Parkinson’s disease (PD) is a progressive neurodegenerative disorder that affects motor control, with over 17,500 British Columbians currently living with the condition (Ministry of Health, 2022/23). As our population ages, this number will continue to rise. Although complex, PD is one of the most treatable neurological disorders. With expert care and appropriate therapies, individuals can manage the disease, significantly reducing the risk of falls, hospitalizations, and long-term care placement. Many well-managed patients are able to maintain their independence for years.
However, access to timely treatment remains a challenge. Long waitlists often delay essential care, leading to unnecessary disease progression. Even after receiving care, many healthcare providers lack the specialized knowledge required for Parkinson’s management. This can result in inadequate treatment in emergency rooms, hospitals, and care facilities. For those with advanced Parkinson’s, therapeutic options are limited, and the available care often results in costly complex care placements.
At Parkinson Society British Columbia, we advocate for improved patient outcomes through education and the development of a provincial strategy that ensures timely, knowledgeable, and effective care. We believe that by working together, we can create lasting change for the Parkinson’s community.
Background Information
Deep Brain Stimulation (DBS) is a life-changing surgical treatment for people with advanced Parkinson’s disease whose symptoms are no longer controlled by medication. In British Columbia (BC), access to this crucial surgery has historically been limited, with wait times as long as five years due to the province’s shortage of functional neurosurgeons.
Although the BC Ministry of Health increased the number of DBS surgeries in 2019, the waitlist remained lengthy due to the overwhelming demand on Dr. Christopher Honey, the province’s only neurosurgeon qualified to perform the procedure. Some patients waited up to four years just for an initial assessment. Compared to other provinces like Saskatchewan and Alberta, which have multiple neurosurgeons and much shorter wait times, BC lagged behind in providing timely care.
In May 2023, following sustained advocacy from Parkinson Society British Columbia and the Parkinson’s community, the Ministry of Health announced the hiring of a second neurosurgeon, Dr. Stefan Lang. Dr. Lang’s recruitment is a crucial step toward reducing wait times and improving access to DBS for patients across the province. This appointment fulfills a commitment made by Health Minister Adrian Dix in 2019 to increase surgical capacity and demonstrates the power of patient-driven advocacy.
The addition of Dr. Lang brings new hope to those who have waited years for this procedure. As more British Columbians develop advanced Parkinson’s, timely access to DBS will not only improve patient outcomes but also reduce the burden on long-term care and hospital systems. Parkinson Society BC remains committed to ensuring that all patients have the opportunity to receive this life-changing surgery without undue delay.
How does Deep Brain Stimulation work?
In summary, there are a number of medical conditions where symptoms in the body occur because of an abnormal activity of the brain. Deep Brain Stimulation (or DBS) is a way of “turning off” a small area of the brain. It involves placing a small platinum electrode or wire into the abnormal area of the brain. Instead of destroying the area (like we used to do), we use high frequency electrical stimulation to “turn it off”.
The electrode is connected by a subcutaneous wire to a pacemaker which sits under the skin, usually in the chest. When electrical pulses are produced by the pacemaker and sent to the tip of the electrode, the brain cells in the region of the electrode are “turned off”. The pacemaker can then be adjusted to maximize the benefits (turning off the malfunctioning area) and minimize the side effects (turning off adjacent important areas). That is the greatest strength of DBS – it can be adjusted to maximally benefit an individual patient and if there are unwanted side effects, it can be turned down.
Patients with Parkinson’s disease have areas of their brain that are overactive and a DBS electrode can be placed in those areas to correct the brain activity. This may be a confusing concept for some because everyone has been told that Parkinson’s disease is due to a loss of the dopamine brain cell. Loss of this cell can result in overactivity (or underactivity) depending on whether the dopamine cell was working as a stimulating or inhibiting cell.
Who makes a good candidate for Deep Brain Stimulation?
At present, the procedure is used only for patients whose symptoms cannot be adequately controlled with medications. If you are doing well on your medications, you cannot have the surgery.
Neurosurgeons and specialists will be looking for three motor symptoms that do not respond to optimal medications in order to determine if an individual is a good candidate for DBS:
- Motor fluctuations
- Dyskinesia
- Tremor
Who is a poor candidate for Deep Brain Stimulation?
- Those with a diagnosis of an atypical parkinsonian syndrome (eg, progressive supranuclear palsy, multiple system atrophy, dementia with Lewy bodies, corticobasal degeneration, or vascular parkinsonism). These people are often referred for DBS because of poor response to medical therapies but, unfortunately, typically do not respond well to the surgery.
- People with Parkinson’s disease whose primary goals are to improve speech, respiratory and pharyngeal control, postural instability (history of falling), and freezing. Several long-term studies have shown that these dopaminergic-resistant symptoms continue to progress despite changes in stimulation parameters and improvement of other motor symptoms, such as tremor, rigidity, and bradykinesia.
