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HUGE Canadian Gov't Support for Prostate Cancer

Discussion in 'Action Alerts and Advocacy' started by parvofighter, Apr 2, 2010.

  1. parvofighter

    parvofighter Senior Member

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    Look at the support for Prostate Cancer! Heads-up Canadians (and others!) - we need to leverage this high-level and very visible Canadian government support, so treatment for XMRV-related prostated cancer spins off to treatment for XMRV-related ME/CFS. This is a wonderful win/win. We can help each other! (And it's not restricted to Canada).

    MPs find the ties that bind: cravat common front for Layton's cancer battle

    Wed Mar 31, 7:09 PM By The Canadian Press
    [​IMG]
    OTTAWA - The barbs and low theatre that make up the (Canadian) House of Commons daily question period didn't disappear Wednesday. But for a few moments they were put aside for some kind words across the aisle and a rare sign of sartorial unity.

    Virtually every member of Parliament from every party wore a teal-and-blue-striped tie or scarf in support of NDP Leader Jack Layton's fight against prostate cancer. The Toronto MP is in the middle of a treatment regimen that has seen him lose some weight and occasionally look wan.

    Cdn Parliament Pr&.jpg
    Layton, 59, has rarely missed a session of the Commons since Parliament reconvened March 4 and has vowed to stay on the job until his health is fully restored. The Tory hue of the ties and scarves of Prostate Cancer Canada prompted additional congratulations from Conservatives on the choice of colour.

    "We are delighted to join in solidarity with the leader of the NDP on the issue of prostate cancer," Prime Minister Stephen Harper told the House.

    "We are delighted to see him looking so good and so healthy in this House of Commons, and looking ever better in that blue tie." The Conservatives even eschewed their usual partisan jab at Liberal Leader Michael Ignatieff in the final member statement before question period to pay tribute to Layton's medical battle. "His public gesture of courage showed Canadian men and their families that they are not alone in their daily fight to combat this illness, but more needs to be done," said Conservative MP Jim Abbott. "Government members are proud to wear the ties and scarves that are a symbol of Prostate Cancer Canada, to show their support for the member for Toronto-Danforth and all Canadians who have had or are battling this disease."

    Layton was grateful and hoped the unified front might be pushed beyond fashion and into the realm of policy. "A big thanks to all my colleagues here for the consensus on the ties and scarves. And a big thanks to Prostate Cancer Canada and all the medical staff and volunteers who work on this issue," he told the House. "Who knows, maybe we can create some consensus on a few other things here."
    My next project as soon as I'm up to it (and once BMJ is disposed of:D): writing a position paper on why Prostate Cancer and ME/CFS groups should be working together internationally to accelerate access to XMRV diagnostics/therapeutics and clinical trials. More group connections to follow.

    XMRV Global Action, here we come! :Retro smile:

    ACTION ITEM:Anyone want to craft a letter to Jack Layton & Stephen Harper re: XMRV, high Gleason-grade prostate cancer, and the urgent need for XMRV research funding (Canadian Institute of Health Research? CIHR) and clinical trials for prostate ca and ME/CFS in Canada? Let's strike while the iron is hot! I'd be happy to participate.
  2. Kati

    Kati Patient in training

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    Parvo I wrote a letter to Harper last week in regards to CFS. I received a letter saying they passed it on the Health Minister. I also sent a letter to the Canadian Institute of Health Research ( http://www.cihr-irsc.gc.ca/e/193.html ). This is the agency that distributes the research money in between researchers and diseases. It was a letter both including my personal experience with CFS and my experience with the doctors (which is not complimenting them on any levels). To all canadians reading, it is the best time to ask for more money research for this disease, and urging for better care, more specialists for us... you name it. Access to XMRV testing would be much appreciated (for free) and collaboration in multi-center clinical trials. Also try your political representant, they need to be aware of what's going on and when time comes, to root in our direction.

    The time is now.
  3. julius

    julius Watchoo lookin' at?

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    I'm in...all in actually. I'm a novice at advocacy so I'd need a little hand holding, but I can get a lot done if I know what to do.

    A question. Should we gear toward research? It seems to me that there is already a ton of research in the pipeline, and that starting a push for funding now is a bit late. Our studies would just be getting off the ground when GSK and WPI are reporting results.

