International Kidney Cancer Coalition (IKCC) Sponsors First International Kidney Cancer Patient Conference

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IKCC is a cooperative effort to help foster the development of independent kidney cancer advocacy throughout the world while encouraging each country to develop its own kidney cancer advocacy organization that is unique to its local conditions. IKCC feels that only through the development of local support organizations, will kidney cancer patients receive the kind of cancer advocacy that will actually work for them. IKCC feel that no single kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many different cultures.

Atttendees from Nigeria along with Dr. K. Youner and J. Bitkower of ACKC

IKCC feels that no single kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many different cultures.

The International Kidney Cancer Coalition’s first Annual Conference, “Expanding Circles”, took place from September 10-13, 2010 in Frankfurt, Germany.

http://www.drkenbattleskidneycancer.com

IKCC is a cooperative effort to help foster the development of independent kidney cancer advocacy throughout the world while encouraging each country to develop its own kidney cancer advocacy organization that is unique to its local conditions. IKCC feels that only through the development of local support organizations, will kidney cancer patients receive the kind of cancer advocacy that will actually work for them. IKCC feels that no single kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many different cultures.

Present at the meeting were cancer advocates from 5 continents. The countries present represented vastly different cultures, values, and medical delivery systems. IKCC recognizes and respects this diversity and feels that it will become one of its strengths. IKCC is a network of independent kidney cancer patient support groups from around the world. It is patient driven and patient focused. IKCC has a strong presence in North America with Action to Cure Kidney Cancer (ACKC), the Association of Cancer Online Resources (ACOR), and Kidney Cancer Canada (KCC) represented on the IKCC Steering Committee and Cancer Care USA participating in the conference itself. All have been active advocates for kidney cancer survivors. Some of the members of the steering committee are actively battling stage 4 renal cancer (kidney cancer). This gives IKCC a unique perspective as to the needs of people actively fighting metastatic kidney cancer.

The meeting agenda for the Annual Conference was quite comprehensive. IKCC started with a “kidney cancer for ordinary people” session, run by advocates themselves. IKCC feels that the strongest patient advocate is one with a good understanding of kidney cancer. Following this session, the basics of starting a patient advocacy group (PAG) was covered, and we reviewed the steps needed to develop an independent national PAG.

IKCC acknowledged the need for a Code of Conduct that, while recognizing each country’s unique laws, will also follow international standards. IKCC recognizes and follows a completely transparent and ethical Code of Conduct, which can be found on our interim website,http://www.IKCC.org. Among other things, the Code governs our relationship with industry. IKCC requires that all funding for patient advocacy groups be unrestricted, and that there be no influence on IKCC policy by pharmaceutical companies.

Another session stressed the necessity for keeping all patient information secure and totally private, and we heard from a lawyer who specializes in medical and health law about ethical practices for PAGs and how to safeguard patient information.

IKCC heard from PAGs from different countries including India, The Netherlands, Poland and Nigeria. It immediately became clear that there are many cultures with differing value systems with disparate access to medical care. This reinforced IKCC's view that kidney cancer advocacy must come from national kidney cancer PAGs familiar with their own culture. No one organization can understand the challenges of the vastly differing countries around the world. IKCC will help each group to be independent, to grow and flourish within their own environment.

A number of scientific sessions were held where presentations were made by experts in kidney cancer. Contributors included  Dr. Thomas Powles from the UK, Dr. Michael Jewett from Canada, Dr. Eric Jonasch from the US, Dr. Kumar Prabhash from India, and  Doctors Jutta Hubner and  Victor Grunwald from Germany. Topics included new targets and pathways of treatment, upcoming trials, tumor banks, and registries, complementary therapy, dealing with the side effects of the current treatments used for metastatic cancer, and patient participation in clinical research.

With the role of the internet in all aspects of medicine and the emergence of the “e-patient” and “e-doctor”, IKCC had sessions on utilizing the internet to help educate patients and future advocates. The impact of social media was noted as a powerful force for patient advocacy groups.

We finished with a round table discussion of all attendees. The conversation was animated and energizing. IKCC will strive to be a collaboration of kidney cancer organizations on a global level with a goal to improve the lives of kidney cancer patients everywhere. We welcome every organization that has an interest in kidney cancer advocacy and support, and will continue to extend an open invitation to all such groups to become a part of our international network. IKCC also welcome individuals who are motivated to initiate kidney cancer support groups in their own countries.

IKCC intends to be focused yet broad, open to divergent views yet directed, individual yet collaborative. The goal is clear. A collaborative effort toward the betterment of kidney cancer patients worldwide.
 
Kenneth D. Youner MD
IKCC Steering Committee
Action to Cure Kidney Cancer
Medical Director
ken.youner(at)ackc(dot)org

Jay Bitkower
IKCC Steering Committee                                          
Action to Cure Kidney Cancer
President

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Kenneth Youner MD
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