In a few weeks it will be my official 3rd anniversary with a diagnosis of idiopathic Parkinson’s disease. It wasn’t a surprise to me and as with most of us I initially felt more relief than anything as I had been told I had Parkinsonism symptoms three years prior to my official diagnosis.
What has transpired in the three years? Well being in the healthcare profession, a physiotherapist for 29 years I researched PD and think I am very close to getting my PHD!
I am stuck at present. I am an advocate for my local PD family but I have not gone any further. I have attended workshops with the MDS on the latest outcome measures in the treatment of PD. I am a PWR! /Exercise 4Brain Change clinician and have started an exercise class for my local PD family. I have networked and met many PWP. We are all dealing with a progressive neurodegenerative chronic disease which has no cure. Sure there is a lot of research in the pipeline around the world however do PWP have a better quality of life than they did 10 years ago? 20 years ago? I am not convinced. I see and listen to PWP in my local community and learn about individuals diagnosed with PD through social media. There is a lot of suffering going on in the PD community, a lot of broken relationships, and a lot of fear. The most daunting observation for me is the fact that there are so many PWP falling through the cracks in our own communities, suffering from isolation, loneliness, poverty and neglect.They are not living a very good quality of life and are unable to access services. Healthcare is in crisis mode not preventive. Not only is this happening. More and more people are being diagnosed at a younger and younger age. The implications for a decent quality of life are in my opinion, much less the younger you are diagnosed. We can become burdens to our families and to the state at a very young age. We are unable to hold down our jobs. The pharmaceuticals which are prescribed to YOPD are more often than not full of hazardous side affects which ruin relationships, create financial barriers and ultimately decrease quality of life. It is now 2013. Where are we going? I perceive there is little hope of a cure for us in the next 10 years unless we as PWP move on to being activists and create a movement for change. This has to be a global commitment and it has to be powerful. It is time for influence, change and possible cure. We must influence our medical professionals, the scientists, our governments, our agencies and the policy makers. The ‘we’ is US the people living with Parkinson’s disease. Activists seek goals in civil and political spheres. In this case the activists must be PWP.
In my mind there are strategies out there to bring the much needed change for PLWPD. If we all can look back in history and remember how people living with HIV/AIDS showed us that even under the most difficult circumstances it IS possible to achieve change. We need to go BACK to the BASICS. (http://www.hcmstrategists.com/content/Back2Basics_HIV_AIDSAdvocacy.pdf) Activists can become social movements if we work together. We need to honour the contributions of our gifted activists who have been working tirelessly over the years. We in the PD community can learn from others impacted by chronic and debilitating diseases. We need to bring our fellow advocates together to catalyze change. Our voices need to be heard and we must question the status quo. We need a model to follow.
We absolutely need a change in medical research (the MOVEMENT). We want a cure ultimately and/or to at least to stop the progression of the disease. With this we need a change how research is conducted, how drugs are approved, and how patients engage with federal governments and the private sector. From my research in how the HIV/AIDS movement made the difference in their treatment options now We PWP NEED:
- Resources for research in a timely matter
- Treatments options for everyone……. not just those in advanced stage of disease which incidentally this week, the Canadian Parkinson’s Society announced the Ontario government is only funding those in late stages of PD to access duodopa gel which is in the last stage of trials in the USA. DUODOPA is a combination of levodopa and carbidopa in the form of a gel that is administered directly into the small intestine through a surgically placed tube. This treatment is for use in patients with Advanced Parkinson’s disease who do not have satisfactory control of severe, disabling motor symptoms when using available combinations of other medications for Parkinson’s disease. Duodopa has received a Notice of Compliance with Conditions that it is only used for Advanced Parkinson’s disease. (ref, Canadian PD Society) This is so WRONG! In my opinion. Governments have seem to not get fiscal responsibility. A YOPD who is overmedicated and suffering from many off and on periods is going to cost governments much more than PWP in the late stages of disease. They quickly become a social liability. Where is the PREVENTION?
- Prevention Efforts
- Federal Care Programs
- International efforts to ensure prevention and care are Global Priorities
Change is possible but how do we create change? The voices of advocates must be heard and we must question the status quo. Alternatives must be presented that are possible. We need strong leaders to work with governments and federal agencies who produce policies and strategies with clear goals which will hold them accountable. The movement as a whole has to have POWER. The Occupy Movement never ended up as a movement as there was no change. There was awareness but no change. People Living with Parkinson’s disease around the world need a movement similar to the HIV/Aids Movement , We needed it yesterday. WHO WANTS TO JOIN THIS MOVEMENT? Send me your thoughts.
Here are Mine
1. We need more effective medical research that is meeting PWP needs.We need to transform medical research into patient driven clinical trial designs, accelerated approval and removal of restrictions on study entry criteria and inclusion of all PWP in clinical trials
2. Accelerated Drug Approval- Why not make new drugs widely available to patients in need as quickly as possible?
3. Parallel Track Activists must collaborate to create a system of their own. There must be special programs to distribute drugs currently in clinical trial pipelines but not yet through the trials. We need to get them available to patients who are suffering. The FDA must provide accelerated approval procedures to enable pharmaceutical companies to be able to market new drugs and approve drugs way ahead of schedule as long as the companies agree to complete certain clinical trials. PWP need access to drug sources.
4. We must encourage and create a general political will to support federal investment in research for a cure. We must have increased funding ( a cure is cheaper than the treatment ) Reference this to the Ryan White Care Act. Initially 200 million was set aside for services to people with HIV. By 2011 the total funded federal spending in the USA on HIV/AIDS is 27 billion. The money is spent on research, care and assistance, and international program carried out by drug agencies. Research Activists led the efforts, policy makers implemented the changes. We need an advocacy model to get a MOVEMENT for Parkinson’s disease. This model for AIDS was the most successful public policy change model ever seen in history. WHY HAVE THE PARKINSON’S COMMUNITY NOT LEARNED FROM EXAMPLE?
I will suggest five Key Elements we need to achieve this:
ATTENTION, KNOWLEDGE AND SOLUTION,COMMUNITY, ACCOUNTABILITY and LEADERSHIP
WE MUST inspire people to a level of civil disobedience, PWP must get attention. WE ARE FIGHTING FOR OUR QUALITY OF LIFE AND OUR FRIENDS WHO HAVE PD ..I think we are motivated enough to get attention. GETTING ATTENTION REQUIRES PEOPLE TO FEEL UNCOMFORTABLE, WE AS PLWP ARE UNCOMFORTABLE EVERY DAY! WE MUST MAKE THE DECISION MAKERS UNCOMFORTABLE, THEY DON’T NEED TO FEEL SAFE, WE MUST CHALLENGE THE STATUS QUO WITH NO COMPLACENCY
This will be challenging as it is harder to be heard today. We must analyze communities and their strategies for dealing with PWP. We must understand the consequences of inaction. Please Read Back to the Basics. http://www.hcmstrategists.com/content/Back2Basics_HIV_AIDSAdvocacy.pdf
World Parkinson’s Congress 2013 is in Montreal October 1-4th. PWP can deliver the message if we are informed. We have an opportunity to sit at table with all stakeholders. We do not need a demonstration in New York City , We have Social Media now. PWP are connected all over the world now! We can achieve a movement in 2013. TOGETHER WE WILL WIN!