Quote:
Originally Posted by pegleg
Paula
You know how I am symptomatically, as I do you. We do have to make some noise or we will be left behind! I have had this stuff 18 years - had experimental brain surgery - talked about clinical trials all over the place, and been told "Five more years to a cure" for at least 15 years!
What worries me is what will happen to research funding if health care is completely overhauled? I'm not talking anything political here. I mean health care cannot possibly go like it has been for the last 4-5 years. NIH has actually been receiving MORE funding for research, but with the economy like it is, the costs are higher and we have to compete.
There - I said it "we have to compete" for the dollars. Tell me if you don't agree. Because money is so tight, the blockbuster drugs and therapies are what gets the button pushed for reward. PD has been on the back burner for 40 years because dopamine replacement works so well. Well, that's a lie! The side effects from long-term therapy is worse than the disease in my opinion! I am so dyskinetic and have so much pain, and anxiety and insomnia. Did I say crazy, too? Well, that's where I am headed. My quality o f life (QOL) will start declining at a major fast speed as I enter the 60's. (shiver!)
We have to professionally make sponsors and big pharma, and researchers know how much we suffer - how they can make mega bucks when the 80 million baby boomers hit the market. Dopamine ala carte won't get it!
Jeez, I am rambling! And my typing is going fast. Talk to me readers! What can we put our heads together and do? Yes, we need trial participants, and Fox and PDF and others are working so well with us and us with them to spread the word. But where will the incentive come for new trials?
Did anybody see the Early Morning CBS News today (Friday the 13th)?
http://www.cbsnews.com/video/watch/?...ag=mncol;lst;1
I hope that link works. It's a British study singing the praises of gene therapy. Watch it and tell me how long will it be before our FDA approves it? Will iti be like Duodopa? Been used in Europe for nearly a decade and it's still not approved in the US!
EEK! Paula, you opened the flooding dike! I'll stop now and you talk to me forumites.
Peg (holdiingn on but fading fast) |
If the health care act really does go fully though, the ones with mega problems like multiple spine problems (me) or older men they would like to say are too old to be treated for metatasic prostate cancer (my husband before I gave them a piece of my mind and they redecided to treat him) just won't be able to get that kind of care, no matter how much money they have or don't have.
The young healthy and able to go into the work force will have first priority. The kiss second. (hopefully they will be able to go into the workforce at sometime.) The seniors won't be so lucky. The really ill ones come to the US or elsewhere for healthcare.
I have friends in Canada and England and they tell me they are assigned to groups. If you move they assign you to a different group. You wait until they have time to get to you.
I pray I am wrong or that the health care is just better, but I am not holding my breath.
Malinda