Anyone in the patient advocacy community is well aware of struggles in getting their voices heard by various government (and other) agencies.
Best Medicines Coalition (BMC) may ease those struggles.
BMC is an alliance of national patient advocacy organizations with a shared goal of getting “equitable and consistent access for all Canadians to safe and effective medicines that improve patient outcomes.” In addition to communicating member-driven policy positions, BMC provides advocacy leaders with the focused education and information updates necessary to effectively engage with various agencies and policy makers.
Recently, I talked to the Board of Directors Chair, John Adams about the BMC and some of its efforts to help advocacy leaders. “We are focused on those who formally represent patient organizations, either as staff or volunteers, bringing them together in a comfortable space usually twice a year for a one or two-day day meeting to hear from policy experts about issues of the day and to exchange insights into best practices,” Adams said.
One such issue insight was presented by Adams himself in which he explained the 8 ½ year continuing odyssey the Canadian PKU and Allied Disorders non-profit has endured in trying to get a Health Canada approved drug into public drug plans and access and coverage for patients for the first drug therapy for this rare disorder. Other BMC member organization representatives have presented case studies on topics such as advocacy during election campaigns, taxation of medical marijuana, and advocating for provincial public coverage of specific drugs.
Adams added they have many great speakers at BMC meetings, including Dr. Bryan O’Rourke, President and C.E.O. of the Canadian Agency for Drug and Technologies Health (CADTH), as well as Suzanne McGurn, Executive Officer of Ontario’s Public Drug Programs, regarding the pan-Canadian Pharmaceutical Alliance (pCPA), where she is Board Chair. Often consultants and other experts are invited to meetings to explain policy topics and facilitate discussions.
Providing Advocates with Government Access
The BMC also facilitates involvement of patient advocacy groups with various government departments and agencies, including regarding specific policy consultations. Adams said the BMC has representation on various committees and advisory bodies, including a multi-stakeholder body on drug shortages, CADTH’s original patient liaison forum, and for many Health Canada consultations. In addition, Gail Attara, President and C.E.O. of the Gastrointestinal Society of Canada and past chair of BMC, represents the group on a working committee of the Patented Medicines Price Review Board (PMPRB) looking at proposed changes in its regulations and practices in determining the maximum selling price of drugs in Canada.
Adams himself is on a committee with Health Canada involving changing the labelling rules for self care products including natural health products. “I’ve taken on that latter project. There is an issue with the use of aspartame in the PKU population. This artificial sweetener is particularly toxic to people with PKU.” Adams noted that the latter example is an excellent reason for patient group leaders to join BMC to be part of the larger picture.
Adams said “Recently, at a Health Canada event I did a presentation to the industry people who will have to change their product labels. I had the opportunity to explain what PKU is and why aspartame is the most toxic substance known to man for people with PKU.” Adams noted that his presentation was possible because he is part of BMC “BMC is an umbrella group and it gives you opportunities and exposure to groups that you may otherwise not have any awareness of.”
Member organizations also value the advocacy work that BMC does regarding broad pharmaceutical access issues. “BMC members cite the benefit of being able to contribute to the development of consensus positions on important policy reform areas,” Adams added. Discussion papers and position documents are developed and submitted on key national policy topics, such as national pharmacare and pharmaceutical pricing.
Current BMC members include:
- Alliance for Access to Psychiatric Medications
- Arthritis Consumer Experts
- Asthma Canada
- Better Pharmacare Coalition
- Brain Tumour Foundation of Canada
- Canadian Arthritis Patient Alliance
- Canadian Breast Cancer Network
- Canadian Council of the Blind
- Canadian Epilepsy Alliance
- Canadian Hemophilia Society
- Canadian PKU & Allied Disorders
- Canadian Mental Health Association
- Canadian Psoriasis Network
- Canadian Skin Patient Alliance
- Canadian Society of Intestinal Research
- Canadian Spondylitis Association
- Canadian Treatment Action Council
- Crohn’s and Colitis Canada
- Foundation Fighting Blindness
- Gastrointestinal Society
- Health Coalition of Alberta
- Kidney Cancer Canada
- Lymphoma Canada
- Millions Missing Canada
- Ovarian Cancer Canada
- Parkinson Canada
To see the current list of BMC members, go to https://bestmedicinescoalition.org/members/