In April and May 2020, 15 families wrote to the BC Health Minister and other political leaders and health officials to outline our concerns with ALS treatment options and care in BC. Here is part of our letter:

ALS Care in British Columbia

The ALS Clinic at GF Strong (the “ALS Clinic”) serves all British Columbians who have ALS. Based on our collective experience we know that the ALS Clinic provides substandard care to people with ALS, as compared to ALS clinics in other provinces and in the United States. In saying this, we point to the following:

1. Physician Staffing: Unlike ALS clinics in other provinces, our ALS Clinic does not have a dedicated full-time neurologist to oversee the ALS Clinic and to provide leadership to drive it forward. Rather, it is staffed with four neurologists who all see ALS patients on a part-time basis. While we appreciate their involvement, part-time care should not be the standard and is not the standard in other provinces.
2. Multi-Disciplinary Services: The ALS Clinic offers certain multi-disciplinary services such as an occupational therapist, a social worker, a speech pathologist and a dietician. Unlike other clinics in Canada, however, it does not offer the services of a respirologist. Thus, people with ALS are left to find their own respirology services.
3. Wait Times: Anyone in BC who is told that they have ALS is sent to the ALS Clinic for confirmation of their diagnosis and to be provided with information about what comes next. The prelude to this appointment is incredibly difficult. The wait time for an appointment to get into the ALS Clinic can be significant (e.g. two to three months). People with ALS in BC can get into ALS clinics in other provinces far faster than they can get into our own ALS Clinic.
4. Location: The ALS Clinic is located in a dreary set of rooms in the basement of GF Strong. For many people, this location heightens the emotional trauma of being diagnosed with ALS and they experience more trauma with each follow-up appointment. In contrast, BC’s Multiple Sclerosis Clinic, Alzheimer’s Clinic, and Huntington’s Disease Clinic are located in a beautiful new and modern building at UBC, the Djavad Mowafaghian Centre for Brain Health.
5. Clinical Trials: Unlike the ALS clinics in many other provinces, including Alberta, Ontario and Quebec, the ALS Clinic does not host clinical trials for experimental therapies. British Columbians with ALS must travel out of province or out of country to participate in these trials and, as you can imagine, travel becomes more and more difficult for people with ALS as the disease progresses.Moreover, because the ALS Clinic does not offer clinical trials, it does not offer hope and is, in essence, a palliative care clinic. The difference in culture / feel between the other ALS clinics that we have attended in Canada and the US (“we will overturn any stone to see if we can help you live”) and our ALS Clinic (“we are here to support you as you progress and die”) has been striking to us.
6. Research: We are not aware of any direct government funding being provided to the ALS Clinic for research, or direct funding being provided to other ALS researchers and research projects in BC.
7. Specialized Testing: Approximately 5% to 10% of people with ALS have “familial” or hereditary ALS (as opposed to sporadic ALS). Encouragingly, there are now some therapies in the clinical trial process that appear to be promising as they relate to familial ALS. However, the ALS Clinic does not test for familial ALS as a matter of course and when it does test, it can take two to three months to obtain the results because the blood samples are sent to Alberta and testing is delayed until there are enough samples to make a “batch”.
8. Access: Patients are not encouraged to directly contact the doctors at the ALS Clinic, other than at their scheduled appointments at the clinic, which can be months apart. At other ALS clinics we have attended in Canada and the US we can phone / email the physicians at any time.
9. Awareness / Information: The ALS Clinic does not have a website and people with ALS and their friends and family struggle to find information about the clinic, its services and how to contact the appropriate people. Once at the clinic, patients are not provided with any information or assistance in finding / enrolling in out of province clinical trials.

And here is the “non-response” we finally received:

From: HLTH HSD HLTH:EX
To: [redacted
Cc: FIN OFFICE FIN:EX
Sent: Friday, June 12, 2020, 5:21:38 p.m. PDT
Subject: Ministry of Health Response – 1163918

Dear Mr. Gowe and Co-signers:

Thank you for your emails dated April 27 and May 21, 2020 regarding Amyotrophic Lateral Sclerosis (ALS). I am responding on behalf of the Honourable Adrian Dix, Minister of Health, and the Honourable Carole James, Minister of Finance. I apologize for the delay in correspondence.

