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.
CAP/ACP presented to the
Canadian Blood Services Board Meeting
December 7, 2017
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). As the treatment is a blood product we supported the application of Recordati in April, 2017 requesting that Canadian Blood Services (CBS) distribute this treatment. This request was refused in June, 2017 by the Provincial Territorial Blood Liaison Committee (PTBLC).
The CAP/ACP has presented at the open board meeting of the CBS on June 22, 2017 and December 7, 2017.
Silvia Marchesin, on behalf of CAP presented our concerns and suggestions for a future collaborative process to the open board meeting of the CBS Board of Directors on June 22nd. Since this presentation, the proposal has been discussed by the PTBLC again in October and November but there has been no further decision.
In order to continue advocating that CBS carry this blood product for Canadian patients with porphyria, Wendy Sauvé (President, CAP) presented to the CBS Open Board Meeting in Ottawa on December 7th, 2017. Her presentation is here: December 2017 Presentation to CBS Board.pptx (2).pdf
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.
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