The battle for parental rights.

Pass 'right to try' to advance my child's life — tomorrow, it could be yours

by Mary Vought

 | May 22, 2018 09:40 AM

Recently, two children of the United Kingdom, Alfie Evans and Charlie Gard, became victims of a failed system that denied them the opportunity to access experimental treatments.

(AP Photo/Matt Dunham)

Lawmakers have another chance to make things right by passing "Right to Try" legislation that will give terminally ill patients one more shot at life. Legislation making experimental drugs and treatments accessible for individuals with life-threatening conditions is set to be voted on Tuesday by the House of Representatives.

Thanks to Sen. Ron Johnson, R-Wis., a similar bill passed the Senate last August and is a lead priority for President Trump. Until now it has been in political limbo due to a lack of bipartisan backing. 

As the mother of a child with cystic fibrosis, a life-threatening illness, I want options when it comes to experimental treatments that could prolong my daughter’s life. But as an American and taxpaying voter, I also want to see Congress working to take morally correct action for the most vulnerable and sickest among us.

Recently, two children of the United Kingdom, Alfie Evans and Charlie Gard, became victims of a failed system that denied them the opportunity to access experimental treatments. As the world watched, their parents emotionally fought to access these unconventional medical options — but in the end, they lost. In America, we must learn from their tragic loss and do right by our own sick individuals who are fighting, against all odds, to stay alive. 

Opponents argue that increased risk is involved and it makes this legislation unsafe for recipients. But this bill would still require all experimental drugs to pass initial safety testing by the FDA. Often, this onerous process of approval means key medications get bogged down in the pipeline waiting years before receiving a final endorsement — years that many terminally ill patients don’t have.

Patients facing terminal illnesses should have the choice to take the risks associated with experimental medications. Parents of a sick child or a patient only turn to experimental drugs as a last resort. Patients are well informed of the risks and complications these avenues of care may create, but they are willing to take those risks to potentially save or extend their life. That should be their choice. 

The past few years we’ve seen success in the cutting red tape and freeing businesses from the regulatory burden inflicted upon us by the federal government. That should be true of the drug approval process as well, especially when it comes to the unhealthy and terminally ill. 

Like other parents of sick children, I’m constantly monitoring several key medications currently in the approval pipeline that could improve my daughter’s quality of care and increase her life expectancy. But the fact remains that our status quo drug approval process is unnecessarily complicated and often inaccessible for average Americans.

As a country that values the entrepreneurial and innovative spirit, we should allow more options for the terminally ill. This is not careless, it’s compassionate.

One day, experimental medications could save my daughter's life. Or, it could be your child whose life is saved thanks to the right to try.

Mary Vought (@maryvought) is a Republican strategist. She resides in Arlington, Va., with her husband and two children.