Support the FH Canada Patient Network
September 15, 2016
I am writing to you on behalf of the FH Canada Patient Network, a not-for-profit organization of patients and families living with familial hypercholesterolemia (FH) and related disorders. I started the organization with my husband, Fritz, who has FH. We held our first patient forum in October 2015 and another in Vancouver in March 2016.
The purpose of this letter is to call your attention to a review posted by the Canadian Agency for Drugs and Technologies in Health on July 20, 2016, recommending alirocumab (Praluent) for heterozygous FH and for “clinical atherosclerotic cardiovascular disease.” We are not, of course, attempting to influence your practice. However, we continue to hear from patients who are unable to control their cholesterol levels despite medications, diet and exercise. Some have had cardiovascular events; all live in fear of future events.
Following our first forum, with the approval of the first PCSK9 last year, some patients (with HeFH) have been prescribed evolocumab (Repatha) and we heard, at our second forum, about dramatic changes in their physical health and quality of life. Unfortunately, those not diagnosed with HeFH who also had uncontrolled LDL and were nonresponsive to or intolerant of statins and/or other medications were unable to access PCSK9, until now.
The FH Canada Patient Network fully endorses that patients, like my husband, who are well managed on statins and/or other medications be maintained on their current regimen. We believe that these constitute the majority of patients with FH and nonFH. However, for those who are at risk with high cholesterol, we are very pleased that CADTH has now included a recommendation of Alirocumab (Praluent) for those with “clinical atherosclerotic cardiovascular disease” at “high risk of cardiovascular events.”
In the coming year, the FH Canada Patient Network will be hosting additional forums for patients and families affected by hypercholesterolemia and hyperlipidemia. We hope that we can count on you to advise your patient population and to support our activities.
Sincerely,
Durhane Wong-Rieger, PhD
Chair, FH Canada Patient Netwo
151 Bloor St W, Suite 600
Toronto, ON M5S 1S4
E: fhcanadapatientnetwork@gmail.com
T: 416-969-7435
W: www.fhpatientcanada.org