How e-Patients are Learning and Sharing Information about Pre-Approval Therapies

Patient-Centered Technologies for Post-Marketing and Real World Data ResearchFebruary 6, 2014

How e-Patients are Learning and Sharing Information about Pre-Approval Therapies

Brian Loew, CEO, Inspire

[email protected] @teaminspire

www.Inspire.com

Thursday, February 13, 14

mailto:[email protected]


http://www.inspire.com

http://www.inspire.com

Brian Loew, [email protected], @teaminspire www.Inspire.com

Examples from our ovarian, lung, prostate and advanced breast cancer groups:

• “About temsirolimus: Right after my cancer returned 3 months after the completion of the taxol-platinum regimen, my doctor sent me to the U of Penn to enroll in a study...I was delighted to find that it was reducing the size of my tumor, though it never completely eliminated it.”

• “If the resistance to Tarceva is due to the T790M mutation, there are two promising drugs in clinical trials right now. One is from Clovis called CO-1686, the other from AstraZeneca called AZD9291.”

• “Nivolumab 3mg/kg every 2 weeks HAS worked for me one tumor so small no longer measurable. I knew it was working as I just felt better almost immediately.”

Patients are increasingly seeking and sharing information online about drugs before FDA approval




http://www.Inspire.com



More sharing–driven entirely by engaged, insightful patients:

• “The phase 3 trial that is just starting is using Mekinist, which is FDA approved for Melanoma. Your doc should make a case to your insurance to cover this drug for your treatment and start you on it outside of the trial.”

• “There is a drug in prostate cancer that targets CLTA-4 in clinical trials.”

• “When deciding between continuing on anti-PD1 trial or switching to chemotherapy, I think you need to consider at least two things: 1) What is the response rate for the chemotherapy you'd receive as 3rd(?) line treatment? 2) Many of the immunotherapy clinical trials have an exclusion if you've had any prior immunotherapy treatment.”

• “I would try (bazedoxifene) in a heartbeat if current treatment tamoxifen fails and I could get it.”

• “My onc is at the Cleveland Clinic and just offered (Torisel) to me. He gave me the choice of avastin and three other drugs. He thought that temsirolimus would be the best choice along with avastin.”







Discovery







Discovery

When someone recently started a discussion about privacy issues, I got a little concerned that too much privacy might have prevented me from finding what has been the most useful, supportive

group for me.







The “Tarceva Diva,” and her Divas & Dudes

• In Inspire’s Lung Cancer Survivors Support Community, one now-deceased member, “MarieZee100,” began a discussion topic--on her own--to connect people who are or were on Tarceva

• In just her “Tarceva Divas” discussion strings alone, apx. 8,000 posts by members, over apx. 30 months

• Discussed not just Tarceva itself, but new drugs and combination therapies

• Strength of self-organized “sub-community”--MarieZee100 has died of lung cancer, but another member picked up the “Tarceva Diva” mantle, and the discussion topic continues stronger than ever.







A rare disease patient’s story







Discovery, as a community finds itself







Rare disease e-patients’ call to action







Takeaways:

Patients are engaged in seeking and sharing detailed information about pre-approval therapies.

Many patients want to contribute to research.

Technology matters a great deal.

Technology doesn’t matter at all.






Health & Medicine

How e-Patients are Learning and Sharing Information about Pre-Approval Therapies