CAPN png combined

                                                                                                                                          

October 17, 2018

About the Canadian Association of Paediatric Nephrologists (CAPN)

CAPN is the organization for Canadian medical professionals trained in child and adolescent kidney disease diagnosis and management. We advance knowledge through participation in research studies. We educate through training programs accredited by the Royal College of Physicians of Canada. We advocate for the best clinical practices to treat patients with conditions of the kidneys and urinary tract, enabling them to reach their full potential. We are the Canadian Association of Paediatric Nephrologists. (Photo credit Kyle Pearce "Inukshuk Sunset", https://flic.kr/p/4D4wZv) Creative Commons License.

Canadian research in paediatric nephrology

Canadian pediatric nephrology researchers are world leaders in the investigation of the basic and clinical sciences involving childhood kidney diseases.

National pediatric nephology collaboration

CAPN is working throughout the year to develop initiatives that serve our community. We meet twice a year to discuss scientific, clinical, educational and advocacy issues that are important to the patients we help.

HEALTH RESOURCES

Supporting clinical excellence in the care of Canadian children with kidney disease.

Read more

KIDNEY RESEARCH

Working to advance knowledge of kidney disease and health through clinical and basic science.

Read more

TRAINING

Supporting Canadian Paediatric Nephrology Trainees through education, research and advocacy.

Read more

Remembering Dr. Colin White

Dear CAPN member, 

We wanted CAPN to officially acknowledge the loss of our appreciated colleague and friend Colin.

For many of us, he was more than a colleague and we would like in the name of CAPN to offer our sympathies to his wife Fiona and to his family. We would also like to offer our condolences to the BC Children's Renal team.

Colin was a teacher, a researcher, a physician and as a patient with a deep knowledge of kidney disease, he made significant contributions to the field of pediatric nephrology at home and abroad.

He left us too soon. His obituary follows:

Dr.Colin White for Social MediaIn Memoriam: A Tribute to Dr. Colin Thomas White, M.D.

Dr. Colin Thomas White, Clinical Associate of Pediatrics and a pediatric nephrologist at the University of British Columbia (UBC) and BC Children’s Hospital, died on July 29, 2018 at the age of 50 years. Colin distinguished himself as a passionate and gifted medical educator and as a strong advocate for evidence-guided best clinical care for infants, children and youth with chronic kidney disease. With humility and compassion he engaged with patients and their families and inter-professional care providers locally, nationally and internationally. His career was his life calling, to which he gave so very much and from which he derived immense personal joy. His personal work ethic was considered daunting by many. Throughout his professional journey, he earned the respect, admiration and fondness of the many whose lives were enriched through their relationship with him.

Colin was born in Scotland and grew up in New Brunswick, Canada where he also obtained a BSc degree in Science. After graduating from the University of Ottawa Medical School, he moved to London, Ontario and spent eight years in postgraduate training as an intern, resident and chief resident in pediatric medicine and as a pediatric nephrology subspecialty resident. It was here that he met his life partner, Catherine Fiona Macpherson. They even published a paper together on the anti-proteinuric effects of enalapril and losartan. He was recruited to UBC and BC Children’s Hospital in 2000 by Dr. Morrison Hurley, with whom he developed an important friendship. After three more years of advanced clinical and research training, Colin became a member of the faculty and was promoted to Clinical Associate Professor in 2011.

In Vancouver Colin distinguished himself as a true master of teaching and learning in medicine, working closely with medical students, pediatric residents and nephrology subspecialty trainees. He had a special ability to bring any discussion back to basic principles, often leaping up to a white board to draw images and pathways that left lasting impression on all learners in the room, from medical students to senior faculty members. In his own words, he believed that this is what …allows the clinician to face the unknowns of day to day patient care. The time of day or night never mattered; if there were lessons to be learned from a patient’s care, he would take the time to teach any learners who were present. The weekly nephrology inpatient sit-down rounds became legendary, amongst the residents in particular, and earned the team the “best service of the year” award on more than one occasion. They also selected him for the coveted Laura MacRae award as the best subspecialty resident in pediatrics (2002), the “Rookie-of-the-Year” award (2005), and the “Teacher of the Year” award (2009 and 2017).

In 2004, Colin assumed a leadership role for the dialysis program at BC Children’s Hospital. He was named the Program Director for the UBC subspecialty training program in Pediatric Nephrology in 2007. In addition to guiding the training program through successful re-accreditation cycles, he was active at the national level as an OSCE examiner for the Royal College of Physicians and Surgeons of Canada. He established meaningful and highly valued relationships with the seven Canadian subspecialty residents and 12 international clinical fellows with whom he worked closely as their teacher and mentor. His graduates, now dispersed across Canada and the world (Iowa, Australia, New Zealand, India, Ireland, the Netherlands, Oman, Jordan, Saudi Arabia), created a network of pediatric nephrologists he continued to nourish long after their graduation.

Colin actively and passionately encouraged trainees to get involved in research and pediatric residents to consider a career in pediatric nephrology. He introduced them to the Western Society of Pediatric Research (WSPR),that organizes the largest faculty mentored student and resident annual research meeting in the US. Its pinnacle meeting is held every January in Carmel, CA. His enthusiasm not only saw him actively involved as a WSPR member; he became a member of their Council, culminating with a term as President from 2012-13.

Colin’s involvement with undergraduate medical education at UBC was also remarkable throughout his career as a faculty member. During this period, UBC Medicine expanded, both by increasing student numbers and by adding three new campuses distributed across the province – in Victoria, Prince George and Kelowna. Colin ensured that new faculty from these distributed sites were recruited as course teachers right from the early days –an achievement for which he was lauded. For more than a decade he served as one of the “Block Chairs” and teachers, ensuring in particular that the sections on fluids, electrolytes and the genitourinary system were well taught. He especially enjoyed his introductory lectures on “Evidence-based Medicine” and working with year 4 students during the “Preparation for Clinical Practice” course. He assumed a significant role during the curriculum redevelopment project as UBC prepared to launch a completely revamped “spiral-style” medical school curriculum in 2015. And no surprise, he was an active member of several committees, including the Medical Student Promotion Committee.

Throughout his career, working with patients and their families was always his priority and one from which he derived great pleasure. And he was especially good at it! Though a very private individual, with his most complex patients with chronic kidney disease, he shared a level of empathy that most of us can only aspire to, for he had first-hand experience as a dialysis and kidney transplant patient. He was a true role model for providing interdisciplinary care, embracing the roles and expertise of all members of his team in order to provide optimal patient care. Colin led by example, dedicating the time that was needed with each and every family to ensure that they received all the information they required. He used an honest and direct approach but never rushed the visits. He even incorporated his own psychosocial support on occasion, playfully connecting with a child using bubbles or using his dry humor with youth at the bedside. In 2017 he was recognized in BC as the recipient of the Wilma Crockett Memorial Award, an award given annually to a renal care provider who has made an outstanding contribution to the betterment of renal care in the province.

Being an outstanding clinician was never enough for Colin - he actively searched for innovations in care that found him actively participating with several provincial (BC Renal Agency), National (Canadian Society of Nephrology/CSN) and international (National Kidney Foundation/NKF, World Health Organization and the Clinical Journal of the American Society of Nephrology Editorial Board) professional organizations. He was frequently sought after for his expertise in pediatric chronic kidney disease (CKD) and dialysis (especially anemia management). He developed documents for peritonitis management at BC Children’s Hospital that were adopted by many other Canadian pediatric programs. He was invited to be a member of several working groups to develop clinical practice guidelines. These included the peritoneal dialysis section of the Taskforce on Canadian Dialysis Guidelines, the CSN Practice Committee on anemia in CKD, the Kidney Disease Improving Global Outcomes (KDIGO) Committee on CKD staging and the NKF Kidney Disease Outcomes Quality Initiative (DDOQI) Practice Committee on CKD. He was active as the BC site co-investigator for the NIH-funded Chronic Kidney Disease in Children Study, participating as a co-author for four of their publications.

It was always important to Colin that he seek published evidence to inform his clinical practice. He was the author of 50 peer-reviewed publications and also shared his expertise as an invited speaker at several annual nephrology scientific meetings and served on program committees. I think he would say that his involvement with the annual Fundamentals of Dialysis/Pediatric Dialysis Symposium over many years and his engagement with the International Society of Peritoneal Dialysis (ISPD) were some of the most rewarding of his career highlights. At the 17th ISPD Congress held in Vancouver in 2018, his professional contributions were formally recognized.

Colin was blessed with 25 amazing years with his best friend and life partner, Catherine Fiona Macpherson, RN, PhD. Colin was a passionate and gifted photographer, a devoted Habs fan, and an avid reader of science fiction. He had an eclectic taste in music and an appreciation of a fine single malt scotch. Colin will be missed, but remembered with fond memories, by his many friends and colleagues. It is befitting to end with a quote from a Robert Frost poem, The Road Not Taken, that Colin cited in his acceptance address for the Teaching Award that he received from the UBC pediatric residents in 2017, as a call to learners, including ourselves, to dare to try something different, if not a bit daring:

…. Two roads diverged in a wood and I -

I took the one less travelled by,

And that has made all the difference.

The CAPN executive decided that the lecture at our next AGM meeting, next spring, will be dedicated to him, and will be named the Colin White Lecture.

Many of you inquired if there was a cause you could support in the name of Colin,  and we have learned that BC Children's will create a bursary in Colin’s name for a BC renal fellow to attend the Annual Dialysis Conference. Once we have more information, we  will keep you updated, if you wish to contribute to the bursary individually or a group.

