6th International Kidney Cancer Association Symposium, 6—7 May, 2011, Warsaw
The Kidney Cancer Association
Bill Bro (President of the Kidney Cancer Association)
Ours is a small charity that serves families that are dealing with a loved one’s kidney cancer. The primary focus of our organisation centres on research, education both for medical professionals and for patients, and advocacy on behalf of the needs of patients with the government and with insurance companies.
Our organisation was started in 1990 at the kitchen table of our founder, Eugene P Schoenfeld. Gene was a PhD working in the Medill School of Journalism at Northwestern University when he received the same diagnosis that I did that year – kidney cancer. Gene lamented to his physician that there were no good public sources of information for patients dealing with this condition and his physician challenged him. He said, “Gene, pardon my language, if it bothers you so damn much, why don’t you do something about it?”
The physician’s wife was an attorney and that same week she put the necessary legal structure in place to form the nascent Kidney Cancer Association. Gene ultimately succumbed to the disease and I succeeded him as the organisation’s second Chairman in the mid-1990s.
We’ve gone from four people gathered around Dr Schoenfeld’s modest kitchen table to an organisation that now reaches more than 70,000 people in 102 countries. So we’ve enjoyed tremendous growth through that period of time and we really enjoy being a global organisation, having the opportunity to serve people in so many countries.
Our tax structure in the US is such that individuals have a strong incentive to donate money. This can be subtracted from their taxes at the end of the year, and that provides a substantial incentive for those who have the wherewithal to support the work of charities. Our Board felt strongly because of the good position that we were in in the US that we should branch out and begin helping others in countries where governments didn’t offer the same incentives to individuals to be generous and that has proven to be very worthwhile. We now have our primary publication for patients, it’s about 110 pages in length, titled We Have Kidney Cancer, available in eleven languages.
How important is the internet for the kidney cancer cause?
If we look at this disease condition, different places in the world it would be treated very differently. In the US and in Western Europe this is a disease for which therapeutics are readily available for the treatment of advanced disease; surgical techniques and diagnostic techniques are readily available. But if one were in Africa, the disease would largely go undiagnosed or misdiagnosed and untreated. Would the internet be useful to patients in Africa dealing with kidney cancer? Probably not. But in Western Europe, a good deal of Asia and the US, certainly; electronic communications has become a very efficient way to get medical information.
Dr Schoenfeld was a visionary and put the Kidney Cancer Association on the internet really before anybody knew what it was. But it’s important to add that now, because of the ready availability of information through the internet, there is just as much information that is misinformation or bad information, especially with respect to the treatment of cancer, as there is good information. And it becomes very challenging for patients to stratify this in a useful way. So there is both good and bad in the information we get off the web.
Do you have a list of kidney cancer trials on your site that patients can join?
Yes, and we do this collaboratively by working with different groups that specialise in matching patients with clinical trials. One of the things that we’ve found is a great discouragement to participation in a clinical trial is the patient or a family member having to search for this information independently. Those of us who have a background in medicine understand that the majority of patients probably won’t qualify for a particular trial but that doesn’t mean that he or she won’t qualify for another trial. So patients oftentimes when they’re searching independently become frustrated and give up on the process of searching. By working collaboratively with companies that specialise in matching individuals with clinical trials, we’re able to speed up that process. Either using web-based tools or the telephone they can contact someone who is knowledgeable about trials, describe their condition, provide sufficient medical education for someone to guide them through the process. As long as the practitioner on the other end of the telephone or at the other end of the web chat, typically an oncology nurse, has accurate information regarding the patient’s health status, current and prior treatments, it’s not quite as daunting a task to find a trial that the patient can qualify for.