New Democrats and advocates call for specialized health clinic for survivors of childhood cancer

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VANCOUVER – Survivors of childhood cancer in B.C. need access to a specialized health clinic to combat the devastating health consequences of treatment for pediatric cancers, say the B.C. New Democrats.

“Due to a lack of financial commitment, families in British Columbia who once fought for their children to overcome cancer have now been forced to fight a battle against the late effects of cancer treatment,” said New Democrat health critic Judy Darcy. “These families should not have to fight alone.”

In support of the Pediatric Cancers Survivorship Society of B.C. and alongside those who are struggling with devastating health outcomes due to past cancer treatment, Darcy is calling on the B.C. government to establish and fully fund a specialized health clinic in Vancouver. The multi-disciplinary clinic could serve up to 3,000 childhood cancer survivors who were once treated at the B.C. Children’s Hospital and who may now be faced with overwhelming and catastrophic health issues.

Darcy notes there is currently no formal program or coordination in the health system for the long-term care of British Columbians who survived childhood cancer.

“Survivors are often unaware of the health risks of childhood cancer treatment, as are many doctors and specialists,” said Darcy. “Since there is no provincial strategy on how to address late effects, we have a moral obligation to take action and ensure the health of childhood cancer survivors is supported to the best of our abilities.

“By creating a specialized multi-disciplinary health clinic in B.C., we could finally provide childhood cancer survivors with the comprehensive level of care they require.”

Carolyn Vacheresse, President of the Pediatric Cancers Survivorship Society of B.C., and mother of a childhood cancer survivor, says the battle with cancer is not over for families whose children experience “late effects” – devastating and sometimes life-threatening health complications due to treatment sought for pediatric cancer. Made up of cancer survivors and their parents, Pediatric Cancers Survivorship Society of B.C. is advocating for a multidisciplinary adult pediatric cancer clinic which would provide services to childhood cancer survivors once they leave B.C. Children’s Hospital. The clinic would also provide long-term health surveillance, counselling, and a registry for childhood survivors.

“Many parents who once made the decision to put their children through chemotherapy and radiation treatment did so with their children’s best interests at heart. While our children’s cancer may be cured, many of them are now left with debilitating physical and mental health issues including organ failure, blindness and Post Traumatic Stress Disorder,” said Vacheresse.

“We need the help of our government and the support of people in B.C. to make sure our children no longer have to suffer. A dedicated clinic in Vancouver could finally provide us with the support our families have been looking for.”

BACKGROUNDER

Survivors of childhood cancer in B.C. need access to a specialized, multidisciplinary health clinic to combat the devastating late effects of treatment sought for pediatric cancers.

What are late effects?

Late effects are often caused by treatments administered to pediatric cancer patients and include surgeries, radiation and chemotherapy. Late effects are more severe for childhood cancer patients because the exposure took place during periods of growth and development. Late effects include: physical complications (second cancers, hormone deficiencies, heart disease); neurological and cognitive complications; psychological complications (anxiety, depression, PTSD); and social disabilities.

What does a late effects multidisciplinary clinic look like?

Survivors of childhood cancer need to be informed of potential health risks associated with late effects, counselled regarding health promotion, and provided with access to specialized health care professionals. The proposed multidisciplinary clinic would take a holistic approach to these patients’ complex needs. It would consist of an oncologist with late effects expertise, a nurse practitioner or GP, as well as other allied health care staff (nurses, social worker, psychologist, and physiotherapist).

Similar models exist

In B.C., the Pacific Adult Congenital Heart (PACH) clinic at St. Paul’s Hospital cares for patients born with heart defects who have reached adulthood and experience late effects. The proposed pediatric cancer survivors’ clinic would take a similar team approach to the PACH clinic, which provides care by pediatric and adult cardiologists and surgeons, specialists and other allied health care staff.

In Ontario, there is the provincial pediatric oncology AfterCare Program. Established in 2001, the AfterCare program ensures systematic follow-up with childhood cancer survivors at regular intervals to monitor late effects and ensure that late effects can be indentified and treated as soon as possible.

The need for outreach and a follow-up registry

Currently, there is no process or program for long-term follow-up for childhood cancer patients in British Columbia, and many are lost in transition to adult care when they “age out” of B.C. Children’s Hospital. Many survivors have not been informed of the occurrence of late effects and both survivors and specialists may be unaware of the health risks. For many years, doctors from B.C. Children’s Hospital have been trying to warn the estimated 3,000 childhood cancer survivors in B.C. about late effects, but a lack of funding and provincial support is preventing those warnings from being delivered.

For more information on late effects: B.C. Medical Journal (Volume 52, Number 10), “The need for long-term follow-up of childhood cancer survivors in British Columbia”.