Watching the Future

There’s a huge debate going on now about the need for clinical trials for MS Liberation treatment. I fully support the need and desire for this clinical trial to occur if only for the precedent this will set for those of us in Canada with incurable chronic diseases that we just have to live with because honestly we live in a state of trying to prevent further escalation of our conditions. In 5 years that could be an Arthritis treatment that the government will be denying someone like me who has two fake hips, working on two fake knees and watch my hands get less and less able everyday. I am at the stage in my life where my arthritis is evident on my hands and feet.

We aren’t being treated and we aren’t being cured. What we are getting are regimes of drugs that the medical community hopes to prolong our current quality of life for as long as possible. Disease progression can’t be predicted with any certainty and what is being called treatment doesn’t really treat anything. It’s a state of flux some days will be good, some days will be bad and all we really know is that you can slow things down with the right medication and sometimes the medication’s effects are just as harsh as the disease itself.

My other big issue here is that while the Health Ministers dicker about the possibility of clinical trials I’m watching an opportunity for my province to step up and lead by saying we’ll do this for you our citizens. Manitoba’s location could easily lead it to become a research capital in many fields but as per usual the current sitting provincial government does nothing to lead just remain status quo.

I am also blown away with the fact that my surgeon was allowed to take my hips after they had been removed for research purposes. I wasn’t asked, I wasn’t able to give consent and at the heart of the research these medical professionals will be accessing my DNA. I didn’t give anyone permission to access and study my DNA, heck no one even mentioned that it was a possible that they would use my situation for research. I would have consented to assisting the researchers, I would have consented to having them taking my hips and working on new treatments and new cures. I just wasn’t asked it was assumed that they could have ownership of them and do what they pleased with them. My husband found out when a nurse disclosed the information to him in an offhand manner.

So if adults can be used at test subjects and lab rats without permission and without informed consent why are the two levels of Health ministries having issues with a clinical trial composed of consenting adults who are looking for hope, looking for something that re-affirms that research is really moving forward and that new ideas are being explored. I think part of the problem is that none of these appointed ministers have lived themselves with any such deteriorating condition as MS, Arthritis, Lupus, or Fibromyalgia. They have no idea what it is like to lose hope, to lose your body and in some ways lose your mind. When you take on a condition like this you are never the same again but deep down you always want to have hope. Things will improve, there is new research being done all the time, that Europe will help to guide North America in patient care…these two level of government are killing people’s hope.

Dear Theresa Oswald, I am watching you on this issue because while I don’t have MS someday that could be me seeing a positive treatment for a disease that wants to cripple me, damage me, take me from my children, take me from my husband, and cause me great physical and emotional harm. What you do now in this situation affects how every advance will be treated by the province in the future. You are failing the people of this province that you are supposed to give the very best health care you can to. In 2011 I will be one voice out of many encouraging the people of Manitoba to FIRE you.

Dear Stephen Harper, I am not going to forget that you have more worries about a gun registry than the health of your people. You could stand up, you could lead this country but instead you’ve let your citizens down. The gun registry is not a hill to die on. When the writ drops I will be there with my voice to encourage the people of Canada to FIRE you.

I will be on the steps of the Manitoba Legislature supporting the MS Rally being held at noon on Monday September 20th. I will be standing solidarity with the folks that want clinical trials here and that want after care if they have already gone over seas for treatment that they have had to pay for. It shouldn’t be this way if there is a pool of subjects wanting hope and ready to try to advance a treatment that could give hope to every MS sufferer in the world. Why does governments want to quash hope?

My arthritis is genetic, my children are at risk and in 5 years I want to smile when I hand over the papers to my rheumatologist to consent to a new clinical trial that maybe saves my child from the fear of fevers, from the side effects of heavy medication, from the pain of a joint dying, from the addiction and cost of pain killers…I could go on. On my worst day prior to surgery and even before I had surgery as an option I had days where I thought about how much Percocet could kill me. I thought dark thoughts about killing myself and that my kids and husband would be better off without the burden that I was becoming. I never want to know that my kids have lost hope like I had.

I thank everyone with MS who is coming forward and standing up for their right to care…you are paving the way for the rest of us to enjoy medical advancements in a timely manner.

Advertisements

About Shirley Robert

Wife, Mom, Politician, Project Manager, Arthritic, Blue Bomber Season Ticket holder, Mary Kay Rep, and Advocate. I'm a whole lot of different and proud of it! View all posts by Shirley Robert

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: