The recent Burrill Conference underscored the emergence of new personalized medical therapies for children and adults based on genetics, information, and collaboration.  NB
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The Patient Ascendant

Insights: A new health care order is emerging, fueled by genetics and information
By Rick Mullin
Toward the end of a lunch discussion at the Burrill Personalized Medicine conference in San Francisco late last year, someone suggested that two commercially available cancer drugs be administered as a combination therapy immediately, given the opinion of prominent researchers that they would work better together. The silence that followed was broken by a physician at the table.
“That’s not how science works,” she said.
End of discussion? Well, a drug company researcher at the table nodded his head in agreement with the doctor. But a patient activist, unimpressed, reminded the group that certain individuals can hire their own scientists to do things differently in support of patients who are unwilling to wait for science-according-to-protocol.
Um … could you pass the sugar, please?
Yes, things were a little tense at times, but they were also exciting at the fifth annual two-day conference, hosted by Burrill & Co., the venture capital and merchant banking firm. For one thing, everyone was talking about science. For another, the traditional relationship between doctor, patient, and scientist was changing even as we lunched. We were witnessing the ascendance of the patient.

(CRDNetwork notes: This is a real game changer for the rare disease community as personalized genetic-based medicine increases in acceptance as a transformative technology and catalyst for identifying and diagnosing rare disease in children and adults.)

One might expect this dynamic at a conference on personalized medicine, the field of genetics-driven therapies and preventive measures tailored to individuals. But it is not the health care enterprise’s focus on personalized treatment and counseling alone that empowers the patient. It is also patients’ increased access to information about their personal genomes and the seemingly infinite bank of information on health care, drugs, and science on the Internet.
This convergence seems positive for the most part. Better informed patients ask better questions and can handle more detailed information from doctors. And doctors tend to be more personally involved with patients with whom they can discuss details. Personalized medicine, in turn, will get physicians more involved with the science of developing wellness strategies and therapies for their patients.
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1 thought on “Convergence of Genetic Based Rare Disease Therapies”

  1. Anonymous says:

    This is great news for rare diseases! And kudos to the patient-advocate who was willing to speak out. I hope we see more shift in this direction in the upcoming months as I imagine it will promote faster advances in treatment.

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