- People with more than mild cognitive dysfunction, active psychiatric disease, dementia or significant cognitive impairment. This is mostly due to reports of cognition in Parkinson disease worsening irreversibly after deep brain stimulation surgery in patients with pre-existing cognitive impairment. Most centres use detailed neuropsychological testing to screen for dementia.
What are the benefits of Deep Brain Stimulation?
The benefits of DBS are directly related to the surgical target. Targeting the thalamus will reduce tremor by approximately 80-100%. Targeting the pallidum will reduce dyskinesia by approximately 80-100%. Targeting the subthalamic nucleus will reduce motor fluctuations. The details are best reviewed with your neurosurgeon and, of course, vary from patient to patient.
DBS does not improve the non-motor symptoms of Parkinson’s disease. Non-motor symptoms include but are not limited to dementia, depression, loss of smell, constipation, bladder dysfunction, imbalance (this is complicated and can be improved in some), impulse control disorders (also very complicated and can potential be improved), and REM sleep disorders.
While the electrodes in the brain will stay forever, the pacemaker will eventually run out of power and need to be changed in approximately 3 years (range 2-7 years). The effects or benefits of the DBS will continue forever, but new symptoms may develop that are not controlled by the DBS. For example, if a patient develops dementia years after the DBS surgery, the device will not be able to help this. The patient’s quality of life will then deteriorate because of the new dementia, not because the DBS stopped working.
Media Coverage
Press
- Promised Parkinson’s surgery sparks hope for Salmon Arm woman, BC Local News, April 2, 2019 [read]
- Action plan to provide faster care for people with Parkinson’s, Ministry of Health, BC Government, February 5, 2019 [read]
- People with Parkinson’s disease set to receive better deep brain stimulation access, Global BC, February 5, 2019 [read] [watch]
- Province announces more access to deep brain stimulation treatment for Parkinson’s, CBC News, February 5, 2019 [read]
- ‘It’s inhumane’: B.C. Parkinson’s patients frustrated with long waits for life-changing surgery, CBC, Oct 29, 2018 [read]
- Larry Gifford: Behind the Parkinson patient viral video, Global BC, October 15, 2018 [read]
Videos
- Turning a Deep Brain Stimulation Device Off and On: https://youtu.be/34XP72FuvnQ
- Deep Brain Stimulation – Terry Hume and Tom Shypitka (MLA): https://youtu.be/1RblYkK1CAw
Quotes from the Community
“I was diagnosed with Parkinson’s disease when I was 49 years old at the height of my teaching career. Life with my family was going well, and I had two wonderful children. I was absolutely blind-sided by the diagnosis, and I don’t even remember driving home. My symptoms progressed rapidly and were not typical, so I had to step away from a job I loved. At this stage in the progression of the disease, I am looking for relief from the incredible suffering I have to ensure every evening. My hope is that this surgery will allow me to capture as many good years as I can and make the most of what I have left. I have two beautiful grandchildren that I can’t even talk to because Parkinson’s has taken my voice. The extensive waitlist is putting additional and unnecessary stress on our medical system by forcing people like me to make multiple trips to the emergency room. Furthermore, all signs are pointing towards the incidence of Parkinson’s disease growing exponentially. Something needs to be done now, so people like me can remain in the workforce, as tax paying citizens, and not be forced to live a life confined to our homes on disability.”
– Maureen Hafstein
“I have been close friends with Maureen since before her Parkinson’s diagnosis, observing her journey with the disease for over a decade. I witnessed her dyskinesia, tremors and torturous withdrawals. When she is in the process of withdrawals from her medication, she writhes like a fish on a hook, then sits on the edge of a table and rocks, then moves around the table shaking – stopping periodically to put pressure on one foot or the other to break the pattern. The muscles in her legs shake convulsively as she moves up the stairs to her bedroom, Once there, she lies on her back moving back and forth, trying to hold both of her feet to arrest the motion. During this process she sweats as though running a marathon and says only three words: kleenex, water and help. When it is over, she is completely exhausted. I ask her to rate her withdrawals on a scale of 1-10. She replies that they’ve been a 5. Her symptoms have become so bad that she has looked into dying with dignity arrangements. The wait seems interminable and unsustainable. My friend Maureen, and others on the waitlist, need urgent care. Please do not fail them.”
– Patricia Wilson, friend of Maureen Hafstein
“Before Parkinson’s came along I was a fairly active person. My favorite pastime was traveling with my son and daughter on hockey excursions; I enjoyed being employed as a heavy duty mechanic in the mining industry; and I was (and remain) happily married to a wonderful woman, Shelly. I was 52 years old, and life was great. When I was diagnosed with Parkinson’s my initial reaction was total disbelief. Fast forward several years after my diagnosis, and my life was drastically different than it had previously been. I was consuming large amounts of medications daily, as my condition had deteriorated considerably. Dyskinesia, which is uncontrollable movement, greatly affected my quality of life on a day-to-day basis. While the wait for Deep Brain Stimulation (DBS) was frustrating, I finally had my surgery in June of 2012. I was initially told the procedure would only control my tremors, but I discovered nearly everything Parkinson’s had taken from me (speech, etc) returned to my pre-Parkinson’s state. It gave me back my life.”
