by Joyce Graff
I was honored to be part of the International Kidney Cancer Coalition (IKCC) conference last week in Amsterdam, the Netherlands.
IKCC brings together representatives of kidney cancer support groups from around the world to network and share ideas. The goal is to improve care and support for people with kidney cancer worldwide. Each country has its own challenges, and it is instructive to hear what others are facing and doing about it. Twenty countries on six continents were represented at this meeting.
The keynote session featured talks by three speakers who helped us understand the global view of cancer in general and kidney cancer in particular. Dr. Peter Boyle (UK/FR) spoke about the “Burden of Cancer: A Social and Economic Challenge. Dr. Anne Merriman (Uganda) told us how personal engagement can make a huge difference, sharing her own experiences with Hospice Africa. Dr. Danny Heng (Canada) shared kidney cancer trends and statistics around the world. Dr. Merriman has been nominated for a Nobel Prize for her work with palliative care throughout Africa.
I chaired a session on Prevention of Kidney Cancer. Kidney cancer is treated most successfully when it is found at an early stage. We are working on this from two directions: (1) research to find biomarkers and (2) raising public awareness of early indicators.
Dr. Kerstin Junker (Germany) described the search for “biomarkers,” substances in blood or urine that might indicate the presence of disease. DNA analysis of tumor tissue can tell us which of four major cell types are found, which can help us decide how best to treat this patient. Much work still needs to be done in this area.
James Brandon (UK) explained the research behind the UK’s “Blood in Pee” campaign, which raises awareness of the importance of reporting to the doctor any blood seen in the urine, even if a small amount only one time, in hopes of identifying early stage kidney or bladder cancer. They field tested the language, and the best ways to approach their target markets, with distinctly different approaches to men than to women. Taking these ideas to another country, one would need to do similar research into the most culturally appropriate ways to approach these topics with consumers.
http://www.cancerresearchuk.org/health-professional/early-diagnosis-activities/be-clear-on-cancer/blood-in-pee-campaign/resources-and-tools
My colleague Michael Herbst from South Africa filed this report:
http://www.cansa.org.za/cansa-at-the-international-kidney-cancer-coalition-conference-april-2014/
Deb Maskens from Canada shared a video which her group has prepared to ask the Canadian Parliament to change their approach to reimbursement for cancer drugs taken by mouth. While hospital infusions are covered, pills are not covered. This is an issue also in the United States. As in Canada, each state or province is addressing it one by one. The video is very powerful and is worth the 2 minutes to watch: http://www.cancertaintyforall.ca/
For more information about this global resource for kidney cancer support groups, please see
htp://www.ikcc.org
IKCC does not directly support patients, but rather with established support groups. If there is no kidney cancer support organization in your country, please contact IKCC for help in putting one together.
These are only a few highlights from our three days together. Additional reports will be coming out, Tweets from the meeting are tagged #IKCC14, and the full report will be published on the IKCC site in May.
References:
Dr. Peter Boyle, http://www.i-pri.org/peter-boyle/
Dr. Anne Merriman, http://www.annemerrimanfoundation.com/bio/
Dr. Danny Heng, https://www.youtube.com/watch?v=mpVLTud8s2k
Blogpost from Lizzie Perdeaux: http://www.bhdsyndrome.org/forum/bhd-research-blog/highlights-from-the-4th-international-kidney-cancer-coalition-conference/
