2018 is even worse than in 2016!
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 in 2016 and 29 responses in 2018. Both surveys clearly demonstrated that there is unequal access to Normosang and/or Panhematin* treatment across Canada. To our dismay, the surveys showed that appropriate access to heme treatment was even worse in 2018!
In 2016, of 16 survey participants who were diagnosed with an acute porphyria and told by a physician that they should receive heme treatment only 50% (8 patients) were able to access treatment as needed. The other 8 patients had no access to heme treatment.
In 2018, of 10 survey participants who were diagnosed with an acute porphyria and told by a physician that they should receive heme treatment only 40% (4 patients) received treatment as needed. Some (4 patients) had limited access to Hemin treatment while 2 patients had no access to heme treatment.
The CAP/ACP asserts that patients with acute porphyria should have access to heme treatment, as needed, regardless of where they live in Canada. We have been advocating that Canadian Blood Services (CBS) distribute heme so that these blood products will be distributed efficiently and equitably, and by so doing, greatly improve the lives of those suffering from acute hepatic porphyria. Our presentations to the CBS Board are here:
*Please note that Health Canada approved Panhematin in 2018 and is now the heme treatment available to Canadian porphyria patients.PANHEMATIN Recordati Rare Diseases Canada Inc Press Release.pdf
Travel Grant 2019: Summer Camp for a Canadian child with
Erythropoietic Protoporphyria (EPP)
The Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) is pleased to announce a Call for Applications for a Travel Grant for a child with Erythropoietic Protoporphyria (EPP) to attend a camp for children with EPP in the summer, 2019. The following camps will be considered (depending upon availability): Camp Discovery, Texas, USA; Camp Sundown, New York, USA; or Mini-Camp (bilingual - French/English), Bordeaux, France.
Complete the application by clicking on the form here:
Value: Maximum CAD$ 2000
Number of Awards: 2 grants
Deadline for Application: April 15, 2019
Complete the application by clicking on the form here:
If you have any questions about the camps or the travel grant, please contact us: firstname.lastname@example.org
Thank you to those who attended the
Patient and Family Member Gatherings
Ottawa - December 7th, 2018
Toronto - December 8th, 2018
It was very nice to gather together!
December 6th, 2018
The Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP) continues to advocate to improve care for Canadians with porphyria. Our Access to Heme Treatment in Canada surveys in 2016 and 2018 clearly show that patients with porphyria who need to access the only treatment available are having difficulty accessing it (Access to Heme Treatment in Canada 2016). President, Wendy Sauvé, will be presenting to the CBS Board on December 6th in Ottawa. The presentation will be livestreamed and, if you are in Ottawa, you are invited to attend the board meeting.
We are very eager to hear how CBS has moved forward with the review process evaluating Panhematin as a drug to be carried. 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
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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