5th International Conference for
Organisations Representing Patients with Kidney Cancer
April 16th – 18th
2015 Morristown, New Jersey
I had the honour to be invited to join the International Kidney Cancer Coalition for their fifth annual International that was held in Morristown New Jersey.
This was my third conference with this inspiring “organisation of organisations” and as a member of their previous Advisory Council (see below) I not only learned a lot but had the chance to network with patients’ advocates from several countries.
As usual, our own Deb Maskens was brilliant as vice chair and host extraordinaire.
This is a brief report on the highlights of this conference.
Some of you may know this, but the IKCC was formally incorporated in the Netherlands as a Non for Profit Organisation in December 2014. The Board members are all old timers with Dr Rachel Giles M.D, a nephrologist-oncologist (seems there are only six in the world) from the Netherlands is Chair, Vice Chair is Deb Maskens and the other Board members are the following:
- Berit Eberhardt from Germany is the Manager of kidney cancer at Das Lebenhaus, the organisation that helped IKCC come to life and become independent.
- Joyce Graff, M.A., is from the USA and founded and oversaw the VHL Family Alliance. She is now with Powerful Patient Inc.
- Michael Herbst, PH.D is from South Africa. After a long career as author, professor and editor, he currently is Head of Health at the Cancer Association of South Africa.
- Anne Wilson from Australia is the CEO and Managing Director of Kidney Health Australia who, since joining IKCC 4 years ago, successfully created a totally new sector in her organisation dedicated to Kidney Cancer.
- Rose Woodward from the UK is a founding member of IKCC and founder of KCSN, the largest and most active support network for people touched by Kidney Cancer in the UK.
The Management Services are handled by Das Wissenshaus with Markus Wartenberg from Germany as Advisor, and Julia Black “who knows everything” (mantra of the Conference) from the UK as Administrative Coordinator.
This is a group of highly gifted and passionate people and you can learn more about IKCC on this link. Pictures are already there and some will be added later.
With this first official Board of Directors, the former Leadership Team and Advisory Council of IKCC have been dissolved and representatives now have the opportunity to become Affiliated Organisations, Associated Individuals or Supporters of the IKCC.
1. FROM AROUND THE WORLD
This 5th edition brought together 45 patient advocate delegates from 20 countries.
From the US who “has is all”, to Ghana where there are no oncologists, the Conference as usual gave us a great perspective of where we are in terms of access to treatments, how kidney cancer is dealt with and how we can share best practices in advocacy.
The focus of the Conference was Latin America and there were representatives from Mexico, Peru, Brazil and Colombia.
Suffice it to say that access in these countries is almost exclusively reserved to the wealthy and the main advocacy technique for people in the public system is hiring a lawyer to “sue the Government”. Incidence of kidney cancer in those countries appears way lower than in the US, Canada and Europe with kidney cancer occupying the 18th or 19th position among all cancers. That being said, 58% to 60% of patients are diagnosed at the metastatic stage. Dr Fabio Shutz (Brazil) commented that “kidney cancer is a disease of developeYashwant Sawantd countries”.
One country that has us realize how very lucky we are is India where an oncologist can see close to a thousand patients a day. Ten kidney cancer patients share an appointment and the challenge is making sure they are fed while on therapy.
Yashwant Sawant from the V Care Foundation in India was happy to report that his organisation was able to provide Sutent to 1 000 patients in collaboration with Pfizer. What is even more admirable is that they were able to provide access in a very timely manner, about 2-3 weeks from prescription!
In China, patients advocates need to make sure they do not do anything that might provoke the Government. Zhenxi Zhong from the Shangaï Roots & Shoots organisation had everyone laughing when she explained what a GONGO was: i.e. “a government organised non-governmental organisation”. It seems such government-led NPOs are not rare in China…
And to conclude this world tour, it is important to salute the fact that in Australia, Board Member Ann Wilson was able to set up Australia’s first Kidney Cancer Group under the auspices of Kidney Health Australia of which she is Managing Director and CEO. Kirren Grennan, a registered nurse who is Project Manager for Kidney Cancer, has just completed an online survey of clinical trials/research protocols for kidney cancer in Australia.
2. MEDICAL SESSIONS
Medical sessions by renowned kidney cancer experts gave us all a good summary of where things are in terms of upcoming treatments with a focus on immuno-therapy (or immuno-oncology) which is not the panacea everyone (especially patients) seem to think it is.
