January 2004 statement
by Margaret Borwhat, Women’s Cancer Advocacy Network:
With all the recent reporting about conflict of interest (COI) for researchers and clinical trials, NIH employees, and most recently Congress persons whose family members are paid lobbyists on issues central to the members’ interests and financial benefit (see LA Times), most advocates and advocacy organizations look squeaky clean in comparison.
Job security, promotions, prestigious appointments and other intangible forms of COI have yet to be adequately addressed by research institutions and other organizations.
Yet many advocates resort to funding from pharmaceutical companies, which may be construed as a COI because nothing else seems available. Raising funds to support representing patients at the national level is very difficult; most funders want contributions spent in their respective communities. Advocates need to publicize and promote what many of us do in terms of representing the interests of cancer patients at the national level; protecting patients, helping to determine policy, funding distributions, etc.
The benefits from advocates participation have been unrecognized and unfunded especially by the general public. Advocates served on committees and participated in many activities for years before being reimbursed or compensated commensurate with their ‘scientific’ or ‘professional’ counterparts.
Only recently have advocates been provided discounts for attendance at scientific meetings yet this is vital if advocates are to stay informed.
Advocates and advocacy organizations need to collectively promote what we do if we are to obtain funds from unimpeachable sources for these essential activities.
Statement by Margaret Borwhat,
Women’s Cancer Advocacy Network
(sadly Margaret died of breast cancer in 2006)
With all the recent reporting about conflict of interest (COI) for researchers and clinical trials, NIH employees, and most recently Congress persons whose family members are paid lobbyists on issues central to the members’ interests and financial benefit (see LA Times), most advocates and advocacy organizations look squeaky clean in comparison.
Job security, promotions, prestigious appointments and other intangible forms of COI have yet to be adequately addressed by research institutions and other organizations.
Yet many advocates resort to funding from pharmaceutical companies, which may be construed as a COI because nothing else seems available. Raising funds to support representing patients at the national level is very difficult; most funders want contributions spent in their respective communities. Advocates need to publicize and promote what many of us do in terms of representing the interests of cancer patients at the national level; protecting patients, helping to determine policy, funding distributions, etc.
The benefits from advocates participation have been unrecognized and unfunded especially by the general public. Advocates served on committees and participated in many activities for years before being reimbursed or compensated commensurate with their ‘scientific’ or ‘professional’ counterparts.
Only recently have advocates been provided discounts for attendance at scientific meetings yet this is vital if advocates are to stay informed.
Advocates and advocacy organizations need to collectively promote what we do if we are to obtain funds from unimpeachable sources for these essential activities.
Statement by Margaret Borwhat,
Women’s Cancer Advocacy Network
(sadly Margaret died of breast cancer in 2006)
