Your Voice
Last updated: November 22, 2023
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:
- Have the medical condition the drug would treat, or
- Are a caregiver for someone with the condition the drug would treat, or
- Represent a patient group for B.C. patients with the condition the drug would treat
Your Voice surveys gather information about your (or the patient's) experience:
- With the condition
- With treatments for the condition
- With the drug under review
Look at a sample survey for patients, caregivers, or patient groups.
Watch the short Got a Minute video about Your Voice!
Drugs/devices now being reviewed by BC PharmaCare
Drug or device | Condition | Survey link and dates |
---|---|---|
nirmatrelvir-ritonavir (Paxlovid™) |
mild-to-moderate COVID-19 in adults at high risk for progression to severe COVID-19 |
nirmatrelvir-ritonavir (Paxlovid™) November 22, 2023 - December 19, 2023 at 11:59 pm |
metreleptin (Myalepta®) |
for leptin deficiency in lipodystrophy |
November 22, 2023 - December 19, 2023 at 11:59 pm |
fidanacogene elaparvovec (TBC) |
moderately severe to severe hemophilia B |
fidanacogene elaparvovec (TBC) November 22, 2023 - December 19, 2023 at 11:59 pm |
belumosudil (Rezurock®) |
chronic graft-versus-host disease (cGVHD) |
November 22, 2023 - December 19, 2023 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:
- Family member (e.g., child, parent, niece, nephew)
- Person hired to provide care in the patient’s home (e.g., homecare worker, practical nurse)
- Person hired to provide individualized, supplementary care to a person in a hospital or care facility (e.g., hospice, long-term care facility)*
- Volunteer who provides ongoing care to a patient at home or in a hospital or care facility (e.g., a volunteer hospice worker)
*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:
- Represent B.C. residents diagnosed with the medical condition(s) or circumstance (the “indication”) for the drug under review, and
- Be registered with the BC Ministry of Health, and
- Be a not-for-profit group whose primary purpose is to advocate for the patients it represents.
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
A
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
B
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 Society: Those living with hepatitis C, and their family/friends/caregivers
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 Schizophrenia Society: People affected by schizophrenia and psychosis
C
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 PHN Patients: PHN Patients
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 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
D
Diabetes Canada: People living with diabetes
E
East Vancouver People in Pain Network Support Group: People living with persistent pain
Eczema Society of Canada: Eczema patients and caregivers
F
FH Canada Patient Network: Patients with familial hypercholesterolemia (FH)
Fighting Blindness Canada: Canadians living with vision loss and blindness
G
Gastrointestinal Society: Persons with gastrointestinal and liver diseases and disorders
H
HAE Canada: Hereditary angioedema (HAE) patients
HeadWay Victoria Epilepsy & Parkinson's Centre: People with Parkinson's disease and epilepsy
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
HS Aware: Patients, families and caregivers
I
The Isaac Foundation: Canadian patients affected by rare diseases, including MPS, LAL-D, HPP, Batten Disease, and more
K
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
L
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
M
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, Prince George 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
Myeloma Canada: Patients living with multiple myeloma
N
National Gaucher Foundation of Canada: Canadian Gaucher patients
North Shore Chronic Pain Support Group, under Chronic Pain Association of Canada: People living with pain
O
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
P
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
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
Q
QuitNow: Tobacco users trying to quit
R
Reaching Out MS Society of Salmon Arm: People with MS
Rett Syndrome Society of BC: Those diagnosed with Rett Syndrome and their families/caregivers
S
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
T
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
V
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
W
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.