Originally Posted by Jim091866
Ths is taken from the Canadian health ministry's website:
DUODOPA™ (levodopa/carbidopa intestinal gel) FOR USE IN THE
TREATMENT OF ADVANCED LEVODOPA-RESPONSIVE PARKINSON’S
DISEASE WHEN SATISFACTORY CONTROL OF SEVERE, DISABLING,
MOTOR FLUCTUATIONS AND HYPER-/DYSKINESIA CANNOT BE
ACHIEVED WITH AVAILABLE COMBINATIONS OF PARKINSON
Sounds like having unpredictable off time, dyskinesia fits the bill to me!
Ok, so if I dissect this, you cannot get this in Canada unless you
1. have ADVANCED PD (this will probably mean that you are really bad off)-to me, this seems like a very good way to significantly limit this option only to those who they expect will not need it very long
2. your PD responds to ldopa
3. you have to be able to show that you have tried all the available combinations of PD meds and that they were not sufficient to obtain "satisfactory control" (aka we-are-not-giving-this-to-just-any-PWP)...in other words, if someone decides that you get "satisfactory control" with drugs, you will not meet the criteria to get this treatment
4. you have motor fluctuations that are not only severe (again, who gets to decide this, what may be severe to the patient may not be considered such by the person making the decision (and I doubt that person will be the patient's doctor, that decision-maker maybe won't ever have even seen the patient, but I'm cynical)...so they have to be "severe" as well as "disabling", again, a subjective definition. What is disabling to a patient might not be considered disabling to a healthy administrator sitting behind a desk reading application after application....again,
It would be really interesting to see how many PWP there are in Canada...then see how many applications have been made for this....and how many have actually been granted. Because I'm a glutton for punishment, I'd also be curious to see just what the stated reason(s) were for each denial.
I can see those purported justifications now:
PD not advanced enough
motor fluctuations not severe or disabling enough
drugs are working well enough to control satisfactorily said fluctuations
Like I said, I'm cynical. But the gel inserts alone cost over 10K a month-120K a year from what I have read-does anyone really think government will pick up the tab for this on a large scale? Conversely, has the company that sells the inserts reduced the cost for those inserts at all in the last decade that this has been available in other countries? That's why this is not available yet here in the US...someone please tell me I am wrong.