Canada: Meeting with Policy Advisor, Ministry of Health

[ScottTriGuy]

Having to try and get Ampligen through the current Special Access Program is a challenge no ME patient could undertake alone.

Hey @Thomas - it sounds like you may have had experience with that process - would you mind sharing your experience? (PM if you'd prefer)

 

[Thomas]

Hey @Thomas - it sounds like you may have had experience with that process - would you mind sharing your experience? (PM if you'd prefer)

Hey. I don't have a ton of experience with it as I'm too ill to even attempt this process. Having said that I have a family member who has been looking into this and the whole thing is quite an extensive process from what I've been told. And can take a lot of time, effort, and money.

I believe that first, one must find a doctor (probably a specialist of some sort) who would be willing to prescribe and infuse the drug (that in itself is almost impossible - or if not impossible, definitely time consuming). Then this particular doctor would have to fill out the SAP forms and applications which are apparently quite detailed. Then it goes for review. Then of course there is no guarantee it will be approved either. So there's many hoops to jump through.

So far, we haven't had any luck and I'm not holding my breath either.

Today on Health Rising, Cort posted a piece on HEMX's new CEO's commitment to getting Ampligen approved. I would hope we can get Canada on the list of countries for approval.

 

[ScottTriGuy]

Thanks for the info - It seems that sometimes the health care system is designed to prevent access to health care. It is yet another systemic (ethical) issue our new govt needs to address.

 

[Thomas]

Thanks for the info - It seems that sometimes the health care system is designed to prevent access to health care. It is yet another systemic (ethical) issue our new govt needs to address.

Agreed. If the subject of this drug comes up in any of your meetings etc and you need some assistance please feel free to PM me. I won't really be able to help but I have family that might.

I'm referring more to policy and logistics than direct advocacy/protests. That's not meant to sound rude but I know my family and know what their strengths are and aren't.

 

[ScottTriGuy]

Thanks - I'll definitely keep you in mind should the opportunity arise.

 

[Justin30]

I have been thinking about this an we have access to IVIG in Canada...

If yhe disease is truly a neuro-immune illness why could this not be suggested as this appears to be a valid treatment for some and Dr Daniel Petterson even recommends it, so does KDM, Chia, Teteilbaum, Park, etc.

Due to our sensitivities there is no reason why Canada could use this treatment as a low dose the titrate up the dose if no adverse affects...

Just a thought

 

[Kati]

I have been thinking about this an we have access to IVIG in Canada...

If yhe disease is truly a neuro-immune illness why could this not be suggested as this appears to be a valid treatment for some and Dr Daniel Petterson even recommends it, so does KDM, Chia, Teteilbaum, Park, etc.

Due to our sensitivities there is no reason why Canada could use this treatment as a low dose the titrate up the dose if no adverse affects...

Just a thought

Hi @Justin30, IVIg is used for certain designations in Canada. One of them is IgG subclass deficiencies. Dr Peterson would know to use IVIg for this condition which can occur with patients with ME. You can get tested for That by asking your dr, and the name of the test is simply that, IgG subclasses, and you can also request to have IgG, IgM and IgA quantified as well. Should you have abnormalities in that regard, ask your physician to send you to an immunologist.

As for treating patients with IVIg in the absence of deficiencies it has not proven an effective treatment for our patient population or else, we would all be on it. Perhaps Ampligen and Rituximab would be better choices of potential treatments/ clinical trials at this point but still, no definitive answers. We are in desperate need for sound research and access to clinical trials. We need federal leadership. We need sound leaders who have a solid medical foundation and capacity to take this disease to the next level.

 

[ScottTriGuy]

Recap and update:

April 14th - Dr. Alison Bested (via phone), Margaret Parlor (President of National ME/FM Action Network) and myself met with one of Federal Health Minister Dr. Jane Philpott's Policy Advisors, Dr. Jesse Kancir. Submission of a Patient Perspective proposed 2 next steps: a Stakeholders Meeting, and request that Minister Philpott acknowledge ME Awareness Day.

April 15th - I sent an email to Dr. Kancir to thank him for the meeting.

