Thought you might be interested in this testimony given in late March to a subcommittee of the House Committee on Appropriations by Sharon Terry, a friend and personal mentor. She is living proof of what a "citizen scientist" can accomplish. And what a patient advocacy organization can do to advance research. You can read more about her work and the role of patient advocacy organizations here in this seminal piece of reporting in Wired Magazine: www.wired.com/wired/archive/9.09/disease.html, still relevant 5 years later. If you really want to get into some deep reading on the subject, read this: http://www.acor.org/e-patients/e-Patients_White_Paper.pdf
With healthcare reform on everybodyÃ¢â‚¬â„¢s lips, her stance on collaboration is worth heeding. Terry writes, Ã¢â‚¬Å“It is becoming increasingly clear that the transformation of basic science to services, which so many of us seek, will require deep and meaningful collaboration. This vision of a [common goal] would necessarily include funds to build adequate infrastructure, provide resources, and create and support networks for all disease-specific interests to systematically address their needsÃ¢â‚¬â€e.g. to electronically aggregate disease-specific natural history data, share methods for establishing best practices for standards of care, and build shared technology resources."
The points she makes about the need for collaboration are especially true about preeclampsia -- a multi-systemic disorder that has the potential to cross many currently siloed medical disciplines. We are fairly certain that its cause will never link back to a single gene mutation. Dr. Ken Ward says, "Preeclampsia is likely the product of hundreds of variable genes acting together to push a womanÃ¢â‚¬â„¢s pregnancy, little by little, into complicationsÃ¢â‚¬Â -- a quote out of a 2-part article in two of our recent newsletters http://www.preeclampsia.org/newsletter.asp
But back to Ms. Terry's testimony. Ã¢â‚¬Å“Biology is systems based,Ã¢â‚¬Â she writes. Ã¢â‚¬Å“Prior to the genomic age in which we work, perhaps it made sense to study diseases based on an organ, or location within the body. However, since sequencing the human genome, we know that there are gene families, pathways, and other more effective ways to understand disease. There are many examples of treatments and cures for diseases coming from an unexpected direction.Ã¢â‚¬Â It is of special note that the biomarkers that have set off the industryÃ¢â‚¬â„¢s current race for preeclampsia diagnostics came from a cancer researcherÃ¢â‚¬â„¢s Ã¢â‚¬Å“out of left fieldÃ¢â‚¬Â discovery.
Ms. Terry also argues that Ã¢â‚¬Å“the health literacy and education needs of the nation will increase, and adequate resources should be put toward health professional and consumer education to enable empowered decision-making.Ã¢â‚¬Â Hmmm...sounds an awful lot like what we do. I donÃ¢â‚¬â„¢t think our mission is going away anytime soon.
The entire testimony can be found here: http://www.geneticalliance.org/ksc_assets/publicpolicy/geneticalliancehouse_44747b8.pdf
Feel free to add your comments.