Demystifying DUODOPA®
Please note that this article was published in late 2015. It was accurate at the date of publishing.
A new treatment has been approved by Health Canada designed to help individuals with advanced Parkinson’s disease who are responsive to levodopa treatment. More specifically, it is designed to treat those with severe, disabling motor fluctuations and hyper-dyskinesia (involuntary movements) not satisfactorily controlled by combinations of available oral medicinal products for Parkinson's disease. The product is called DUODOPA®; a levodopa and carbidopa combination in the form of a gel that is continuously delivered directly into the small intestine via a pump. Because the delivery of the drug is continuous and regulated, it provides a more constant “on” period, thereby reducing disabling motor symptoms of Parkinson’s disease.
Once the drug has been recommended by a doctor with experience in treating Parkinson’s disease, a determination is made as to whether or not the individual is a good candidate for the procedure. During this procedure, a small opening is created, called a “stoma”, allowing for a tube to be inserted through the stomach wall. The drug is then administered through the tube and regulated by a pump. Cassettes containing the intestinal gel are attached to the pump, worn continuously for 16 hours and changed once a day.
Following the surgical procedure, because the dose of DUODOPA® required to moderate Parkinson’s symptoms will vary by patient, adjustments are made to determine what works best for that individual. Generally, a larger dose is administered in the morning, and then a lower maintenance dose is continuously delivered throughout the day. The pump will allow the patient to have the option of controlling some aspects of drug delivery to ensure it is meeting the needs for managing symptoms based on the doctor’s recommendations.
As this is a relatively new product to the Canadian market, only one British Columbian, Gail Guise, has undergone the procedure for DUODOPA®. However, there are a number of people on this therapy across Canada and over 5,500 worldwide. Unfortunately, the product is not yet covered by PharmaCare in BC, as it is in several other provinces. This poses an issue as, although the pool of eligible patients is small, the cost of the drug is $60,000 a year -- which for most people is unmanageable. Most private insurers are covering the cost of the medication and Gail was fortunate to have extended health care benefits, which helped to cover the fees. Despite the challenges associated with drug coverage, she says her experience with the product has been well worth the journey.
Sixty-three year old Gail Guise resides in Langley with her partner, Cathy Carlyle. The couple has a loyal border collie, named Zip, whose biggest joys in life are “protecting” the household and “working” on a friend’s nearby farm. Gail was diagnosed with Parkinson’s disease in 2002. She continued to work as a planning analyst for computer systems. In the fall of 2014, her symptoms were rapidly becoming more difficult to manage on a day-to-day basis. That’s when Dr. Jon Stoessl made the recommendation for DUODOPA® and the procedure was scheduled for March 2015.
“DUODOPA® has been a lifesaver,” says Gail. “Before I was able to have the surgery, it was difficult for me to do the things that many take for granted. For instance, if I was at a restaurant and had to go up to a counter to pay my bill, I’d be unable to. My dyskinesia was just too severe. Now I am able to walk and stand in one place for minutes at a time.” Though it was challenging to adjust to carrying around the pump, Gail had no problem travelling to Hawaii only several months after the surgery. Coolers were used to help store her replacement medication cassettes at the appropriate temperature, and she had no issues getting through security at the airport.
This therapy is not without some potential challenges. Recently, Gail had the tube that delivers the medication to her intestine malfunction whilst she was away in Penticton. This prompted a trip to the local hospital; however, the staff was unfamiliar with the inner workings of the device, so even after x-rays revealed what had happened, they were unable to assist. When she returned to the Lower Mainland, she was able to have another procedure putting the tube back into working order. Her experience has shown not only is there further need to educate PharmaCare on the life-changing effects of this therapy, but that this information needs to be extended to doctors across the province; which is presently in the works and will continue in 2016.
“I’m so fortunate to have DUODOPA® in my life. I would absolutely advocate for the therapy, as I believe there are others with advanced Parkinson’s symptoms that could really benefit from it,” she says.
If you are interested in learning more about DUODOPA®, you can read AbbVie’s consumer information document (http://bit.ly/AbbVie-Duodopa-Info), or contact Parkinson Society British Columbia at 1 800 668 3330.
This content was published in the Winter 2015 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.