BIO2016 and getting Big Pharma to listen to the patient’s voice..

Its hard to believe that a couple of weeks ago BIO2016 was coming to an end. After 5 days in San Francisco my legs were tired, my voice was rough, and I was tired of boxed lunches and eating dinner at crazy irregular times – generally very late. Its a hard life!

I was at the meeting thanks to the nice people at BIO who invited a whole array of patient advocates / disease foundations for the Patient pavilion. Don Gibbons from CIRM did a really nice blog on this and has some photos so you can see Allison Moore from the Hereditary Neuropathy Foundation and I in action. A big thanks to Gautami Inamdar for inviting us.

We used the opportunity to network with companies big and small and find out which ones might have potential therapeutics for Charcot-Marie-Tooth. We also used this as a platform to highlight the upcoming patient centered CMT summit.

Frankly BIO treated all the groups in the patient pavilion like VIPs, we could apply for front row seating to all the key notes, we had our own social event and had a tour of Genentech. This was pretty special, being bused to their site, escorted around a couple of labs, meeting scientists and getting wined and dined. Genentech really rolled out the red carpet. At one point we were in the high throughput screening (HTS) lab and in front of us was an ECHO being used to dispense solutions !  Of course the complete Genentech small molecule collection was also there too, just waiting to be screened in an assay. Many of the patient groups I am sure were thinking, in that 1.5 million or so compounds is a potential treatment for [insert name of their]  disease. Lots of questions were asked here and the scientists involved showed just how passionate they could be about the science. In the social hour afterwards we met several other Genentech employees and heard about what the company was doing. I have to say I know a few friends that work for the company so it was great to learn a bit more about the history behind the company.

After the first day or so we spent time in meetings, attending presentations (mitochondrial diseases stood out here) and walking what seemed long distances around the halls. BIO also gave us the opportunity to give a short presentation on HNF and the research we are involved with and funding.

It was not all rosy though, I happened to meet another rare disease parent at the meeting who has a foundation that has funded some research which had started using an FDA approved drug and shown some promising results in vitro. The parent wanted to meet with someone from the company that marketed the drug and so we went along to their booth. We were met with looks as if we were talking a foreign language. Clearly a huge disconnect with people at this big pharma and rare disease parents/ patient advocates. We went to another company who also has a drug in the same class. Again we were brushed off.. It does not have to be this way. We know from the way Genentech treated us, they listened, they seemed open. It appeared as if some of the companies still have much to learn about the importance of rare diseases.

I also had chance to do a bit more networking with additional rare disease foundations and came away from the meeting thinking what if BIO could organize a much small version of the meeting just focused on Rare diseases and at the same time they brought in some of the big pharma to educate them and build collaborations.. would it work..?







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