ALS News Today Forums Forums Boosting Our Voices Awareness and Advocacy A balanced view about "Right To try"

  • A balanced view about "Right To try"

    Posted by Jean-Pierre Le Rouzic on June 3, 2019 at 1:45 pm

    A few adapted excerpts from the text:

    Several real issues exist in getting very sick patients onto the pathway that right to try was meant to create. These include:

    • Do patients have access to good medical care so they can be made aware of new drugs?
    • Can they convince a doctor to help them seek access to unapproved drugs outside of a clinical trial?
    • And, most crucial, is the company or sponsor developing a new drug willing to make it available?

    Arthur Caplan and colleagues at New York University’s Division of Medical Ethics quickly recognized that right to try could not succeed in meeting the hopes or hype vested in it. For doctors to be willing and able to seek access to experimental drugs, they need education about how to find new drugs and how to work with their sponsors. And for the pharmaceutical or biotech companies fielding these requests — who are the primary gatekeepers to these products — convincing them to be willing to grant access to unapproved drugs means addressing their concerns about possible negative ramifications of failure lest their investors bail on them.

    When Janssen, the pharmaceutical companies of Johnson & Johnson, approached Arthur Caplan wanting input about how to handle requests for access to investigational drugs by individuals who were ineligible for clinical trials, he jumped at the chance to shove right to try into a corner and be involved in a realistic strategy.

    They quickly realized that in order to seek access to Janssen drugs still in trials, doctors and patients first had to find them. That meant advising Janssen on creating user-friendly websites across the vast Janssen internet system with clear, meaningful contact information to guarantee that those making inquiries would know they had been received and that a response would be forthcoming. This is in contrast to right-to-try laws, which do nothing to ensure that anyone can find anything or that inquiries will be met with timely responses.

    Compassion for people who are dying is ethically commendable. Duping them with ideologically driven laws that provide no help is not. When legislators get near issues of access in our health care system they need to know what is involved lest they leave our most vulnerable citizens with nothing but rhetoric and press releases.

    https://www.statnews.com/2019/06/03/effective-ethical-right-to-try-process/

    Dagmar replied 5 years, 6 months ago 2 Members · 1 Reply
  • 1 Reply
  • Dagmar

    Member
    June 3, 2019 at 7:44 pm

    This is very helpful information. Thank you for sharing it Jean-Pierre!

    So many believe that just having the Right to Try law in place – – makes it so. But as the article points out, patients and physicians need to know what is available and who to contact. Someone should step up and create a networking software to fill the void.

     

Log in to reply.