Working with a shared voice can be very effective for improving outcomes in the Movement Disorders clinic, finds Dr. Martin McKeown and Parkinson’s research coordinator Kristen Sundvick.
For some people with Parkinson’s disease (PD), even optimal drug treatments simply aren’t as effective as they need to be. On conventional medication, people may fluctuate unpredictably between being unable to move, to experiencing severe dyskinesias (involuntary writhing movements). This can result in loss of independence and ability, poor quality of life, as well as frequent emergency room visits and hospital admissions that drive up health care costs.
It is with these fluctuations in mind that Jean Blake, CEO of the Parkinson’s Society of BC and Dr. Martin McKeown, Director of the Pacific Parkinson’s Research Centre and movement disorder specialist at the Movement Disorders Clinic at the Djavad Mowafaghian Centre for Brain Health, have been pushing for improved access to a PD drug delivery system. DuodopaTM reduces debilitating fluctuations in conventional treatment by providing a stable, constant level of medication into the intestine via an external pump, similar to an insulin pump someone with diabetes might use. It combines two Parkinson’s drugs, levodopa and carbidopa, which work together to reduce motor symptoms and improve movement and muscle control.
Duodopa has been shown to boost quality of life for patients with severely disabling forms of the disease, and although it has been approved by Health Canada for Parkinson’s treatment since 2007, it has not been accessible to most people in British Columbia who need it, primarily because of the cost.
“The impetus for improved access to Duodopa really came from the patients themselves,” says Sundvick, who helped in engaging patients and channeling their stories. As a result of joint advocacy efforts by Parkinson’s Society of BC and the Movement Disorders Clinic at the Djavad Mowafaghian Centre for Brain Health and beyond, the Ministry of Health granted coverage for Duodopa in exceptional cases deemed clinically appropriate.
“This case is a wonderful example of patients and clinicians working together,” says Dr. McKeown. “We believe that this joint advocacy project will improve the lives of people severely affected with PD and at the same time reduce inefficient use of valuable health care resources.”