B.C. patients, caregivers and patient groups can complete a Your Voice survey to share their experiences and opinions about the drugs and devices PharmaCare is considering covering. A survey usually takes 15-20 minutes to complete.
PharmaCare regularly reviews drugs to decide whether to cover them. In making a coverage decision, PharmaCare considers a drug’s safety, how well it works, how much it costs, and how it compares to other, similar drugs. Another consideration is feedback provided by people with experience using the product under review and/or with the condition it would treat.
B.C. residents can complete a Your Voice survey if they:
Your Voice surveys gather information about your (or the patient's) experience:
Look at a sample survey for patients, caregivers, or patient groups.
Watch the short Got a Minute video about Your Voice!
Drug or device | Condition | Survey link and dates |
---|---|---|
ferric carboxymaltose (Ferinject®) for iron deficiency anemia (IDA) |
iron deficiency anemia (IDA) in adult and pediatric patients 1 year of age and older |
September 25, 2024 - October 22, 2024 at 11:59 pm |
ferric carboxymaltose (Ferinject®) for iron deficiency (ID) in adult patients with heart failure |
iron deficiency (ID) in adult patients with heart failure (HF) and New York Heart Association (NYHA) class II/III |
September 25, 2024 - October 22, 2024 at 11:59 pm |
ravulizumab (Ultomiris®) |
anti-acetylcholine receptor (AChR) antibody-positive generalized myasthenia gravis (gMG) in adults |
September 25, 2024 - October 22, 2024 at 11:59 pm |
spesolimab (Spevigo®) |
treatment of generalized pustular psoriasis (GPP), including treatment and prevention of flares, in adults and pediatric patients 12 years of age and older |
September 25, 2024 - October 22, 2024 at 11:59 pm |
To take the Your Voice caregiver survey, a person needs to be a B.C. resident and a caregiver to someone diagnosed with the medical condition(s) or circumstance (the "indication") for the drug under review. The caregiver may be a:
*Nurses who care for groups of patients in a hospital are not considered caregivers for this survey. Nurses hired to provide care to individual patients, however, are considered caregivers and can complete a caregiver survey.
To take the Your Voice patient group survey, a patient group must:
If you are not sure whether your group qualifies, send an email to pim@gov.bc.ca. Not registered yet? Use our registration form.
Registered patient groups
AboutFace CranioFacial Family Society: People living with facial differences – including congenital birth defects, such as cleft lip and palate, hemangioma or apert, or acquired facial disfigurements, such as from burn, cancer or accident – and their families
aHUS Canada/SHUa Canada: Patients living with atypical hemolytic uremic syndrome and their caregivers and families
Alliance for Equality of Blind Canadians: Blind, deafblind and partially sighted Canadians
ALS Action Canada: ALS patients and supporters in B.C. and across Canada
Alzheimer Society of BC: People living with Alzheimer’s disease and other related dementias and their families
Amyotrophic Lateral Sclerosis (ALS) Society of British Columbia: People living with and affected by ALS in B.C.
Answering T.T.P. (thrombotic thrombocytopenic purpura) Foundation: TTP patients and supporters
Aplastic Anemia and Myelodysplasia Association of Canada: Persons with aplastic anemia, myelodysplasia and paroxysmal nocturnal hemoglobinuria (PNH)
Arthritis Consumer Experts: People living with arthritis
The Arthritis Society, BC & Yukon Division: People of all ages living with arthritis
ASIC (Access for Sight Impaired Consumers): Blind and partially-sighted people in B.C.