    Maybe we should just be looking to get the word out that this virus exists. Maybe get the red cross looking for it in our blood supply.
  4. Kati

    Kati Patient in training

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    Julius: research allows scientists to shine, for instance, if Dr Jolicoeur gets a second grant, he will certainly be given a good chance at helping finding a new feature of the XMRV. The man studied MuLV and HIV all his life. so a letter to the CHIR will help directing funds into that kind of research, and maybe even encourage other scientists that usually work in HIV to work on the gamma retrovirus. It is all good because they will need samples, participants and doctors will start working with CFS patients a bit more. All win win. The word has to be sent out early especially now that other studies are getting in.

    Canadian Blood services have not replied to my letter a while ago so it would be worth writing again. The government needs to be aware that we have had no care al these years and this disease that once thought to be of psych origin now has a retrovirus as a possible cause.

    Time to spread the news. Don't forget to write your personal experience. If you want an expemple of what I sent, let me know and will send it as PM
  5. parvofighter

    parvofighter Senior Member

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    Great news Kati & Julius

    Kati & Julius, thanks so much for your great posts, and obvious willingness to act! Here's my off-the-cuff thoughts. I like to think of it as busting up logjams that lie between both of us: (ME/CFS patients) and the high-grade Gleason (highly malignant) prostate cancer community - and treatment for both our groups. These shared challenges include:

    • Accelerating access to XMRV diagnostics (as soon as they are validated) across Canada for Prostate Cancer AND ME/CFS. This includes:
      • RNase-L assays (as the RNase-L linkage keeps cropping up in patients in both diagnoses)
      • XMRV diagnostics. We can ALREADY do a service to the prostate cancer lobby by sharing our experiences (to the extent that we are willing re: privacy), so that patients with highly malignant prostate cancer can avail themselves for example of what we have learned about VIPDx, and how to arrange testing in Canada.

    • Ensuring that Clinical Trials by global pharma companies and major U.S. research centres include Canadian patients and centres wherever possible. Our first access to XMRV therapeutics in Canada may be through clinical trials. We need to share the great news (potentially surprising to the Prostate Cancer lobby) that leaders in prostate cancer/XMRV such as Drs Singh and Silverman are recognized for expertise and research in BOTH areas. It's kind of like one of those OLD Doublemint commercials. Double your pleasure. If you're lucky enough to be at the leading edge of XMRV research, there is glory possible in BOTH Prostate cancer and ME/CFS. We need to help our Canadian researchers in both areas understand who some of the early luminaries are in the U.S.. Kind of like a "cheat sheet" of "Who's Who" in the emerging race of XMRV research. So that it's easier for Canadian researchers etc. to contact them and say, "Hey, can we be a Canadian arm of your Clinical Study". We need also to have Canadian clinicians directly contacting the WPI to identify what they need to do to collaborate with upcoming WPI research. How can Canadian patients be included in these clinical studies? There are also significant economies of scale to be achieved when Canadian researchers (eg. at CIHR) realize that they can research both disease entities - as Singh and Silverman etc. have been doing. And we need to make this opportunity and its abundant benefits VERY clear to researchers, prostate cancer researchers, AND ME/CFS advocates & researchers.

    • Accelerating approval and access in Canada for orphan drugs. For example, once Ampligen gets FDA approval (fingers crossed), we STILL have a challenge to fight for access in Canada. If I understand correctly, Biovail Corporation will be the distributor for Ampligen in Canada - if it gets first FDA, and then Canadian approval. Biovail and we will need all the help we can get to accelerate this process. Both of our patient populations have subsets who are positive for the RNase-L antiviral deficiency - which Ampligen treats. We can support each other's efforts. Work together with key stakeholders and support organizations such as Biotech Canada - to accelerate access for patients in both groups. Identify other stakeholders which can help accelerate drug access and coverage.

    • Ensuring equitable access across Canada. This is a HUGE issue in the cancer advocacy area. Inequitable coverage across different provinces for cancer drugs. If some of these antiretroviral drugs that seem to be working in vitro for XMRV are therapeutic possibilities for prostate cancer and ME/CFS, we can fight for these together.