April 28th - I sent an email attaching Patient Perspective II calling for a Federal Framework for Myalgic Encephalomyelitis, included an invitation to the Parliamentary Breakfast (co-hosted by National ME/FM Action Network), an invitation to a post-Breakfast meeting to discuss a Federal Framework, and a request that Minister Philpott acknowledge ME Awareness Day.

May 9th - Dr. Kancir replies, his email is below.

May 11th - My reply to Dr. Kancir, my email is 2 below:


Hi Scott,


Sorry for taking so long to respond to this request. I was reminded of this email today when an invitation to the ME/FM breakfast this week landed in my inbox. It doesn’t seem like at this point I’ll be able to make it out to that breakfast, though I’ll approach some colleagues and see if they are interested in attending. It may be that one of our regional desk staff members may be able to head out. One of the difficulties with a breakfast meeting is our earlier starts to our days and these invitations frequently have to be missed by us. If one of my colleagues can attend, I’ll let them know of the invitation to meet and perhaps something can be arranged?


I’ve printed off your last submission and will aim to read it this week, as well. I know the passion that you bring to this file and I appreciate you taking the time to personally address a submission to me.


Finally, regarding the announcement around International ME Awareness Day, I’ll forward along the request internally to the appropriate team member. Decision on announcements are outside of my scope here and so perhaps there’s already something in the works I don’t know about.


Again, thanks for reaching out. I hope you are doing well and that the struggles you mentioned a few weeks back ago with your health have improved.


Take care,

Jesse


My reply on May 11th:

Hi Jesse,

Thank you for your email responding to my request. However, the content provided little confidence that I have been successful in my attempts to adequately convey the urgency to prioritize the needs of Canadian ME patients and develop a Federal Framework for Myalgic Encephalomyelitis.

Now that I have communicated details of egregious harm to Canadian ME patients within the medical system to you and Minister Philpott, we share an ethical responsibility to stop the harm, start the research, and start the treatment. Jesse, I do not make that statement flippantly. Inaction is a moral failure.

I understand your concerns about jurisdictional boundaries. Yet, those boundaries are the reason the Minister must intervene. The Federal Framework for Lyme Disease conference beginning May 16 is a current example of federal intervention working towards improving healthcare in Canada.

The need for intervention is obvious. Canadian ME patients not only have the highest unmet health care and research funding; but also, they are being harmed by the medical system with contraindicated treatment. Each of these individually would merit review; collectively, they are indicative of ongoing systemic failures.

Past behaviour is the best predictor of future behaviour. Minister Philpott has “walked the talk” with respect to HIV/AIDS. She identified patients’ needs, and responded accordingly. Now, it is Canadian ME patients whose needs are greatest. The systemic issues presented in my Patient Perspective documents can only be addressed by federal leadership implementing a Federal Framework for ME.

Jesse, if it is not within the scope of your position to meaningfully bring this issue to Minister Philpott’s attention, please let me know who I need to contact within the Ministry of Health to ensure this important initiative receives the attention it deserves. I look forward to hearing from you.

Sincerely,
Scott

 

[shannah]

Eloquently stated @ScottTriGuy . The urgency of the situation comes through. Well said!

 

[ScottTriGuy]

Eloquently stated @ScottTriGuy . The urgency of the situation comes through. Well said!

Thanks - I had the wisdom and finesse of @Old Bones as support.

 

[Kati]

Recap and update:

April 14th - Dr. Alison Bested (via phone), Margaret Parlor (President of National ME/FM Action Network) and myself met with one of Federal Health Minister Dr. Jane Philpott's Policy Advisors, Dr. Jesse Kancir. Submission of a Patient Perspective proposed 2 next steps: a Stakeholders Meeting, and request that Minister Philpott acknowledge ME Awareness Day.

April 15th - I sent an email to Dr. Kancir to thank him for the meeting.

April 28th - I sent an email attaching Patient Perspective II calling for a Federal Framework for Myalgic Encephalomyelitis, included an invitation to the Parliamentary Breakfast (co-hosted by National ME/FM Action Network), an invitation to a post-Breakfast meeting to discuss a Federal Framework, and a request that Minister Philpott acknowledge ME Awareness Day.

May 9th - Dr. Kancir replies, his email is below.

