Uncovering the White Horse

Months ago, I wrote a piece about looking for the Knight on the White Horse.  In that piece, I was voicing my frustration with Novartis Pharmaceutical Company.  Their product, Tasigna, had been given in a clinical trial at Georgetown University to Parkinson's patients.  During the trial, they had made verbal promises to continue providing the medication for those patients.  After the trial, they refused.  After jumping through several hoops with Novartis, we finally gave up and began to purchase Tasigna in Canada.  Why Canada?  Since insurance will not pay for a drug not approved for  a particular disease, the cost of the drug can be tremendous.  This particular drug, although approved for leukemia, is not approved for Parkinson's.

We began to check the cost and the reputation of the pharmacy that would be providing the pills.  We felt that Canada was a good option.  Their pharmacies are certified and have credentials showing that they are actually giving you the medication you order.  The first time we ordered from Canada Drugs.com, the cost was $47 a pill. The last time we ordered, it was $40 a pill.  In the United States, it would be three times that much.

While I improved taking the tasigna, it has not been a cure for me.  It is keeping me stable along with the other medications that I take for Parkinson's.  Maybe, I've been diagnosed too long for it to cure me.  It's been almost 20 years since my diagnosis.  I probably had Parkinson's long before the diagnosis.

I think I was dreaming when I came up with the White Horse metaphor.  I believe that we have to construct a white horse ourselves. While Dr. Moussa and Dr. Pagan have found something with a lot of potential, I'm afraid we're still looking for better therapy.  It will take lots of money to find the cure for Parkinson's Disease.  At this point, I think our best course of action is to contact every person in power to let them know how important it  is to fund research.  Also, if you have extra money lying around, it will be important to use it to help.  Last year, we gave some money to Georgetown University to 'fund a fellow' to work in the area of Parkinson's research.  I encourage you, if you can, to follow up with institutions doing research and help them.

I would not wish Parkinson's Disease on any one.  I hate to think that in 20 or so years, the number of sufferers will increase three-fold.  Parkinson's sufferers have had lots of horse manure to deal with.  It would be wonderful to actually ride the horse instead of walking behind it.

This is my sermonette for the day.  Sorry if I've bored you, but today was soapbox day for me.