Alfie Evans' Lesson for the U.S.

By Naomi Lopez
April 30, 2018

Twenty-three month old Alfie Evans of Liverpool, England has died. Since a decision had been made by the UK’s National Health Service to remove Alfie from life support, Alfie’s parents fought the UK government for permission to take him to a hospital in Italy for further evaluation and care—which would have come at no cost to UK taxpayers. They not only lost that battle, they were also unable to take little Alfie home during his final hours.

Americans should heed the tragic lesson from Alfie’s case, as well as from Charlie Gard and Isaiah Haastrup before him, where the government made it illegal to try to save their children’s lives. A similar but happier outcome came for Ashya King whose parents resorted to kidnapping him and were even jailed for child cruelty in order to seek cutting-edge cancer treatment. Ashya remains in remission more than three years later.

The lesson for Americans is that patients and doctors—not government bureaucracies—should make medical decisions. And no one should ever be forced to beg the federal government for permission to try to save their own lives.

But terminal patients in the U.S. also face obstacles and, until the Right to Try movement swept the nation, patients were required to beg the federal government for permission to seek the same investigational treatments that are available to those who qualify for clinical trials.

For those terminal patients who have run out of treatment options, the Right to Try makes it legal for these patients, under their doctors’ care, to seek out investigational treatments that are being given to those patients fortunate enough to qualify for a clinical trial. Too often, terminal patients fail the clinical guidelines to participate or there are simply not enough slots.

While terminally ill patients are supposed to have access to investigational drugs through the FDA’s “compassionate use” program, an untold number of terminal patients cannot participate. That is because of an overly complex application that can take a physician dozens of hours to navigate and complete.

Fortunately, state Right to Try laws have already saved lives by offering a simpler pathway for patients, who have run out of options and are quickly running out of time, to seek these potentially lifesaving treatments that are undergoing FDA clinical review. These laws not only restore patient autonomy, but make the system more equitable so that more patients—not just a select few—can try to save their own lives.

Under these state laws, patients who have their doctor’s recommendation may seek treatments that have passed Phase 1 of the FDA approval process (and remain in the FDA evaluation). If the treatment sought is no longer available to patients enrolled in clinical trials, it is no longer available to patients under Right to Try.

The Right to Try movement has been and continues to be a bottom-up, bipartisan reform effort that has been driven by patient advocates. The rapid adoption of Right to Try laws in 40 states and counting has caught the eyes—and support—of members of Congress. Right to Try legislation is awaiting a Senate vote (a previous version of the bill passed the Senate with unanimous consent last year) before it can be sent to the President’s desk for signature.

The passage of Right to Try should be a strong reminder to congressional lawmakers on both sides of the aisle that, across the country, Right to Try is putting patients ahead of partisanship and politics. The federal government should not get a veto stamp over the right to try to save one’s own life. It is time for Washington to affirm that important principle.

Naomi Lopez is the director of healthcare policy at the Goldwater Institute.