I would like to take this opportunity to acknowledge the considerable challenges those with ALS experience, and recognize these challenges have been compounded by the current COVID-19 pandemic. Thank you for taking the time to share your experience and advocate for the ALS community in BC. The insight and perspectives of British Columbians are invaluable to helping shape health system improvements. Please be assured that the Ministry of Health (the Ministry) is committed to working toward achieving a sustainable health care system that best supports the needs of all British Columbians.

The impact of the COVID-19 British Columbians cannot be overstated. We know that one of the groups of people who struggle most are individuals and their loved ones who are dealing with ALS. To help those with ALS, the province has contributed $1 million to the ALS Society of BC to develop an ALS Centre of Excellence in Vancouver. This Centre will serve patients not only in Vancouver but province-wide through mobile clinics. Please know that those struggling with ALS have not been forgotten as we progress through this difficult time together.

BC has begun the process of re-opening, re-starting, and easing the restrictions introduced in response to the COVID-19 pandemic. Our made-in-BC approach will lift restrictions in phases, putting safety first, by gradually allowing for more social and economic activity, while closely monitoring health information. BC’s Restart Plan is informed by health experts, common sense, and practical decision-making. By moving carefully and deliberately, we can help to keep our curve flat, respond effectively, and protect the health of our most vulnerable.

BC is currently in Phase 2 of the BC Restart Plan and we are seeing a resumption of elective surgeries and regulated health services, the opening of provincial parks for day use, small social gatherings, the re-opening of non-essential businesses, and recalling the legislature for regular sittings. Each phase of the restart plan will be spaced out over intervals of two to four weeks. For more information, I encourage you to visit BC’s Restart Plan webpage here: https://www2.gov.bc.ca/gov/content/safety/emergency-preparedness-response-recovery/covid-19-provincial-support/bc-restart-plan.

With respect to edaravone (Radicava), PharmaCare is the provincial program responsible for providing financial assistance for eligible prescription drugs and designated medical supplies. To ensure our services are sustainable, fair, and effective, the Ministry requires all drugs undergo a rigorous, scientific review process. If the review process determines a drug has therapeutic advantages and cost-effectiveness advantages over established treatments, the Ministry considers adding the drug to the PharmaCare program formulary (a list of drugs eligible for coverage).

The Ministry makes PharmaCare coverage decisions by considering existing PharmaCare policies, programs, priorities and resources, and the evidence-informed recommendations of an independent advisory body called the Drug Benefit Council (the DBC). The DBC’s advice to the Ministry is based upon a review of many considerations, including:  available clinical and pharmacoeconomic evidence; clinical practice and ethical considerations; input from patients, caregivers and patient groups provided through the Ministry’s Your Voice web page; and the recommendations of the national Common Drug Review (CDR).

The Ministry may also participate in the pan-Canadian Pharmaceutical Alliance (pCPA) negotiations with the manufacturer if applicable and consider the outcomes of the pCPA’s negotiation when making a listing decision for the drug. Input from patients and caregivers is invited and considered as part of the DBC’s process. At this time, edaravone (Radicava) is still under review.

The ALS Centre at GF Strong is a trans-disciplinary entity providing clinical services to affected patients and their families from throughout BC staffed by four ALS specialist neurologists, as well as the highly trained ALS Team which includes a nurse coordinator, physical and occupational therapist, speech and language pathologist, dietician, and two social workers. Three major scientific programs are also being conducted at the ALS Centre. To learn more about their clinical services and research activities please visit: https://neurology.med.ubc.ca/programs/amyotrophic-lateral-sclerosis-program/.

The Ministry and the health authorities work collaboratively to ensure patients receive the services and care they require. While the Ministry sets the overall policy for the health system, the health authorities are responsible for the delivery of publicly funded health care services in their jurisdictions. Each health authority has a Patient Care Quality Office (PCQO) that works with patients and their families to identify a reasonable resolution to patient care quality concerns, ensuring they have access to the best information and resources available. As such, concerns regarding the ALS Centre at GF Strong are best directed to the Vancouver Coastal Health PCQO. They may be reached at: 1 877 993-9199 or pcqo@vch.ca.

Thank you again for writing about ALS care in BC. By bringing awareness to this situation and sharing your own personal experiences, you help provide direction in what kinds of changes are necessary to ensure that all British Columbians have access to the best medical care possible. I appreciate the opportunity to respond and hope you find this information useful.

Sincerely,

Thomas Guerrero

Executive Director
Pc: Honourable Carole James, Minister of Finance (FinOffice@gov.bc.ca)

Improvement through every concern.