Twitter Chat: Right to Try

On May 30, 2018, President Trump signed the Right to Try bill into law. It’s an undoubtedly controversial legislation that aims to tackle a complex issue involving a myriad of stakeholders. But what else is new in healthcare?

Right to Try allows terminally ill patients to access experimental therapies not approved by the FDA. But isn’t that what clinical trials are for? Well, yes. But unfortunately, not every patient living with a medical condition will qualify for a clinical trial. That’s where Right to Try comes in, allowing patients to access unapproved therapies outside of clinical trials.

In all of the buzz surrounding Right to Try, we haven't heard too much from the patient and caregiver perspective - arguably the most important point of view in all of this. So let’s get the patient perspective out to the forefront.

Not super familiar with the ins and outs of the legislation? No biggie! Join us to learn and ask questions. As a primer to the conversation, we’ve included a list of resources to check out as well as a brief overview of both sides.

Questions

1) What is your stance on Right to Try, and why? (It’s ok to say you’re not sure or split down the middle!)

2) Proponents of Right to Try have argued that compassionate use is not enough. There is a need for expedited access to treatment through bypassing the FDA and putting the decision solely into the hands of the patient and physician. What are your thoughts on this position?

3) Opponents of Right to Try have argued the potential sense of “false hope” the option could give patients, and in turn, the financial devastation it could cast upon patients and families. What are your thoughts on this position?

4) What are some of the other pros/cons that helped shape your decision?

5) Whether you agree with Right to Try or not, do you feel the patient voice played an active role in the development of the legislation? Why or why not?

6) Closing Thoughts: Did you learn something new? Has your position on Right to Try evolved?

Right-to-Try proponent philosophy

  • Most patients are excluded from clinical trials because they are “too sick”. For example, a study on asthma trials found that on average only 6% of real-world asthma patients were “healthy enough” to participate in a clinical trial.

  • The Compassionate Use program’s application process is overly complex and time-intensive.

  • It takes too long for promising treatments to be approved.

  • The government should not get in the way of the fundamental freedom any one person should have to save their own life.

Right-to-Try opponent philosophy

  • Right-to-try will foster false hope. Through the legislation, patients can access therapies after they have made it through Phase 1, which is a very low threshold to pass. Only 13.8% of drugs that enter a Phase 1 study will ever be approved.

  • Insurers and pharma companies are not required to cover the cost of the experimental therapy, potentially leaving patients/families in financial ruin for a treatment that is unlikely to work.

  • The Compassionate Use program already approves 99% of requests it receives.

  • It could ultimately limit or completely restrict future access of the drug to the general population. Bad press from patients who experience harmful effects of the therapy outside of a clinical trial could scare off eligible patients from enrolling, thereby seriously delaying or halting the clinical trial.

Additional resources

Proponents

Five reasons for Right-to-Try

Thiessen: Terminally ill thank GOP for ‘Right to Try’

Opponents

'Right-to-Try' Drug Law Offers No Miracle Cure

Yardley man has terminal illness, but can't support GOP 'right to try'

Both sides

What you need to know about right-to-try legislation

‘Right to try’ bill advances, would allow some patients access to experimental treatments (Featuring Breakthrough Crew Ambassador, Frank Rivera)


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The Clara Health team is passionate about changing the clinical trial landscape, making it easy for patients and families to access breakthrough treatments.