The Vision

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  8. Title 8









To Lobby Government (at all levels) for an increase in financial support and to provide access for childhood cancer research and treatments. Only 4% of funding overall goes to childhood cancer research even though it is one of the fastest growing cancer demographics. Statistics state four new drugs have been approved for childhood cancer research in the last thirty years. In most cases adult medications are being used on children at lower doses which have a devastating effect on a childs body. 

The relaxation of restrictions placed upon researchers and doctors in Canada to enable them to run clinical trials here. These trials are essential to gaining an understanding about these cancers and how they can best be treated in children. Top world research specialists  in Oncology/Hemotology are  Canadian, but they need to send their  research and data to other countries (USA, New Zealand and Australia) in order to  have the clinical trials begun on their research models because they are unable to do it here due to strict Canadian Government policies.

Permission from the Federal Governement for researches at the Hospital level to develop and test new and advanced forms of drugs and chemotherapy's specific to Childhood Cancer. Currently, big pharma developes chemotherapy drugs for adult cancers with several hundred being developed in recent years. Very few of these companies develope chemotherapy for Pediatric Cancers as there is minimal financial gain. Developement falls to the hospitals and their resesarcher centres.  The current restrictions from Government have led to very little development of chemtherapy  drugs specifically designed for children in the last thirty years. We need t do better

Lobby Government to permitt the availabliity of pediatric chemotherapies, new trial medications and trial treatments which have been developed outside of Canada but show signs of success in their respective Countries. These should be available to patients in Canada on a per case basis. (As an example: CAR- T CELL treatments availble in the USA. The data supports that this treatment is better than what is currently available to Canadian Children but it is not being permitted to be brought into the Canada )

Support the Hospital for Sick Children's ETANTR/ETMR data bank development as well as their CSF Fluid screening program through the lab of Dr Annie Huang and to build relational partnerships with other data creating brain tumour centres around the world. . 

More financial support directed specifically to cancer research start up study’s which would enable Doctor’s to secure further grants for research funding. Researchers need funding to run trials to prove that their hypothesis has merit before applying for larger research grants. Often though, money available to get these trial projects started are very limited and fall to the clinician to find.
 
Review and overhaul the support policies of OHIP Plus,  the Ontario Drug Benefit Plan and other Provincial/Federal plans that would enable full coverage for the needs of childhood cancer patients across the country. 
 
Seek Government assistance through funding and/or tax credits to help support families in childhood cancer and to review their abilities to handle the financial stresses of being in cancer with a child. (Parking, accommodations, food, transportation, etc) Often parents cannot work while a child is in cancer treatment.
 
Provide more funding for Oncology Physicians and Support staff for wages, training and education , especially to the Children’s Hospitals and research centgres. 
 
Co-ordinate with the hospital networks to help better improve systems of sharing data and information on a City, Province, Country and Global scale.
 
Funding for follow up care and research of data for the survival of patients at markers 5,10,20,30 years from first diagnosis as survival rates increase in some cancers.. 
 
Financial support to CHEO and The Hospital for Sick Children’s Research Programs for ETMR Tumours.
(Dr Donna Johnston and Dr Annie Haung)
 
Create events and programs to work hand in hand with the CHEO team on 4North so that patients/parents will be provided with an environment of support and care from other Oncology families and volunteers.
 
Promote awareness with Neurology team and Neuro Oncology teams in Ottawa/Toronto. (ETMR) Bring awareness to the medical teams involved in brain cancer surgery/diagnosis of the ever changing dynamics of brain tumours and to aid in the identification process from Sick Children’s Hospital with future cases as per Dr. Annie Huangm (Specialist ETMR Tumor: Sick Children’s Hospital) 
 
Come along side of organizations that help support families in Childhood Cancer including Candlelighters, Ronald McDonald House, POGO and others to help promote and fundraise for these charities and to continue to bring awareness to them.