– Terry Hume
“The wait for Deep Brain Stimulation surgery was torture. I spent many hours studying the risks and benefits of the surgery. Waiting to see the solution in recovering one’s quality of life, and not having reasonable access, was enough to depress a saint.”
– Garry Toop
Background Information
Duodopa® is a life-changing treatment for individuals with advanced Parkinson’s disease who experience severe motor symptoms that cannot be controlled with standard medications. This innovative therapy delivers a combination of levodopa and carbidopa through an intestinal pump, allowing patients to manage their symptoms more effectively and maintain independence for many years.
For younger individuals, Duodopa® can restore employment opportunities, while for older patients, it helps avoid premature placement in long-term care. This treatment also provides much-needed relief for caregivers, improving their well-being and employment flexibility.
Thanks to advocacy efforts by Parkinson Society British Columbia, Duodopa was approved for coverage under BC PharmaCare’s Special Authority in December 2020. This approval followed years of dedicated work to highlight the significant impact of the therapy on patient outcomes and the potential cost savings for the healthcare system. Although the drug costs approximately $60,000 per year, the number of eligible patients in BC remains small, and the therapy helps reduce the need for more expensive healthcare interventions such as hospitalization and long-term care. The removal of the annual cap on procedures has further alleviated wait times, providing new hope for patients and their families.
Media Coverage
Press
- February 15, 2017 – CFJC Today
Parkinson’s patients in Kamloops applaud B.C. funding for duodopa
[view story] - February 14, 2017 – Kelowna Now
Health Ministry working to cover Parkinson’s medication
[view story] - February 14, 2017 – CBC News
B.C. government to cover expensive Parkinson’s treatment family has pleaded for
[view story] - February 14, 2017 – The Province
Hope man thrilled with government decision to cover expensive Parkinson’s drug therapy
[view story] - February 14, 2017 – Global News
Government will fund Parkinson’s drug
[view video] - February 14, 2017 – Vancouver Sun
Hope man thrilled with government decision to cover expensive Parkinson’s drug therapy
[view story] - February 14, 2017 – CTV News
B.C. to fund pricey Parkinson’s drug treatment
[view story] - February 14, 2017 – CTV News Vancouver Island
‘Best news in the whole world’: B.C. announces coverage of Parkinson’s drug
[view video] - February 14, 2017 – The Now (Surrey); Rossland News; Agassiz Harrison Observer
Costly Parkinson’s treatment to be covered for ‘small group’ of British Columbians
[view story] - February 14, 2017 – CKNW New Talk AM980; AM730; iNews880AM
Expensive Parkinson’s treatment now covered by PharmaCare
[view story] - February 14, 2017 – GlobalNews.ca
B.C. Health Ministry will cover Parkinson’s medication Duodopa
[view video] - February 14, 2017 – Government of British Columbia
Health Ministry to cover Parkinson’s medication
[view press release] - February 10, 2017 – CTV News Vancouver Island
Woman’s emotional plea for Parkinson’s drug to be brought up at BC Legislature
[view video] - February 9, 2017 – CTV News Vancouver Island
Families in other provinces say drug is a miracle
[view video] - February 9, 2017 – CTV News Vancouver Island
‘Game-changer’ Parkinson’s drug not covered in B.C. helping other Canadians
[view video] - February 6, 2017 – CTV News
Offers pour in for Parkinson’s patient
[view video] - February 3, 2017 – CTV News
‘I don’t want to die’: B.C. woman living with Parkinson’s wants therapy approved
[view video] - January 31, 2017 – Global BC
Parkinson’s patients want funding for expensive drug
[view video] - December 29, 2016 – CBC
Victoria family makes emotional plea for coverage of Parkinson’s drug
[view story] - December 23, 2016 – Global BC
Family battles the government to get Parkinson’s drug covered
[view video] - May 12, 2016 – Langley Times
Langley woman only Parkinson’s patient in B.C. to have special medicine
[view story] - April 12, 2016 – 24 Hours Vancouver
BC Asked to fund rare Parkinson’s treatment
[view story]
Videos
- Watch the advocacy video that helped secure access to Duodopa therapy through BC PharmaCare in February 2017.
- Our Papa, DUODOPA and Parkinson’s (December 2016)
This video features the grandchildren of a person with Parkinson’s who is in need of DUODOPA treatment in BC to improve his quality of life
[watch the video]