As a stakeholder in the kidney cancer advocacy and research community, we are writing today to update you on a matter we believe is of serious concern to patients and families impacted by kidney cancer globally.
You may be aware that for several years the Kidney Cancer Association (KCA) has sought to bring to light certain activities of the International Kidney Cancer Coalition (Coalition) – a group whose fundraising and governance practices have raised concerns among some of the most prominent researchers and leaders in the kidney cancer community.
Since its founding several years ago, the Coalition has refused to adhere to even the most basic tenets of transparency and disclosure in terms of its governance and its acceptance of funding from industry – fundamental rules that all credible organizations in the cancer research and advocacy communities must follow as a matter of public trust. When the Coalition was launched in Europe in 2009, our organization was asked to participate. We refused – quite quickly and firmly – because the Coalition declined to provide KCA with audited financial statements.
We have called upon the Coalition repeatedly to disclose its financial statements, but to no avail. To this day, there is no evidence that the Coalition has any proper third-party auditing of its funding practices, despite repeated requests.
The Coalition has hosted five formal annual meetings and has still issued no substantive reports or research contributions nor specific data regarding its funding from prominent pharmaceutical companies, begging the question: What is its real purpose?
In a nutshell, the question remains as to how much money is being provided, how much is being expended, and what safeguards are in place to prevent improper influence by industry on the Coalition’s work. And that’s unacceptable.
In another apparent ethical lapse, Coalition director Deb Maskens proposes to host a January 2016 cancer meeting that coincides with a genitourinary meeting of the American Society of Clinical Oncology (ASCO) in San Francisco. This appears to be a violation of ASCO’s blackout policy, which calls for groups to refrain from gathering at times that conflict with ASCO meetings.
Adding insult to injury, this group appears to have infringed on a KCA trademark – the International Kidney Cancer Congress, or IKCC® – in performance of its activities.
The Coalition just can’t seem to understand the importance of proper ethics in its day-to-day operation. What it all adds up to is an ongoing history of uncooperative and frankly, harmful, behavior.
With its refusal to take the most basic step of accountability—financial transparency—the Coalition puts cancer patients and families at risk by possibly exposing them to various kinds of improper influence by industry, while at the same time flouting the conventions and norms of the cancer community. Without any of the usual safeguards and firewalls that are applied when industry provides monetary support for not-for-profit conferences, patients and families are placed in a vulnerable position. It’s that simple.
We believe strongly that with its lack of transparency, the Coalition has opened a huge door through which corporate influence can march unimpeded. This is a very bad precedent for all of us who are trying to serve kidney cancer patients and their families in an ethical and responsible manner.
We invite you to read a more comprehensive news story about the Coalition’s activities, which will be posted on our website in 2016.
Please consider contacting the Coalition directly to protest its possibly unethical practices. We believe this will send a strong signal to the cancer research and advocacy communities in general, and the kidney cancer community in particular, that financial transparency is a must when it comes to governance and fundraising.
Contact information for the Coalition follows:
Christopher G. Wood, M.D., Chair
Paula E. Bowen, Chair Emerita
Bill Bro, Chief Executive Officer
Carolyn Konosky, Co-Chief Executive Officer