| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Wednesday, May 20, 2009
Training for Health Care Transition for Youth
Sunday, May 3, 2009
WSJ article on Cancer patients' rights to Drugs
Just the day after we met, the Wall Street Journal had an editorial by Richard Epstein on the need to give cancer patients access to more potential treatments.
Epstein writes that "No one thinks that unapproved cancer drugs should be freely available to patients in the over-the-counter market. Yet once a drug passes Phase I clinical trials -- which test for high toxicity -- why not make it available for general distribution through the NCCN, which has far superior access to specialized medical expertise than the FDA?"
The NCCN is the National Comprehensive Cancer Network. One can imagine a similar set up for many other diseases. Epstein also argues on behalf of off label us of approved drugs.
Epstein writes that "No one thinks that unapproved cancer drugs should be freely available to patients in the over-the-counter market. Yet once a drug passes Phase I clinical trials -- which test for high toxicity -- why not make it available for general distribution through the NCCN, which has far superior access to specialized medical expertise than the FDA?"
The NCCN is the National Comprehensive Cancer Network. One can imagine a similar set up for many other diseases. Epstein also argues on behalf of off label us of approved drugs.
Saturday, May 2, 2009
Welcome to the Advocacy Salon Blog
Hi all,
Welcome!
Recall that we started with this:
Salons
As a means of transformative visioning, Genetic Alliance regularly holds salons, similar to the 17th - 19th century gatherings of intellectuals and other eminent individuals. In our case, individuals are not chosen for their expertise or the expansiveness of their resumes, but for their characters and their reputations as open-minded, curious, and willing to explore all sides of a given issue. Salons are fueled by the mechanism of open space, allowing unfettered thought and discussion; we leave our certitude and intellectual property at the door. Through our conversation, we realize more than any one of us could have done alone. This is our chief aim: transformative knowledge through conversation with others. We have held several of these salons. The salons are an increasingly useful way to practice openness and transformation; dynamic interaction around rigorous topics inevitably leads to disruptive and exciting solutions.
Traditionally, advocacy in the biomedical realm has been limited to support for affected individuals, raising awareness of disease, and promoting research. In this information age, with the tools of social networking, and a need to accelerate basic science’s translation to treatments and services, we have the opportunity to vision, strategize, disrupt and take effective steps toward a collaborative system.
WE welcome your participation in this space - to write or lurk - and to move us all to a new level of transforming the systems which bring us to health, well-being and justice!
Welcome!
Recall that we started with this:
Salons
As a means of transformative visioning, Genetic Alliance regularly holds salons, similar to the 17th - 19th century gatherings of intellectuals and other eminent individuals. In our case, individuals are not chosen for their expertise or the expansiveness of their resumes, but for their characters and their reputations as open-minded, curious, and willing to explore all sides of a given issue. Salons are fueled by the mechanism of open space, allowing unfettered thought and discussion; we leave our certitude and intellectual property at the door. Through our conversation, we realize more than any one of us could have done alone. This is our chief aim: transformative knowledge through conversation with others. We have held several of these salons. The salons are an increasingly useful way to practice openness and transformation; dynamic interaction around rigorous topics inevitably leads to disruptive and exciting solutions.
Traditionally, advocacy in the biomedical realm has been limited to support for affected individuals, raising awareness of disease, and promoting research. In this information age, with the tools of social networking, and a need to accelerate basic science’s translation to treatments and services, we have the opportunity to vision, strategize, disrupt and take effective steps toward a collaborative system.
WE welcome your participation in this space - to write or lurk - and to move us all to a new level of transforming the systems which bring us to health, well-being and justice!
Subscribe to:
Posts (Atom)