Again our deepest sympathies to his love ones.

Update for Canadian Cystinosis Patients

CAPN has recently been informed that Cystagon will undergo a Health Canada review for approval in Canada, making the drug avialble to Canadian cystinosis patients through regular prescription.  The manufacturer has stated that the market price of Cystagon will be no higher than 1/3 of the cost of Procysbi. We will post updates on the progress of the application as it comes available.

Ongoing advocacy efforts regarding Procysbi and special access restrictions for Cystagon

Many patients and pediatric nephrologists were concerned to hear access to Cystagon through the Health Canada Special Access Program was restricted earlier this year with the approval of Procysbi for marketing in Canada for treatment of infantile nephropathic cystinosis.  Procysbi underwent a common drug review through the Canadian Agency for Drugs and Technologies in Health (CADTH), which recommended funding Procysbi through the Provincial Drug Monitoring Boards, if there was a "significant cost reduction" in the proposed market price.  To date, no province has confirmed that they will fund the higher cost of Procysbi.  Several efforts have been ongoing to address this specific issue of access to medication:

1. CAPN has posted a letter to Health Canada detailing our concerns regarding the ability to lock out a less expensive therapy that is meeting the needs of many patients with nephropathic cystinosis. Since that time, the Health Canada Special Access Program (SAP) program has been very helpful in assisting clinicians throughout the country transition our patients with nephropathic cystinosis to Procysbi. Physicians should be aware that Cystagon is still available through SAP for patients who meet the following criteria:

  • G-tube fed with small tubes
  • Receiving sodium bicarbonate

Patients who do not meet these criteria cannot access Cystagon through SAP because Health Canada has strict regulations which they must abide for fair market competition.

2. Cystagon has never gone through the approval process in Canada. It is important for physicians to know that if we are prescribing a non-Health Canada approved medication i.e: Cystagon, we are liable if there was ever a medical error in the fabrication of the medication.

We encourage clinicians to contact the Health Canada SAP program if they want their patients to be eligible for Cystagon. To our knowledge, no patient has been left without treatment.

CAPN recently was contacted by the new distributor of Cystagon regarding marketing of Cystagon in Canada. Cystagon has been sold to a company who is already working in rare diseases in Canada and there is a will to have Cystagon approved by Health Canada. Approval of Cystagon for marketing in Canada will allow families and physicians to decide which medication is best to control their disease. However, it does not guaranty that the cost of Cystagon will remain lower than Procysbi. We will keep you updated on the situation but it may take time.

In addition, Pediatric Nephrologist Dr. Julian Midgley from Alberta Children's Hospital was featured on a March 10, 2018 online CBC article advocating on this issue and its impact on patient well-being.

CAPN has also joined a consortium of organizations concerned about formulary fairness for children in Canada, led by the Goodman Centre for Pediatric Formulations and the Canadian Paediatric Society. Together, we aim to bring issues affecting equity and access to pediatric medications in Canada to the forefront.

CAPN strongly supports that all patients with infantile cystinosis receive coverage for cystine-depleting agents by all provinces and territories. This is life sustaining therapy. All efforts should be made that the medication is competitively priced and that choices exist that allow concomitant bicarbonate therapy in pre-transplant patients.

The Canadian Childhood Nephrotic Syndrome Project

 CHILDNEPH recruitment centres across Canada

CHILDNEPH recruitment centres across Canada

We are undertaking a unique, national longitudinal cohort study of patients with steroid sensitive nephrotic syndrome and of the treatment practices of physicians caring for these patients. Our study will help us understand the association of nephrotic syndrome treatment variation with relapse rates experienced by patients. All children who present to pediatric nephrology clinics with a clinical diagnosis of nephrotic syndrome are eligible for enrollment. Twelve pediatric nephrology centres in Canada are participating. Talk to your nephrologist if you are interested in joining the study. You can talk to the study team by This email address is being protected from spambots. You need JavaScript enabled to view it. or here to find out more.

@CAPNeph on Twitter

Patient CKD resources

index

The Kidney Twin Chronic Kidney Disease (CKD) tools were developed to help support children and adolescents living with CKD and kidney failure. The modules are available for the young child, older child and adolescent with chronic kidney disease, and contain a Facilitator Guide, Caregiver Guide, the module itself, and activity sheets to reinforce the concepts. The modules are free to use.

Read more

graphic capn 200x 120

 

About the Canadian Association of Paediatric Nephrologists

The Canadian Association of Paediatric Nephrologists is a non-profit professional organization of practicing paediatric kidney specialists in Canada. Our mandate is to promote our specialty, encourage trainees to pursue high standards of clinical, research and educational excellence, to discover and promote research in pediatric kidney health of the highest standard, and above all, to provide exemplary care for our patients living with kidney disease. To find out more, please contact us here.

Copyright 2012-2018 Canadian Association of Paediatric Nephrologists