    • Identifying antiretroviral specialists/centres (eg. AIDS centres?) across Canada where prostate and ME/CFS patients might be assessed for and provided combination antiretroviral therapy.
    It's a little like the shark and the remora. The shark is the huge juggernaut advocacy body of prostate cancer in Canada (and other countries). The remora is the tiny fish clamped grimly onto the underjaw of the shark, catching the bits of food the shark leaves behind.
    [​IMG]

    Why the prostate cancer advocacy community needs us!
    The difference though, is that the shark has a VERY resourceful remora, which out of sheer desperation has been studying and studying and learning about XMRV. This is a distinct advantage, and we can really help our future prostate cancer advocacy partners get up to speed. Simply put, their lives may depend on our ability to transfer our knowledge quickly and efficiently. Our advocacy, while seriously depleted as a result of ME/CFS,has arisen out of a desperate need to understand the XMRV research. We don't have the luxury of leagues of supportive physicians and surgeons across the country, keeping abreast of the research. Often in our ME/CFS area it is the patients who lead their physicians in being on top of the latest research. And this is an advantage that we can share with the prostate advocacy groups. Collectively, ME/CFS patients REALLY know their stuff about the emerging XMRV research. And we literally POUNCE on new research almost immediately when it appears on the net. Remember also that the prostate cancer patients MOST affected by XMRV are the most desperate ones too - with the most malignant prostate cancers. While they may tend to defer to their more supportive physicians and surgeons (after all, everyone "believes in" prostate cancer!), their advocacy groups may be very grateful for our assistance in speeding up their understanding of how XMRV therapeutics and/or clinical trials might help their patients in most dire need. Now is the time to extend a hand to say, "This is how our community can help the prostate cancer community"! Let's' fight together for access to XMRV diagnostics and treatment!

    A jump-start to global access and learning such as XMRV Global Action
    And perhaps even more important, this can serve as a benchmark - a learning opportunity -for other countries. This is exactly the thinking that Islandfinn, Frickly, Carla, Frank etc. have been mulling over with XMRV Global Action. The focus is on XMRV - which includes potentially MANY neuro-immune diseases, prostate cancer, and of course ME/CFS (and yes - as these connections are confirmed). How can we accelerate access to XMRV diagnostics, clinical trials, treatments around the globe? How can we learn from initiatives in other countries? Forging a connection within Canada between ME/CFS and prostate cancer groups is but one step in a global journey across potentially many XMRV-related disorders. Not only ME/CFS and prostate cancer, but potentially also autism, fibro, atypical MS, as these linkages are confirmed. (And yes, prostate cancer and ME/CFS still waiting for the fat lady to sing... but she's already clearing her throat in readiness, eh?.:Retro smile:)

    More later...
  6. fred

    fred The game is afoot

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    Might I also suggest that you contact/involve the Hemophilia Society of Canada? They are part of a strong network of partners (with an interest in the blood supply) which, I believe, makes it one of the most powerful lobbying groups of its kind in the world. World H[a]emophilia Day is 17th April.

    http://www.hemophilia.ca/en/

    Apologies if this has already been raised or is off topic (I can not assimilate your excellent words today, Parvo).
  7. Kati

    Kati Patient in training

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    Parvo- just a note to say that I am a nurse (heck I used to be since I am on sick leave at the moment) in chemo therapy in a big cancer center in Vancouver. I don't know personally the prostate specialist that does the clinical trials but I know how to reach him. These guys certainly keep with the latest news always and perform clinical trial (multi-centered). I can also check if they once introduce ART in their arsenal and whther it's working. It will be interesting to find out at what stage of cancer they decide to treat for XMRV and how effective it is in treating the prostate cancer and preventing the spread.

    I also have an appointment with an infectious disease at the end of the month, in the center for excellence for HIV. I am preparing an arsenal of scientific papers for them- hope they have heard of XMRV and attended CROI. I got this appointment through e-mailing one of the retrovirologist. I got an answer in less than 12 hours. They MUST be excited about the idea of another retrovirus.

