New! June 27th, 2018 CAP/ACP Presentation to the
Canadian Blood Services (CBS) Board Meeting
June 27, 2018
The Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP) continues to advocate to improve care for Canadians with porphyria. Currently, patients with porphyria who need to access the only treatment available are having difficulty accessing it (Access to Heme Treatment in Canada 2016). After three presentations to the CBS board (June 22nd, 2017 in Edmonton, December 7th, 2017 in Ottawa , and most recently, June 27th, 2018 in St. John's), it appears that the treatment, Panhematin, will be carried and distributed by CBS. This would make the treatment available to all Canadians!
On July 6th, 2018, Mel Cappe, Chair, Board of Directors, Canadian Blood Services, July 6, 2018 sent the following message:
"We believe Panhematin is an appropriate drug for us to carry. The Provincial and Territorial Blood Liaison Committee has agreed to move forward with a review of this drug using the Canadian Blood Services selection process for plasma protein products as a guide.
The vendor’s submission was recently received, and it has been vetted and deemed appropriate from a medical and scientific standpoint. Knowing the review can take 12 to 18 months to complete, we are committed to moving forward on this and will streamline and accelerate the process wherever possible and appropriate."
Our presentations are here:
Summer Camp for Canadian children with Erythropoietic Protoporphyria
The Canadian Association for Porphyria/Associatio Porphyria/Association Canadienne de Porphyrie is pleased to announce that it has awarded travel grants to two very happy families to attend Camp Sundown, New York, USA.
It’s hard to imagine summer camp without sunshine, but for children with xeroderma pigmentosum (XP) or porphyria — two genetic conditions that cause severe injuries from UV rays — even the smallest amount of sunlight can be dangerous. At Camp Sundown in Craryville, children with these diseases can enjoy a week of swimming, arts and crafts, fishing, field trips, and most importantly, friendships with people just like them.
Camp Sundown website, 2018
We would like to thank those who donated to this summer grant as they understand what attending this camp will mean to families. The CAP/ACP has committed to providing this grant again in 2019.
The 2017 Report Card on Canada's Blood System refers to how "short‐sighted financial considerations have prevented access to a number of blood and plasma‐derived therapies for certain rare conditions. For example: Normosang and Panhematin, red cell‐derived products to treat porphyria, are not distributed via CBS, making access uneven and often impossible. The product is routinely available in Quebec through Héma‐Québec."
Canadian Hemophilia Society, 2017
Thank you to those who participated in the survey: Access to Heme Treatment in Canada. In order to better understand treatment for porphyria, the Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) asked Canadians who have been diagnosed with acute porphyria - Acute Intermittent Porphyria (AIP), Variegate Porphyria (VP), or Hereditary Coproporphyria (HCP) to take 5 - 10 minutes to complete a survey. We received 39 responses which clearly demonstrated that there is unequal access to Normosang and/or Panhematin treatment across Canada.
For those diagnosed with an acute porphyria and told by a physician that they should receive Normosang and/or Panhematin only 50% (8 of 16 patients) were able to access treatment. Although some patients receive timely treatment, half of them suffer through attacks, receiving only supportive care (medication for nausea and pain) in Emergency or as an inpatient as they are not able to receive Normosang and/or Panhematin treatment.
The CAP/ACP asserts that patients with acute porphyria should have access to Normosang and/or Panhematin treatment, as needed, regardless of where they live in Canada. We are advocating for a future where these blood products will be distributed efficiently and equitably, and by so doing, greatly improve the lives of those suffering from acute hepatic porphyria.
The International Congress on Porphyrins and Porphyrias (ICPP) 2017 was held in Bordeaux, France from June 25th to 28th, 2017. Three board members from the Canadian Association for Porphyria/Association Canadienne de Porphyrie attended the congress. We will be sharing new information from the congress soon.
How Can I Help?
"Patient self-organization is important for both mitigating uncertainty and driving progress toward improved treatments and outcomes for rare diseases."