Canadian Cancer Patient Network Calls on Ministers of Health and Cancer Agencies to Lift the Veil of Secrecy on Committee That May Be Delaying or Restricting Access to New Cancer Drugs for Patients

- CONECTed Shining a Spotlight on the Lack of Transparency When it Comes to Access to Cancer Treatments -

EDMONTON, Oct. 18, 2017 /CNW/ - With federal, provincial, and territorial health ministers meeting in Edmonton later this week, a Canadian cancer patient network is expressing its concern about the lack of transparency in the pan-Canadian review process that formalizes recommendations on the funding of cancer therapies on public drug plans.

The Collective Oncology Network for Exchange, Cancer Care Innovation, Treatment Access and Education (CONECTed) is asking ministers and cancer agencies to explain the fundamental mandate of the Cancer Drug Implementation Advisory Committee (CDIAC) to Canadians and cancer patients, and to reveal all the recommendations it has made on access to new cancer therapies since its inception. 

The Canadian Association of Provincial Cancer Agencies (CAPCA) created CDIAC in May 2016.  However, without public introduction, and working in full secrecy, CONECTed was not aware of the new pan-Canadian committee until April 2017.  It was only recently that CONECTed received a list of CDIAC members, except for the name of a patient representative added to provide the patient perspective.

"On behalf of all cancer patients, CONECTed wants concrete details on how CDIAC has inputted to the cancer drug access review process in Canada," said Barry D. Stein, President of Colorectal Cancer Canada.  "We want to determine if CDIAC has impacted and delayed decisions on access to effective cancer treatments without declaring the reasons for its recommendations, and if opportunities truly exist for meaningful input from knowledgeable patient organizations and their patients," added Mr. Stein.

Over the last several months, CONECTed has written and met with ministers of health, deputy/assistant deputy ministers of health and representatives of CAPCA, to ask basic questions about the role and responsibility of CDIAC.  To date, most of the questions posed by the cancer patient network remain unanswered, such as: 

• What is the mandate of CDIAC?
• What recommendations have been made by CDIAC on cancer drug access, and when?
• Why are CDIAC recommendations not made public, such as other evaluating bodies?
• What are the parameters/guidelines for these recommendations?
• Have any CDIAC recommendations to date changed any drug access outcomes among provincial/territorial cancer agencies?
• How can knowledgeable patient groups/representatives participate to ensure the interests of patients?

"CONECTed believes in the sustainability and affordability of provincial and territorial public drugs plans and systems, as well as equal and timely access to effective treatments to improve patient outcomes," said Mr. Stein.  "However, we are completely against the lack of transparency in undefined bodies that contribute to drug access decisions for patients.  Today, we are demanding that relevant parties unveil the secrecy around the CDIAC, its mandate and its recommendations that may be creating, or have already created, barriers to public access to effective oncology therapies that improve patient outcomes.  Access to effective treatments can mean life or death for cancer patients."

"We have already started to hear rumblings from patient organizations and patients that the CDIAC may have provided recommendations that have resulted in reimbursement decisions that differ from pan-Canadian recommendations and that provide guidance that is not aligned with accepted clinical practice or patient values," said Mr. Stein.  "We are astonished by the complete lack of transparency by the CDIAC and its failure to even reveal their past or present recommendations, let alone the basis upon which these recommendations have been made."

"These recommendations have a profound impact on the lives of cancer patients whose very lives depend on the drugs being evaluated.  The public has a right to be informed what the recommendations are, and the reasons for them," said Mr. Stein.  "Patient groups representing the interests of their patients should be fully engaged in the process, as they are the ones most directly affected by the recommendations.  This is not about any one drug, it is about CDIAC being open and transparent to ensure the best overall evaluative process in the interest of all Canadians and our healthcare system."

Members of the Collective Oncology Network for Exchange, Cancer Care Innovation, Treatment Access and Education include:

Save Your Skin Foundation
Colorectal Cancer Canada
Myeloma Canada
Lung Cancer Canada
Melanoma Network of Canada
Lymphoma Canada

SOURCE Collective Oncology Network for Exchange, Cancer Care Innovation, Treatment Access and Education

or to arrange an interview with CONECTed: Lia Lapaolo, [email protected], [phone]