Asthma Canada: Patients with asthma and associated allergies across Canada
BC Association of Pregnancy Outreach Programs: Pregnancy outreach programs supporting marginalized and vulnerable women who are pregnant, post-partum or transitioning into parenting
BC Epilepsy Society: People affected by epilepsy
BC Alliance for Healthy Living Society: Those with chronic disease and at risk of chronic disease
BC Hepatitis Network: People living with and at risk for viral hepatitis infection
BC Lung Association: Patients suffering from lung disease
BC Lupus Society: B.C. residents who have lupus, and their personal networks, including families, caregivers and friends
BC Lymphedema Association: Lymphedema and lipedema patients
BC Schizophrenia Society: People affected by schizophrenia and psychosis
Canadian Alopecia Areata Foundation (CANAAF): Children, teens and adults living with alopecia areata and their supportive others
Canadian Arthritis Patient Alliance: Patients with all forms of arthritis
Canadian Association for Safe Supply: Increasing access and supply to legal, regulated substances of known potency
Canadian Association of People Who Use Drugs (CAPUD): People at risk of overdose, people living with opioid use disorder
Canadian Association of PNH Patients: PNH patients and caregivers
Canadian Association of Psoriasis Patients: People in Canada impacted by psoriasis and psoriatic arthritis
Canadian Breast Cancer Network (CBCN): Canadians affected by breast cancer, including patients, survivors, caregivers and family members
Canadian Cancer Society, BC and Yukon: Cancer patients and their families, in communities across B.C. and the Yukon, trying to prevent cancer and enhance the quality of life of those living with cancer
Canadian Cancer Survivor Network: Cancer patients, survivors, caregivers, family members and other cancer organizations
The Canadian Continence Foundation: Urinary and fecal incontinent patients
Canadian Council of the Blind: Blind and vision-impaired Canadians
Canadian Digestive Health Foundation: Canadians who suffer from digestive disorders of all kinds, the entire spectrum, from constipation to inflammatory bowel disease
Canadian FOP Network: The Canadian FOP Network provides support and education to children and adults living with FOP, raises funds for research, and advocates for access to treatment for patients with FOP
Canadian Hemophilia Society: Canadians with inherited bleeding disorders
Canadian Liver Foundation: Public and patients living with or at risk of liver disease
Canadian MPN Network: Canadians who are diagnosed with myeloproliferative neoplasms
Canadian Neuroendocrine Tumour Society (CNETS): NeuroEndocrine Tumour (NET) cancer patients
Canadian Organization for Rare Disorders: Patients, caregivers, and patient groups affected by rare disorders
Canadian Patient Coalition: Charities and NGOs who represent patients
Canadian PBC Society: PBC patients, caregivers and families
Canadian Pituitary Patient Network: Patients with endocrine disorders
Canadian PKU & Allied Disorders Inc: Families across Canada that have PKU or other rare disorders
Canadian Psoriasis Network: Canadians suffering with psoriatic disease. A national organization
Canadian Pulmonary Fibrosis Foundation: Pulmonary fibrosis patients
Canadian Skin Patient Alliance: Canadian skin patients
The Canadian Society for Mucopolysaccharide & Related Diseases Inc: Individuals and families affected by MPS and related diseases
Canadian Spondylitis Association: All Canadians living with ankylosing spondylitis, psoriatic arthritis, enteropathic arthritis, undifferentiated arthritis, axial spondylitis and juvenile spondylitis
Canadian Treatment Action Council: People living with HIV and co-infected
The Center for Epilepsy and Seizure Education in BC: People affected by epilepsy
Centre for ADHD Awareness, Canada (CADDAC): Those affected by ADHD
CF Get Loud: Cystic fibrosis patients and families
The Chronic Pain Association of Canada: Members in B.C. who suffer pain
Clean Air Coalition of BC: The member organizations represent the interests of persons in B.C. who are affected by heart (cardiac) and/or lung-related health issues
CLL Canada: CLL patients and caregivers nationally and internationally
CNIB (Canadian National Institute for the Blind): Blind and partially-sighted B.C. residents
Comox Valley People in Pain Network Support Group: People living with persistent pain
Consumer Advocare Network: A national network of healthcare consumers organizations and individuals
COPD Canada: Canadians with COPD (chronic obstructive pulmonary disease)
COPD Canada Patient Network: Patients in Canada with COPD
Crohn's and Colitis Canada: People affected by Crohn's disease and ulcerative colitis, two main forms of inflammatory bowel disease (IBD)
Cure SMA Canada: Spinal muscular atrophy patients and caregivers
Cystic Fibrosis Canada: Individuals with cystic fibrosis, their families and caregivers
Diabetes Canada: People living with diabetes
East Vancouver People in Pain Network Support Group: People living with persistent pain
Eczema Society of Canada: Eczema patients and caregivers
FH Canada Patient Network: Patients with familial hypercholesterolemia (FH)
Fighting Blindness Canada: Canadians living with vision loss and blindness
Gastrointestinal Society: Persons with gastrointestinal and liver diseases and disorders
HAE Canada: Hereditary angioedema (HAE) patients
Heart and Stroke Foundation: People afflicted by heart disease and stroke (primary & secondary prevention and treatment)
HeartLife Foundation: Heart failure patients in Canada
Hep C Awareness: Those living with hepatitis C, and their family/friends/caregivers
The Isaac Foundation: Canadian patients affected by rare diseases, including MPS, LAL-D, HPP, Batten Disease, and more
International Federation on Ageing: Older people
Kelowna People in Pain Network Support Group: People living with persistent pain
Kidney Foundation of Canada, BC Branch: 7,000 B.C members and volunteers, and B.C. residents affected by chronic kidney disease
Leukemia and Lymphoma Society of Canada: Blood cancer patients
LHON Canada: Patients with Leber hereditary optic neuropathy
Lupus Canada: People living with lupus and their caregivers, family and friends
Lutheran Senior Citizens' Housing Society: Seniors requiring long-term care in B.C.
