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Nothing About Us Without Us

Author: Sue Hagen, Research Services Director

I recently attended the virtual annual meeting of the Drug Information Association. I took in four days of sessions, all relating to topics of interest to all stakeholders involved in drug discovery and development. My head is still spinning! While you would think that a conference on drug development would focus solely on science, regulatory matters, safety, and clinical trials; not so. Weaved through every session was the importance of the patient population being at the forefront from the beginning to the end of the process.

To that point, the title of this blog comes from a quote by a presenter during one of the sessions: Nothing About Us Without Us. And the “us” is you! The message to those who are affected by ataxia or are at-risk for Ataxia is that this a transformative moment. Your involvement early on in drug development (even before the clinical trial phase) is not only welcomed, but in some cases required. Your experience and opinions matter, and pharmaceuticals want to hear from you!

I have blogged about this previously when we began using the terminology of “Research Collaborator” rather than research subject, or the completely obsolete term that was used in the past of “guinea pig.” Patients are research partners.

Throughout the four-day meeting, the following words were used frequently:

  • Patient pathway
  • Patient preference
  • Patient experience
  • Patient involvement
  • Patient centric
  • Patient reported outcomes
  • Patient engagement

It was clear that nothing will take place in the field of drug development without you. You can help in clinical trial design, determining what outcomes should be used to measure if the treatment is effective, what is the risk/benefit that you would tolerate and countless other aspects necessary to bring an effective drug to FDA for approval.

So, what does that mean for the Ataxia community?

NAF would like to have every single person affected by Ataxia and their family members connected to NAF. Another quote from the DIA meeting was, “It takes a crowd to draw a crowd.” When more and more Ataxians come forward and share their diagnosis and become a member of the NAF, I am convinced that we will move faster to treatments. And when a treatment for Ataxia is announced, there will be quite a crowd. Be a part of that crowd right now and help with NAF’s vision: “A World Without Ataxia.”

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