PLEASE Help 15 Yr. Old Canadian Girl Makayla Puddicombe Battling An Aggressive Brain Tumor
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Our niece Makayla Puddicombe was diagnosed with Gliosarcoma at 13 years of age. Gliosarcoma is an aggressive brain tumor that is extremely rare in children and most commonly found in older adults (50+). In the past year, Makayla has had 3 brain surgeries along with chemo, radiation and re-irradiation therapy treatments as the wonderful Doctors and Surgeons at Sick Kids Hospital in Toronto and Janeway Children's Hospital in St. John's, NFLD attempted to remove the entire tumor but were unable to do so.
As part of her treatments in the past year, Makayla met the criteria to participate in a clinical trial drug study conducted by Novartis Pharmaceuticals Canada Inc. through Sick Kids Hospital in Toronto in which the cost of the trial drug and all related expenses were covered for Makayla and reimbursed by Novartis. However, upon development of another tumor during the study, Makayla no longer met the criteria for the clinical trial and could no longer participate in the study and thus, all support by Novartis was discontinued.
Makayla is now back home in Newfoundland (Conception Bay South Area near St. John's) struggling to recover from her last surgery and re-irradiation two months ago. Her Doctors at Sick Kids Hospital in Toronto have concluded that the only option now for Makayla is to take 2 medications they've prescribed called *Dabrafenib (Tafinlar) and *Trametinib (Mekinist).
(*Both medications are owned by Novartis Pharmaceuticals)
Makayla's mom, Michelle Puddicombe has applied to the Newfoundland Government three times seeking much needed assistance for coverage of these medications as the estimated cost per month will be $16,000 to $20,000. An expense that Makayla and her family could never afford. Although the use of these medications for other cancers has been approved in other provinces such as Ontario, sadly and very disappointingly, Newfoundland Health Ministers Steve Kent and Dr. Larry Alteen have declined coverage of these medications and now Makayla who just turned 15 years old on Nov. 18 and her family are left to fight on their own. (VOCM News Coverage Link Below)
We have contacted both Prime Minister Justin Trudeau and Newfoundland's Premier Dwight Ball requesting their assistance in helping Makayla receive coverage for these medications she requires. We still await a response from Prime Minister Justin Trudeau's office but have received a response from Premier Dwight Ball. Premier Ball has contacted the family and expressed that there is absolutely nothing the Government of Newfoundland can help with now in Makayla's case and that the family should be seeking assistance and support from the pharmaceutical company, Novartis. However, Mr. Ball did express that he would personally assist the family in doing so.
Yesterday (Dec.7th, 2015) we contacted Novartis Pharmaceuticals Canada Inc. Head Office in Dorval, Quebec and presented Makayla's case requesting urgent support for the 2 medications, Dabrafenib and Trametinib (Novartis Products) being prescribed by Sick Kids Doctors on the grounds of the "Compassionate Use" they proudly declare to patients on their website. (Novartis Compassionate Care Link Below)
We further expressed to Novartis that in consideration of Makayla participating in their (Novartis) clinical trial and provided valuable information for Novartis in the progress of their Research and Development, they should be willing to extend their Compassionate Care to help Makayla in exchange for all the help and research information she provided for them. However, despite our efforts and request for help from Novartis, we were advised by Novartis' Medical Information Specialist, Anthony, that their Medical Officer declined our request to provide any support and further advised us that our only option now was to submit a "Physician Appeal" and "Family Appeal" to Novartis.
We submitted an appeal to Novartis yesterday and Makayla's Physician, Dr. Lisa Goodyear from Janeway Children's Hospital will be sending the Physician Appeal as well. We now await responses from Novartis Pharmaceuticals Canada Inc.
PLEASE!!! We NEED Your Support Now In Helping Makayla Receive The Medications She Needs By Signing This Petition And Forwarding It To All Your Family, Friends and Associates via Email, Facebook, LinkedIn, Twitter, Instagram, ETC.
Makayla and her family graciously THANK-YOU for taking the time to read her story and providing your support for this petition!!!
VOCM News Coverage Link ("Girl Battling Brain Tumour Also Fighting Province to Cover Cost of Drugs"):
Novartis Pharmaceuticals "Compassionate Care" Website Links:
In the past year, friends and family have started various fund raising events/campaigns in an effort to help alleviate the financial burden for Makayla and her family through this horrendous journey. They can't express enough their sincere appreciation and thanks to EVERYONE locally and abroad who donated and supported these efforts!!
CBC News Coverage Link ("Big Mary sales providing a big help for teen cancer patient"):
If you wish to make a financial donation in addition to Signing and Supporting this petition to help Makayla, you can please do so by visiting the following GoFundMe Link:
Thank-you and God Bless!!
Today: Rob is counting on you
Rob Rivet needs your help with “Justin Trudeau, NFLD Premier Dwight Ball, Novartis Pharmaceuticals Canada Inc., Novartis Canada President Timothy Maloney: PLEASE Help 15 Yr. Old Canadian Girl Makayla Puddicombe Battling An Aggressive Brain Tumor”. Join Rob and 4,601 supporters today.