Lymphoma Canada: Patients and families affected by lymphoma
Lynn Valley Chronic Pain Support Group: People living with persistent pain
Medicines Access Coalition - BC (MedAccessBC): Patients represented by our member organizations
Mental Health Recovery Partners - South Island: People with schizophrenia, early psychosis, mood disorders
Mental Health Recovery Partners Society - Central Vancouver Island: Friends and family of those living with a mental illness
Migraine Canada: People living with migraines
Mood Disorders Association of British Columbia: Those with mood disorders and other mental illnesses
Multiple Sclerosis Society of Canada, BC & Yukon Division: People with MS, their caregivers, family members and the medical community who work with them
MS Society of Canada, Central Island Chapter: People with MS, their caregivers, family members and the medical community who work with them
MS Society of Canada, South Okanagan/Similkameen Chapter: People with MS, their caregivers, family members and the medical community who work with them
MS Society of Canada, South Vancouver Island Chapter: People with MS, their caregivers, family members and the medical community who work with them
MS Society of Canada, West Kootenay Chapter: People with MS, their caregivers, family members and the medical community who work with them
Muscular Dystrophy Canada: Canadians affected by neuromuscular disorders
Myalgic Encephalomyelitis | Fibromyalgia Society of BC: People living in B.C with Myalgic Encephalomyelitis (ME) (87,000), Long-COVID over 1 year (118,000), and Fibromyalgia (FM) (136,000)
Myeloma Canada: Patients living with multiple myeloma
National Gaucher Foundation of Canada: Canadian Gaucher patients
North Shore Chronic Pain Support Group, under Chronic Pain Association of Canada: People living with pain
Osteoporosis Canada: People living with or at risk of osteoporosis
Obesity Canada: Canadians living with obesity; health professionals and academics with a focus in obesity treatment, prevention and management
PAN (Pacific AIDS Network Society): Community-based organizations addressing HIV, hepatitis C and promoting access to harm reduction
Pacific Hepatitis C Network: People living with Hepatitis C
Pain BC: People living with chronic pain
Parkinson Canada: People living with Parkinson's and caregivers/families
Parkinson Society British Columbia: People living with Parkinson's and caregivers/families
Parkinson Wellness Projects: People with Parkinson's disease and epilepsy
Patient Commando: Independent group amplifying the patient voice for any health condition
Patients Voices Network: Impact BC
Pediatric Cancers Survivors Society of BC: Adult survivors of pediatric cancer
People in Pain Network: People living with persistent pain
Polycystic Kidney Disease (PKD) Foundation of Canada: Patients and their support systems
Positive Living Fraser Valley: People living with HIV/AIDS and Hepatitis C
Positive Living Society of British Columbia: HIV-positive people
Prostate Cancer Support Group Chilliwack: Prostate cancer patients
Pulmonary Hypertension Association of Canada: Canadians affected by pulmonary hypertension
QuitNow: Tobacco users trying to quit
Reaching Out MS Society of Salmon Arm: People with MS
Rett Syndrome Society of BC: Those diagnosed with Rett Syndrome and their families/caregivers
Save Your Skin Foundation: Patients and caregivers
Schizophrenia Society of Canada: People living with schizophrenia, schizo-affective disorder, early psychosis and their family members
Scleroderma Association of BC: Scleroderma patients in B.C.
Scleroderma Society of Canada: Scleroderma patients and their families throughout Canada
Sjogren’s Society of Canada: People with Sjogren’s syndrome and those seeking diagnosis
Soft Bones Canada: All Patients, caregivers and their families across Canada who are affected by the rare metabolic bone disease hypophosphatasia (HPP)
Steveston Chronic Pain Support Group: People living with persistent pain
Stroke Recovery Association of BC: Stroke survivors in the community
The Sumaira Foundation: Patients with neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), and other rare neuroimmune conditions
Thalassemia Foundation of Canada: Thalassemia patients and families
Thyroid Cancer Canada: Canadians that have been affected by thyroid cancer
Trigeminal Neuralgia Association of Canada: People who suffer with trigeminal neuralgia
Tuberous Sclerosis Canada Sclérose Tubéreuse: Support and advocacy for individuals and families living with tuberous sclerosis complex
Tumour Foundation of BC: Patients with neurofibromatosis and their families
Type 1 Together: Type 1 diabetes
Vasculitis Foundation Canada: All vasculitis patients in Canada
Vancouver Acromegaly Support Group: Acromegaly
Vancouver Island Multiple Myeloma Support Group: Myeloma patients
Victoria Chronic Pain Support group: People living with persistent pain
Why Choice Matters: People with mental illnesses and family members
Williams Lake People in Pain Network Support Group: People living with persistent pain
Women's Health Initiative Network: Women with uterine health conditions including fibroids, contraceptive care, bladder and vaginal health concerns
Survey responses are stored in a secure government location. Personal identifiers are removed by authorized employees before the Drug Benefit Council reviews your answers. Patients and caregivers don’t need to give their name or address to complete a survey. Patient groups must provide a contact name and the address of their main office.
If you have technical difficulties submitting your survey, contact pim@gov.bc.ca.
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