From March 11-13, kidney cancer organizations from around the world met in Rome, Italy to discuss shared issues and work towards solutions on a global level. As a member of the IKCC (International Kidney Cancer Coalition), Kidney Cancer Canada was represented by Joan Basiuk RN (who gave two presentations including “Kidney Cancer 101” ), Nicole Giroux from L’Association canadienne du cancer du rein, and Deb Maskens who is a Steering Committee member of the IKCC.
We came to Rome to share our information and ideas with others, and learn from groups around the world where patients are facing similar issues with kidney cancer. The following provides just a few highlights from the conference:
Participants from around the world included Australia, Ghana, South Africa, India, U.K, U.S, Germany, Italy, Finland along with other international leading cancer organizations such as Rare Cancers Europe and HTAi (Health Technology Assessment International) among others.
We heard a very wide range of experiences with kidney cancer advocacy. Here are some brief highlights:
In Ghana, film star Juliet Ibrahim has recently started her own foundation to support patients with kidney cancer and kidney disease throughout Africa. We were all inspired by Juliet, her dedicated family, and her amazing video:
Youtube link: http://youtu.be/MrP8p4OmtLE
Kidney cancer patients in Australia are now supported by Kidney Health Australia, an organization that previously was focused solely on chronic kidney disease, dialysis and transplantation. Kidney Health Australia is now actively involved in advocacy and support for patients with kidney cancer: http://www.kidneycancer.org.au/
We heard that the financial crisis in Europe is having (or will be having) a direct effect on reimbursement for kidney cancer therapies. In the U.K, kidney cancer advocates fought for the “cancer drugs fund” in their most recent election. Consequently kidney cancer patients have access to multiple lines of therapy. In Germany, where until now all drugs have been reimbursed upon European approval, a new Health Technology Assessment process is now underway. (Canadians were heard to mutter words to the effect of: “welcome to our world…” Through our work with pCODR (pan-Canadian Oncology Drug Review) and l’INESSS (Quebec), we are already well familiar with HTA and the role patient advocates can play.
Experts, patient advocates, and patients from India presented on the unique challenges of treating kidney cancer in the developing world. We heard staggering statistics:
- 1 million new cases of cancer are diagnosed every year in India
- an oncologist will see 80-100 patients per day
- while 15% of Indians are very rich and can afford treatment anywhere, the middle class (30% of the Indian population) equals the entire population of the United States in numbers. Unfortunately the 55% representing the very poor usually have no access to treatment and indeed their biggest concern is accessing their next meal. The strategy for this population continues to focus on prevention, but access programs are available and charities such as VCare have been established to help patients and their families. http://www.vcarecancer.org/
Expert speakers from Germany, Italy, India, the Netherlands, the UK, and Canada spoke of the tremendous changes in kidney cancer care over the past 5 years, and yet the need to push further. Recurring topics included:
- the importance of clinical trials in all parts of the world (including how to dispel the myths of “guinea pig” patients vs access to advanced care)
- the importance of Centres of Excellence and physician experience with kidney cancer specifically. In France, new legislation will specify which urologists can treat kidney cancer (based upon volume of cases). In Germany, patients are encouraged to seek multi-disciplinary care where patients can be considered for all treatment modalities
- the significance of appropriate side-effect management and “adherence” so that patients can stay on each therapy for as long as possible before switching treatment. Good discussion about “what is progression?”
On behalf of Canada, Joan Basiuk and I presented our recent Kidney Cancer Survivorship study results representing over 320 Canadians who were diagnosed at stages 1-3 and the urologists who treat these patients. To the best of our knowledge, ours is the only patient-based research in the early-stage kidney cancer population. Thank you to all who made this research possible. We are proud to represent you.
A conference report from the IKCC meeting will be available in the coming weeks. In the meantime, we hope that this update will convey the feeling in Rome: that we are not alone — and that we can work together collaboratively and openly to fight this disease around the world.
Thank you to our expert medical speakers Dr. Cora Sternberg, Dr. Sergio Bracarda, Dr. Micheal Staehler, Dr. Purvish Parikh, Dr. Rachel Giles, and to the patients and caregivers who inspire them.