    Thirdly, you can view my blog in here on volunteering with medical students, or approaching universities, and spread the word on ME/CFS that way. My time sharing my story with the medical student had him write a 10 page paper on my situation for his professor to read and also share his whole class about the long neglect of this disease, lack of knowledge, and the retrovirus link. Bam!!! 60-80 medical students now know!

    The time is now! Never been better than now!
  8. Koan

    Koan Be the change.

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    Thanks for this Parvo! It's way over my brain and eyes at the moment. I can only manage short paragraphs at the best of times and this isn't the best of times. (I really appreciate the fact that #5 is all one colour! That really helps me! Many thanks!) I'm going to cut and paste this into a doc. and I may have an easier time with it if I try to break it up into small paragraphs myself. I also struggle when anything about the type changes: italics throw me, bold throws me, underline throws me - together, they knock me down. One at a time they can help me keep things straight, though. I know how crazy this sounds, believe me!

    And, thanks Kati for the reminder re Blood Services and the link to CIHR!!!

    Thanks Julius for being Julius and furthering the dialogue with Kati.

    And, thanks Fred for the great idea to team up with HSC - great timing!

    Parvo, you are a wonder! I wish I were a wonder, too, but I just wonder. :tongue:

    peace and thanks

    :hug:
  9. fred

    fred The game is afoot

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    You may find yourself pushing on an open door here. PM me if you want more information.
  10. shrewsbury

    shrewsbury member

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    great ideas parvo.

    and fred - hsc sounds the perfect partner

    julius - great that you're in - (and a man who asks for directions - nice!:rolleyes:)

    kati - love that you're doing your weekly advocacy letters - you've come up with some great people to contact. The idea of volunteering with the med students was brilliant!!!!!

    You're being a great leader. I'm a somewhat weak follower right now, but maybe you could paste your letters and the addresses on the BC group page, or we could make it a Canada group. Then others like me could follow in your footsteps, adapt the letters a bit, and these groups might receive numerous communications?

    And then emailing a retroviriologist - again brilliant. An idea (which you've probably already thought of, but just in case): you might want to get all the research to their office ahead of time so that they're informed when you get there. Also - please let us know how it goes. And let the retroviriologist know there are more of us around if s/he is interested. I could get to Vancouver (and there are at least 3 or 4 more of us I know of) for treatment, exploratory visits, blood, clinical trials...............dare I say the word, 'treatment'. My gosh - I'm salivating at the idea.

    and koan - you're wonder-full and wonderful

    Very glad you explained your text-decoding difficulties. I share most of them, but, for me, limited use of one other colour and limited use of bolding to separate ideas helps
  11. parvofighter

    parvofighter Senior Member

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    List of Cdn politicians supporting FM/ME/CFS

    Just thought I'd give this link with a list (not sure how old) of Canadian politicians who wrote letters of support re: FM/ME/CFS. Thank you to glenp for the idea about an NDP leader from Ontario who had CFS and recovered - is now an ambassador. Anyone know who that might be?

    Draft letter to politicians about XMRV, ME/CFS, prostate cancer: takers?
    I'm thinking it might be timely to hit politicians with a letter about XMRV, linking with the support in parliament re: prostate, etc., and asking for them to join us to fight for access to XMRV diagnostics/clnical trials/funding for research for ME/CFS/prosate ca etc?

    List of politicians with personal connections with ME/CFS?
    Here is the link fyi. http://www.fm-cfs.ca/mpquotes.html
    Anyone want to contact FM-CFS Canada to enquire if they have emails of these folks?
    Anyone want to make a sub-list of all the folks on that list who have personal contact with a ME/CFS person?

    Here's an example:
    I am the policy chair for the Mike Menear Campaign. Thank you for your enquiry.
    As someone with a daughter who suffers from Fibromyalgia, I was delighted to receive your e-mail. Please consider this brief reply an indication of moral support, on my behalf and on Michael Menear's behalf, to your commendable efforts to find the cause, better treatments, and a cure for Fibromyalgia.
    Best Wishes,
    Ian Hunter
    Conservative Party, London (Ontario) West
    Email: ________________________
    Maybe we could list it as:

    • Ian Hunter
    Conservative Party, London West
    Email:
    Daughter has FM

    Anyone willing to start the list?:Retro smile:

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