs — citing liability and approval risk — face zero consequences under the current law. They get a liability shield either way.

Congress passed a law, held a signing ceremony, declared victory, and moved on. Nobody built in enforcement. Nobody required participation. Nobody created a real mechanism for access.

Dying patients got a permission slip. Not a path.

What This Means for Regular People

If you or someone you love is diagnosed with a terminal illness and standard treatments have failed, your options under Right to Try are almost entirely dependent on whether a drug company decides to cooperate. The law gives you the right to ask. It gives everyone else the right to say no.

The RP1 rejection is a reminder that the fight isn't over — and that good intentions written into law mean nothing without mechanisms that actually work. Seven years of near-zero usage isn't a success story. It's a warning that the next version of this law needs teeth, not just talking points.

Sources used for this briefing

This briefing was written by UBH's AI agent — these are the reporting inputs it draws on, linked so you can verify.

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ReasonPatients Have a Right To Try. Why Can't They Use It?
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en.wikipediaRight-to-try law - Wikipedia
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pmc.ncbi.nlm.nih.govThe Federal ’Right To Try’ Act: An Answer to New Treatments During Terminal Illness? - PMC
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fda.govRight to Try | FDA