Your Voice

Patients, caregivers and patient groups can share their experience and opinions with the Ministry of Health by completing a Your Voice survey.

PharmaCare regularly reviews drugs to decide if they should provide coverage for people enrolled in PharmaCare plans. PharmaCare considers the drug’s safety, how well it works and how expensive it is, among other factors. It usually takes about 15-20 minutes to fill out a survey. See what to expect (with sample survey).

If you are a B.C. resident, you can give input if you:

  • Have the medical condition that the drug would be used for
  • Are an eligible caregiver for someone with that medical condition, or
  • Represent an eligible patient group for B.C. patients with that medical condition

Drugs/devices now being reviewed

Drug or device The drug is for Give input
abrocitinib (TBC)
Information Sheet (PDF)
atopic dermatitis, moderate to severe Patient, caregiver, and patient group survey
August 25, 2021 until midnight, September 22, 2021
romosozumab (Evenity®)
Information Sheet (PDF)
osteoporosis, postmenopausal women Patient, caregiver, and patient group survey
August 25, 2021 until midnight, September 22, 2021
tralokinumab (TBC)
Information Sheet (PDF)
atopic dermatitis in adults Patient, caregiver, and patient group survey
August 25, 2021 until midnight, September 22, 2021
trientine HCl (MAR-Trientine)
Information Sheet (PDF)
Wilson's disease Patient, caregiver, and patient group survey
August 25, 2021 until midnight, September 22, 2021
upadacitinib (Rinvoq™)
Information Sheet (PDF)
atopic dermatitis Patient, caregiver, and patient group survey
August 25, 2021 until midnight, September 22, 2021

Completed review of continuous and flash glucose monitors

Thank you to all who participated in PharmaCare’s review of continuous glucose monitors (CGMs) and flash glucose monitors (FGMs).

Between July and September 2020, Your Voice received an unprecedented number of surveys filled out by patients, caregivers and patient groups.

For the first time, PharmaCare now provides coverage for CGMs. Coverage is available to eligible patients through a Special Authority request. See Diabetes Supplies to learn more.

Preview a sample of the patient, caregiver, or patient group survey.

You will be asked about (or your patient, if you are caregiver, or the patients your group represents):

  • Experience of the disease
  • Experience with other treatments
  • Experience with the drug under review

You do not have to respond to all questions, except those confirming your eligibility, that you have read the relevant drug information sheet, and declaring any conflict of interest.

Note that if you declare a conflict of interest, you will still be able to complete the survey, and your input will be considered.

Your survey answers are stored in a secure government location. The Drug Benefit Council (DBC) reviews your answers, but personal identifiers are removed by authorized employees beforehand. Patients and caregivers don’t need to give their name or address to fill out a patient or caregiver survey. Patient groups must provide a contact name and the address of their main office.

An eligible caregiver is both:

  • A B.C. resident, and
  • A caregiver to someone diagnosed with the specific medical condition(s) or circumstance (the "indication") for which the drug under review would be used

For drug review purposes, a caregiver is a person who provides regular ongoing care to an individual patient. 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., home care worker, practical nurse);
  • Person hired to provide individualized, supplementary care to a person in a hospital or care facility (e.g., hospice, residential care facility)*; or
  • Volunteer who provides ongoing care to a patient either 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. Nurses hired to provide care to individual patients, however, are considered caregivers and can complete a caregiver questionnaire.

To provide input, patient groups must:

  • Represent British Columbia residents diagnosed with the specific medical condition(s) or circumstance (known as an “indication”) for which the drug would be used, and
  • Be registered with the Ministry of Health

For drug review purposes, a patient group is a not-for-profit entity whose primary purpose is to advocate for the patients it represents. Organizations may have other purposes, but patient advocacy must be an ongoing priority.

If you are not sure whether your group qualifies as a patient group, email pim@gov.bc.ca.

Patient groups must register to have input into the drug review process. See the list of registered patient groups.

Not yet registered? Use our registration form.

A

AboutFace CranioFacial Family Society: People living with facial differences, both congenital birth defects, such as cleft lip and palate, hemangioma, apert, etc., or acquired facial disfigurements, such as burn, cancer, accident, etc. and their families.

aHUS Canada/SHUa Canada: Patients living with atypical hemoytic uremic syndrome, and caregivers and their families.

Alzheimer Society of BC: People living with Alzheimer’s disease and other related dementias and their families.

Amyotrophic Lateral Sclerosis Society of British Columbia: People living with and affected by amyotrophic lateral sclerosis (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 British Columbians.

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: British Columbians who have lupus, and their personal lupus networks, including their families, caregivers and friends.

BC Schizophrenia Society: People affected by schizophrenia and psychosis.

BC Schizophrenia Society – Victoria Branch: People with psychotic disorders and their families/caregivers/supporters: schizophrenia, schizoaffective, bi-polar, major depression, first break 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 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 Liver Foundation. Public and patients living with or at risk of liver disease.

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.

Chronic Lymphocytic Leukemia Patient Advocacy Group (CLL PAG). CLL patients and caregivers nationally and internationally.

The Chronic Pain Association of Canada. Members in British Columbia who suffer pain.

Clean Air Coalition of BC. The member organizations represent the interests of persons in BC who are affected by heart (cardiac) and/or lung-related health issues.

CNIB (Canadian National Institute for the Blind). Blind and partially-sighted British Columbians.

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.

J

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 British Columbians affected by chronic kidney disease.

L

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 British Columbia.

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 & Addictions Advisory Committee: Mental health consumers and family members.

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 British Columbians.

Prostate Cancer Support Group Chilliwack: Prostate cancer patients.

Pulmonary Hypertension Association of Canada: Canadians affected by pulmonary hypertension.

Q

QuitNow Services: British Columbian 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. 

Scleroderma Association of BC: Scleroderma patients in BC.

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

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.

Type 1 Together:  Type 1 diabetes. 

U

V

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.

X

Y

Z

 


If you have technical difficulties submitting your survey, contact pim@gov.bc.ca.