Friday, September 17, 2021

Trump signs bill providing experimental treatment for terminally ill

US President Donald J. Trump (L) hugs Jordan McLinn (R) of Indiana, who has Duchenne muscular dystrophy, after signing the ‘Right to Try Act’, in the Eisenhower Executive Office Building (EEOB) on the White House complex, in Washington, DC, USA, 30 May 2018. The law will allow terminally-ill patients to legally seek drugs in the experimental phase and not yet approved by the US Food and Drug Administration (USFDA). EFE

Washington, May 30 (EFE).- President Donald Trump on Wednesday signed the so-called “Right to Try” law, a controversial piece of legislation legalizing experimental treatments for terminally ill patients for whom regular treatment has proven ineffective.

“To me, this is … a very important day. Been looking forward to this for a long time … I said, … tell me, which is the better bill for the people? Not for the insurance company, not for the pharmaceutical companies. I don’t care about them,” said

Trump at the White House moments before signing the bill.

“We’re going to be saving tremendous numbers of lives,” said the president, who criticized the current regulations that lengthen the time for getting medications approved, which sometimes takes many years.

“And for countless patients, time, it’s not what they have,” Trump said.

The president welcomed and acknowledged several terminally ill patients at the ceremony, who were on hand along with Vice President Mike Pence and Health Secretary Alex Azar.

Starting now, the Food and Drug Administration will not have the right to supervise the experimental treatments as they have to date and will only be informed once they are scheduled.

In addition, the bill – which the House of Representatives approved last week 250-169 after the Senate did so last August – authorizes patients to try these meds before they go on the market and it will be the drug firms who will decide whether or not to approve the experimental treatments.

US President Donald J. Trump (C) holds up the ‘Right to Try Act’ after signing it during a ceremony in the Eisenhower Executive Office Building (EEOB) on the White House complex, in Washington, DC, USA, 30 May 2018. The law will allow terminally-ill patients to legally seek drugs in the experimental phase and not yet approved by the US Food and Drug Administration (USFDA). EFE

The measure has sparked controversy among groups defending terminally ill patients, who have claimed that the law will have little impact on access to such treatments but could have a negative effect on the public’s view of the FDA.

“We don’t think that this law increases in a safe and genuine way access to therapies that are being researched outside of clinical trials.

Unfortunately, it’s particularly worrying,” Christina Jensen, with the National Organization for Rare Disorders, told EFE.

“We’ll do everything we can to protect our patients from ineffective therapies,” she added.

Forty states have passed similar legislation in recent years with the same objective and for decades measures have been implemented to give dying patients access to medications outside the normal clinical trials, known as an “expanded access” or “compassionate use” program.

This law has been one of Trump’s legislative priorities, and one of Pence’s, but experts have said that although it will be a mark in Trump’s favor in the eyes of the public, in reality very little will change for terminally ill patients and opponents have said that it will give false hope to many who can already obtain the medications via an FDA-controlled process.