Crucial time in decisions on Hemlibra access : Decisions from provincial/territorial governments expected in coming weeks

On May 25, 2021, Canadian Blood Services (CBS) released its report on emicizumab (Hemlibra) to the provincial/territorial (P/T) Ministers of Health (except Quebec), recommending eligibility for people with severe hemophilia A. An influential medical group in Quebec has also made a favourable recommendation. The decisions to grant access are now in the hands of P/T governments. Announcements are expected in the coming weeks for both Quebec and the rest of Canada. Now is the last chance to influence the decision!

Send a letter today:

Choose one: 

Rest of Canada letter – English
Rest of Canada letter – French

Updated 06/2021

Quebec letter – English
Quebec letter – French

Updated 03/2021

Adding your voice to ours will make a difference.

On May 25, 2021, Canadian Blood Services (CBS) released its recommendation on emicizumab (Hemlibra) to the provincial/territorial Ministers of Health. CBS recommends that emicizumab be listed on its formulary for patients with severe hemophilia A (FVIII level < 1%) who are candidates for routine prophylaxis to prevent bleeding or reduce the frequency of bleeding episodes. This recommendation is in alignment with the December 23, 2020 recommendation from the Canadian Agency for Drugs and Technologies in Health (CADTH) and advice from the CHS and AHCDC. The final decision rests with the provincial/territorial governments (except Quebec). A similar recommendation is awaiting a decision from the Quebec Minister of Health and Social Services. No timelines for these decisions have been announced. In the meantime, Hemlibra remains available only to patients with inhibitors to FVIII. The CHS requests that the community continue its efforts to urge governments to grant access to this innovative therapy.

 

March 29, 2021 – Medical and patient groups in Quebec and across Canada have united in their rejection of the recommendation by Quebec’s health technology assessment group, INESSS, not to fund Hemlibra, an innovative therapy for severe hemophilia A.

On March 25, all 11 physicians who treat hemophilia in Quebec’s four specialized hemophilia treatment centres (HTCs) signed a letter to the Minister of Health and Social Services which concluded, “For physicians who treat hemophilia patients, this conclusion is contrary to the evidence, to best clinical practice established by national and international guidelines as well as ethical principles of equity and social justice.” The letter was co-signed by the presidents of the Association of Hemophilia Clinic Directors of Canada (AHCDC) and of the Association des médecins hématologues et oncologues du Québec (AMHOQ). Read more: CHS Hemlibra communiqué 29-03-2021

Send a letter in reaction to the INESSS report: 
Quebec letter – English
Quebec letter – French

MARCH 22, 2021 

On March 16, INESSS, the Quebec committee that evaluates new drugs, recommended that Hemlibra not be funded for severe hemophilia A (without inhibitors). CHS/CHSQ maintain the report is seriously flawed and are stepping up advocacy efforts, including a new letter-writing campaign in Quebec. A final decision by Quebec authorities could come any time.

CLICK HERE to read the CHS reaction to the INESSS Hemlibra report.

INESSS recommended to the ministère de la Santé et des Services sociaux (MSSS) that Hemlibra “not be included in the list of products for Quebec’s blood system.”

“We are shocked and dismayed,” said Paul Wilton, president of the CHS. “We have talked to hundreds of people around the world whose lives have been transformed by this new therapy. Reading this report, one has to question the competence and objectivity of INESSS. Their conclusions contradict the scientific evidence presented in their own report. The perspective of patients is entirely misrepresented. The efficacy of current treatments is exaggerated.”

 

In the rest of Canada, Canadian Blood Services (CBS) continues its own evaluation. A decision by the Provincial/Territorial Council of Deputy Ministers is expected this spring. Whether your family is affected by hemophilia A or not, please contact your MLA (MPP, MNA) by letter or phone to request his/her support.

English letter – rest of Canada
French letter – rest of Canada

Hemlibra …

  • was approved as safe and effective for all patients with hemophilia A by Health Canada in August 2019;

  • mimics the action of factor VIII;

  • is very effective in preventing bleeding with a constant level of protection equivalent to about 15% factor VIII;

  • is injected under the skin (not into veins) once a week or less;

  • improves quality of life for patients and their caregivers;

  • is already routinely used to treat severe hemophilia A by over 7,000 people in almost every resource-rich country in the world.

KEY DOCUMENTS