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Terminally Ill Patients, Advocates Applaud Right to Try

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Terminally Ill Patients, Advocates Applaud Right to Try

The Senate passed Right To Try legislation that may allow patients access to experimental drugs before FDA approval, a huge victory for patients and advocates.

The U.S. Senate stood with terminally ill patients and passed legislation last week that would allow patients to decide—not the government—their treatment options by approving access to experimental drugs not yet approved by the FDA.

The bill now goes before the House, and if it makes it to President Trump’s desk it’s likely he will sign it into law, as he has indicated his support for the so-called Right to Try legislation.

The terminally ill and their advocates have spent years trying to get the Federal Government to allow patients to access experimental drugs that have shown efficacy in early clinical trials but have not yet been approved by the FDA.

The Goldwater Institute, which modeled the legislation, has been instrumental in getting Right to Try passed in 37 states.

After the Right to Try passed the Senate, the National Right to Try movement posted on their Facebook page, “We were flooded with emails and messages from patients and their families who have been given a renewed sense of hope. On our team, tears of joy were shed, high-fives were given, and this morning, we’re all back to work to make sure this bill ends up on President Trump’s desk, who has pledged to sign it. We’re fighting for each and every one of you and we won’t let you down!”

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This legislation will give new hope and other treatment options to those who have exhausted all other treatments on the market. It also gives those who are expected to die the option of trying promising treatments that could prolong, or even save, their lives.

Statistics show that it could take over a decade to get a new drug to market—time the terminally ill do not have.

Right to Try has now become a game changer.

There are countless stories of terminally ill patients who died before they accessed drugs that could have saved their lives. These promising treatments came onto the market after their deaths, and the Goldwater Institute has documented some of their stories on their website.

One group called the Abigail Alliance was formed by Frank Burroughs, whose daughter Abigail died of cancer at 21 after running out of conventional options. Her story, posted on the Alliance’s website, shows her oncologist felt the drug Erbitux could save her life. Her and her father’s fight to access the drug was denied.

Erbitux was approved by the FDA three and a half years after Abigail died. Burroughs, in an interview I did for another publication, said he believed Abigail would be alive today if she had had access to Erbitux.

A Texas oncologist, Dr. Ebrahim Delpassand, has helped nearly 100 patients under his state’s Right to Try law, according to the Goldwater Institute.

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Delpassand provided a treatment to these patients that has completed clinical trials but is not yet fully approved for advanced stage neuroendocrine cancer. Many of these patients were told they had only months to live and now a year later are still alive.

But opponents ignore Delpassand’s example and the will, the right and desire of the terminally ill to fight to live. They argue Right to Try is dangerous and gives false hope to the terminally ill. Another even says it will restrict, and restrict access to, experimental treatments.

An NYU medical ethicist told PJ Media the bill is “political” and “will actually result in great restriction” and will not help improve access to experimental drugs for patients. Another article, written after Trump announced his backing of Right to Try several months ago, called the legislation “ill-advised” and indicated “adverse effects” of the drugs would be hidden from the public. Another editorial in a magazine also was critical of the legislation.

“While such laws purport to offer hope for the dying, they will actually slow medical progress,” said an editorial in Modern Health Care magazine.

Despite the opposition, it’s clear that Right to Try is giving the terminally ill new hope, and at least a chance they would not have been afforded before to save or prolong their lives.


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Mary Lou Lang
About Mary Lou Lang 8 Articles
Mary Lou Lang is a freelance reporter in Middletown NJ, whose stories have been featured in the Washington Free Beacon, The Daily Caller, LifeZette, and financial sites including StreetAuthority and Trefis. Prior to freelancing, she worked at financial magazines for Dow Jones and the A.M. Best Company and other economic development publications.

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