[wwally0]

Hello folks. I don’t know how useful it will be sharing Canadian concerns, but if trends are similar lives of people with PD may also be effected in the USA, abroad and elsewhere. For totally self-serving reasons I started looking at my province’s, and other provincial and territorial, drug programs. On PEI, if a person of my age (45) has MS his or her medication is covered by a provincial MS Drug Program, where the amount you pay is based on how much income you take in, and doesn’t interfere with your personal cash assets, but people under 65 with PD are expected to pay 100% of drug costs until they are completely broke and then the provincial gov. will step in. Granted, MS drugs are significantly more costly, but a person with PD would still exhaust savings pretty quickly spending $4000.00 – 8000.00/year out of pocket. If I were a Senior all PD meds would be covered, even the newest drugs, pending a doctor’s recommendation and provincial approval.

As I look across Canada PD is very under-represented regardless of the age group. Diabetes, Kidney Disease, Autism, CF, CP and others are prominent in government legislation and have their own treatment programs. However, every province is different in approach. As we advance in this disease and more tailored drugs are required expense inevitably rises. Treatment choices should be based what drug does the best job, not what folks can afford. Even the insured person, as we read on this board, wonders if their brokers will cover a drug or arbitrarily pull the plug. I’m not fonder of a handful of officials making these decisions. Wouldn’t it be refreshing to see governing boards comprised of persons with disabilities, medical and support professionals and then government folks could chair the necessary meetings insuring that results are enshrined in protected legislation that won’t evaporate should another party take over the decision making process

Federally, we have a Conservative minority government, which may fall anytime soon depending on how MPs vote after the Throne Speech which outlines government’s proposed priorities and expenditures. The probable election opens a window to get new programs on the agenda. “Catastrophic drug costs” is term all participants are using to describe debilitating and impoverishing medication expenses. The Canadian Medical Association, unions and pensioner advocates are asking that drugs costing more than 3% of one’s income be paid for with the support of a national drug program.

As long as I am idle these kinds of causes will help keep my sanity. Once research is complete, I’ve been asked to present it to my local Parkinson’s Association Meeting. Then, I will arrange for people with PD, the PD Association President, a GP, a Neurologist, along with me own humble self to meet the Minister of Health to advocate for a new Provincial PD Drug Program and to prepare for national opportunities as thy arise. My 6th sense tells me the drug coverage issue is about to explode. None of this that I’ve written requires a response – you’ve already help me with a venue to organize my thoughts. Political will is a funny thing; sometimes have to light one candle under its butt, to get it started.
Best regards, Guy