As a non-profit organization working on behalf of individuals with
the blood disorder thalassemia, we believe that your recent article “Key
Opinion Leaders: Independent experts or drug representatives in disguise?”
(June 25, 2008) highlights an issue that is of concern to all those
wishing to ensure that patients receive proper care. This fact was
brought home recently to our own thalassemia community when a review of an
important publication concerning the care of this disorder revealed that
some of the information presented was based upon data supplied by the
pharmaceutical industry and was not appropriately designated as such.
Transparency is crucial to those who are working hard to ensure that
patients receive optimal care, whether a physician or a patient advocacy
association. In our own lectures and symposia, we already insist upon
full disclosure of any relevant financial assistance provided to a
presenter from industry, as well as disclosure as to origination of slides
and data. In order to ensure full transparency, we are adopting a policy
of disclosing any industry financial support that we ourselves have
received, whether for general operations or for a specific event.
We firmly believe that the vast majority of doctors and researchers
with which we deal have the best interests of the patients in mind;
however, full disclosures must be presented so that those who receive
information can determine for themselves if there is any reason to
question the information presented.
No one wishes to deny the pharmaceutical industry the opportunity to
make a decent return on what is usually a very significant investment in
the development of drugs. However, they have a moral obligation to place
the best interests of the patient above inappropriately aggressive and
influential marketing concerns. And patient advocacy organizations,
consumer interest associations and medical professionals have a moral
responsibility to monitor them in this area.
Sincerely,
Anthony J. Viola
National President
Cooley's Anemia Foundation
www.cooleysanemia.org
Rapid Response:
Patient Organizations Must Be Vigilant
As a non-profit organization working on behalf of individuals with the blood disorder thalassemia, we believe that your recent article “Key Opinion Leaders: Independent experts or drug representatives in disguise?” (June 25, 2008) highlights an issue that is of concern to all those wishing to ensure that patients receive proper care. This fact was brought home recently to our own thalassemia community when a review of an important publication concerning the care of this disorder revealed that some of the information presented was based upon data supplied by the pharmaceutical industry and was not appropriately designated as such.
Transparency is crucial to those who are working hard to ensure that patients receive optimal care, whether a physician or a patient advocacy association. In our own lectures and symposia, we already insist upon full disclosure of any relevant financial assistance provided to a presenter from industry, as well as disclosure as to origination of slides and data. In order to ensure full transparency, we are adopting a policy of disclosing any industry financial support that we ourselves have received, whether for general operations or for a specific event.
We firmly believe that the vast majority of doctors and researchers with which we deal have the best interests of the patients in mind; however, full disclosures must be presented so that those who receive information can determine for themselves if there is any reason to question the information presented.
No one wishes to deny the pharmaceutical industry the opportunity to make a decent return on what is usually a very significant investment in the development of drugs. However, they have a moral obligation to place the best interests of the patient above inappropriately aggressive and influential marketing concerns. And patient advocacy organizations, consumer interest associations and medical professionals have a moral responsibility to monitor them in this area.
Sincerely,
Anthony J. Viola National President Cooley's Anemia Foundation www.cooleysanemia.org
Competing interests: None declared
Competing interests: No competing interests