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At PMC, I had the urge to go to the lecturn and grab the mike...

Last week I attended the 8th Annual Personalized Medicine Conference at Harvard Medical School in Boston, perhaps the largest gathering of healthcare professionals, researchers and high level reps from academia, gov., the pharmas, and emerging business. These include .. some of the best minds exploring avenues to the best implementation of Personalized Medicine.  Not enough ePatients yet, but that will change.  I took so many notes that, I’ll need some personalized medicine for my right hand.  This was an exceptionally well managed conference that provided a forum for very bright and caring people to share the progress they are making to provide the right medicine, at the right dose, to the right patient, at the right time.

I’ll admit that any cancer patient can lose his objectivity about those who develop therapies that keep you alive.  As I listened to the brilliant presenters describe their struggles and successes in the fields of genetics and genomics with a distinct focus on ‘the patient’, I had the urge to go to the lectern, grab the microphone and speak loudly on behalf of all patients.  I imagined performing like Sally Field during her Oscar winning acceptance speech for Best Actress when she said, “I can’t deny the fact that you like me, right now, you like me”.   These folks really like the patient and will soon embrace the ePatient. For that past several years, I’ve been saying let go of any conspiracy beliefs you may have about Big Bad Pharma and medical and pharmaceutical industries.  Otherwise, bring me the evidence of their mistakes. 

As a close order observer for the past six years and as one who goes well beyond the typical patient (an ePatient) taking personal responsibility for his health and treatment options, I have never seen any evidence of ‘the industry’ bad behavior that is sometimes described in on-line forums.  Given the opportunity to determine what motivates this new generation of physicians, scientists, investigators, geneticists, and informaticists, I think you’d find it’s in their DNA to seek the right answer and to learn from their individual and collective mistakes.  Sorry for the DNA pun.  When your Progression Free Survival (PFS), the end-point in managing a rare incurable blood cancer is directly attributable to a specific targeted therapy developed by a dedicated coterie of researchers and clinicians, you will lose some objectivity.  

The best comment heard at the Personalized Medicine Conference:  The CEO of a particularly successful venture stage firm that had been acquired by a large multinational pharmaceutical firm was asked, what was the most exciting day for you personally? Was it the financial Home Run of the acquisition?  Was it the FDA approval?  He replied, it was seeing the clinical results, seeing how we could help those patients.  I’m sending him an e-mail with an e-hug from all e-Patients.   

This event helped enhance my understanding of the current state of Personalized Medicine.  It enabled me to find new sources of information about new targeted molecular level therapies that manage a variety of particularly difficult blood cancers.   It is no secret that the first steps to becoming an empowered patient require each of us to find reliable information and education.   

One of the most passionate medical professionals committed to the development of a healthy Personalized Medicine industry and Chairman of the PM Conference Organizing Committee is Dr. Raju Kucherlapati, Professor of Genetics and Professor of Medicine at Harvard Medical School.  Had you been given the opportunity to see Raju’s enthusiasm for these proceedings you’d come away with a higher level of confidence that the many wonderful promises of Personalize Medicine are within our near term reach.   This brilliant, indefatigable and modest gentleman exemplifies the kind of conference speakers and talent working on the solutions for which many epatients yearn. 

Some Highlights of the Personalized Medicine Conference:

Genome sequencing is an important tool in identifying and isolating certain mutations as they develop so that they can be targeted by novel agents.  It can assess risk, diagnose disease and stratify patient populations for targeted therapy.  I want to know it can help determine the efficacy of a particular chemo or other therapy.  

Drug developers are using genetic information and genetic markers to develop next generation therapy.

Business Models for using Genetic Information, a fascinating discussion and exploration of business opportunities for new and well-established companies centered on Genetic info.

An exciting discussion about who owns the Intellectual Property (IP) for genetic tests.  No doubt, we’re navigating some uncharted waters here.  Where does the law come into play?  There was an additional session dedicated to discussing the ethical aspects of genome sequencing. 

Some prominent representatives from international circles who are driving Personalized Medicine initiatives gave insight into what’s developing in their home country.

There was an enlightening panel discussion about real world Genetics in Medical Practice.  A particularly important question is how do we get genetic and genomic information from the large centers of excellence healthcare facilities to the smaller regional hospitals?  A solid case for ubiquitous and open access to on line patient records was made.

One of the most controversial questions emerging in next generation healthcare is who pays for molecular level diagnostics?  Also there is an urgent need to get interest groups to educate regulatory and legislative bodies about the importance of personalized medicine.  As a volunteer working with LLS, I am personally helping drive this kind of education to convince lawmakers about the need for parity in insurance coverage for ‘oral chemotherapy” most of which comes from early advances in personalized medicine.  

Some examples of real progress delivering PM solutions were presented.  Two of the most promising developments are a targeted therapy for a subset of melanoma patients and the very positive outcome of research funded by a patient advocacy group the Cystic Fibrosis Foundation.

Over the next few weeks, I’ll update this blog with commentary about some of the presentations to offer some not so common insight into the businesses and technologies behind the development of Personalized Medicine.   Whaddya think?  Is this meaningful and helpful now?

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