The take home message is that phase III studies will give us a better sense of how much of a performance we should expect from these drugs for kidney cancer, keeping in mind that the costs are going to be very high, side effects tolerable but sometimes life-threatening. The most promising characteristic is that a percentage of responses are seen to last for a long time, even after the drug is stopped.
I will not attempt to summarize those presentations but here are a few notable excerpts from the expert doctors who graced us with their presence.
Our first keynote speaker was Dr Harold Varmus, outgoing Director of the NCI and co-recipient of a Nobel Prize (1989) on the genetic basis of cancer. Dr Varmus stressed the importance of working on a global level when dealing with cancer. Cancer registries and National Care plans are the tools needed to share and move forward.
One interesting figure: the budget of the NCI is $ 5 billion, but has been severely cut in recent years. Dr Varmus “we need to get our budget back in shape”.
- Great quote: “To address the growing international challenge of cancer, our reach should exceed [our] grasp.”
- One interesting statement: “we cannot treat ourselves out of the cancer problem” which is a way of communicating the importance of prevention.
Dr Jonathan Coleman, oncologist (Memorial Sloan Kettering Cancer Center, NY):
- “with 25% of patients being diagnosed at stage 4, kidney cancer is the most deadly urological malignancy”
- “partial nephrectomy patients receive a local anesthetic in the flank and are out of the hospital a day after”
- “35% of patients with a radical nephrectomy will have renal insufficiency eventually”
Dr Ram Srinivasan, oncologist (NCI/NIH Bethesda, Maryland):
- “best treatments for non-clear cell kidney cancer are research protocols”
- “patients with non-clear cell rcc should be referred to specialty centres early”
Dr Janice Dutcher from the Cancer Research Foundation (New-York):
- On immuno-therapy: “It’s rough, but it works!”
- Dr Dutcher gave us a comprehensive update of historical (HD-IL2) and upcoming treatments and research protocols.
- In answer to a question about foreseeable cost of an immunotherapy treatment: A course of Ipilimumab treatment (4 doses) is around $120K and that does not include what is called “maintenance” after treatments. Adding a second drug in combination will drive costs even higher.
Dr. Allan Collins, Nephrologist (Minnesota):
- “the longer you survive, the more kidney function comes into concern”. Kidney function declines for everyone over age 50. When kidney function declines, best thing to do is Control Blood Pressure.
- “After nephrectomy, the remaining kidney recovers 60-70% of total function”
Australian registry study suggests that long-term follow-up should not only be about cancer recurrence but also for CKD (chronic kidney disease).
For other medical speakers you can consult the IKCC 5th Conference Agenda.
3. THE PATIENT’S POINT OF VIEW
Many of the representatives were patients themselves and we had several presentations on patients’ stories.
On day 3, it was quite marvelous to see 2 patients sharing the stage who are both in complete remission after undergoing treatment with Interleukin 2: Dave de Bronkart (the famous e-patient Dave) 8 years NED (no evidence of disease) and Peggy Zuckerman also NED for close to 12 years. Both say they owe their life to the collective wisdom of fellow patients. Both advocate for patient’s participation in their own care, D. de Bronkart through the Society for Participatory Medicine and P. Zuckerman who advocates with various groups and has her own blog: PeggyRCC.com
Dave de Bronkart’s gave a highly entertaining and inspiring keynote lecture which featured a 3-D print of his lung metastases and a couple of 3-D printed figurines of…, e-patient Dave (picture should be up soon on IKCC’s Facebook page).
4. THE GLOBAL PATIENT CHARTER FOR KIDNEY CANCER CARE
The Global Patient Charter for Kidney Cancer Care developed during last year’s Annual Conference in Amsterdam was published in the most prestigious Journal of European Oncology. A million people are living with kidney cancer all over the world and this charter was designed to promote the global need for equity of care and access to expertise for patients throughout the world. If you have not read it, here is the link Global Patient Charter. It is already translated in twelve languages, the latest being Arabic which will be added shortly to the IKCC site. All your ideas on how to disseminate this important document and on how your province or region fares in attaining the standards itemized in the Charter are most welcome.
I have left a lot out as it is hard to summarize 3 intense days as these were. I also don’t have Deb’s proclivity with medical summaries.
I hope this will generate your interest and bring you a larger perspective on the state of kidney cancer throughout the world. I hope to have shared some of my enthusiasm.
One important fact, IKCC fully funds travel and conference attendance for all delegates, so participation is in no way an expense for Kidney Cancer Canada.
Kidney Cancer Canada
April 29, 2015