May 11th - My reply to Dr. Kancir, my email is 2 below:


Hi Scott,


Sorry for taking so long to respond to this request. I was reminded of this email today when an invitation to the ME/FM breakfast this week landed in my inbox. It doesn’t seem like at this point I’ll be able to make it out to that breakfast, though I’ll approach some colleagues and see if they are interested in attending. It may be that one of our regional desk staff members may be able to head out. One of the difficulties with a breakfast meeting is our earlier starts to our days and these invitations frequently have to be missed by us. If one of my colleagues can attend, I’ll let them know of the invitation to meet and perhaps something can be arranged?


I’ve printed off your last submission and will aim to read it this week, as well. I know the passion that you bring to this file and I appreciate you taking the time to personally address a submission to me.


Finally, regarding the announcement around International ME Awareness Day, I’ll forward along the request internally to the appropriate team member. Decision on announcements are outside of my scope here and so perhaps there’s already something in the works I don’t know about.


Again, thanks for reaching out. I hope you are doing well and that the struggles you mentioned a few weeks back ago with your health have improved.


Take care,

Jesse


My reply on May 11th:

Hi Jesse,

Thank you for your email responding to my request. However, the content provided little confidence that I have been successful in my attempts to adequately convey the urgency to prioritize the needs of Canadian ME patients and develop a Federal Framework for Myalgic Encephalomyelitis.

Now that I have communicated details of egregious harm to Canadian ME patients within the medical system to you and Minister Philpott, we share an ethical responsibility to stop the harm, start the research, and start the treatment. Jesse, I do not make that statement flippantly. Inaction is a moral failure.

I understand your concerns about jurisdictional boundaries. Yet, those boundaries are the reason the Minister must intervene. The Federal Framework for Lyme Disease conference beginning May 16 is a current example of federal intervention working towards improving healthcare in Canada.

The need for intervention is obvious. Canadian ME patients not only have the highest unmet health care and research funding; but also, they are being harmed by the medical system with contraindicated treatment. Each of these individually would merit review; collectively, they are indicative of ongoing systemic failures.

Past behaviour is the best predictor of future behaviour. Minister Philpott has “walked the talk” with respect to HIV/AIDS. She identified patients’ needs, and responded accordingly. Now, it is Canadian ME patients whose needs are greatest. The systemic issues presented in my Patient Perspective documents can only be addressed by federal leadership implementing a Federal Framework for ME.

Jesse, if it is not within the scope of your position to meaningfully bring this issue to Minister Philpott’s attention, please let me know who I need to contact within the Ministry of Health to ensure this important initiative receives the attention it deserves. I look forward to hearing from you.

Sincerely,
Scott

Very powerful, thank you @ScottTriGuy. Fingers crossed.
i am doing my own campaign on twitter. All I can manage at the moment

 

[ScottTriGuy]

Very powerful, thank you @ScottTriGuy. Fingers crossed.
i am doing my own campaign on twitter. All I can manage at the moment

Thanks Kati - it is outrageous that patients have to do campaigning at all, especially with the level of disability we endure - hope you get a better patch of health soon.

 

[Comet]

Thanks Kati - it is outrageous that patients have to do campaigning at all, especially with the level of disability we endure - hope you get a better patch of health soon.

I'm not Canadian, but I want to thank you @ScottTriGuy and @Old Bones for your efforts in this. Better results anywhere will eventually effect patients everywhere.

I barely muddled through ordering shoes for the #MillionsMissing protests, I can't fathom having the brain power to write such compelling letters, or present myself so well at important meetings. So impressive! Thank you!

 

[Justin30]

Thanks Kati - it is outrageous that patients have to do campaigning at all, especially with the level of disability we endure - hope you get a better patch of health soon.

Scott, it is truely inhumane....because I/we are labeled with this disorder and so little has been done through research.....Drs if I had other problems dont even take me seriously in Canada....

I have had several other complications and Drs send me home...you know my story....I feel so let down by our healthcare system....

 

[Justin30]

And once again thank you for everything youare doing...

 

[shannah]

I was in bed watching the news and just heard about the latest Canadian investment into international health care. Now I'm just too angry to sleep.

Jane Philpott announced today 4.95 million for research into the Zika virus and for humanitarian aid to countries hardest hit by the epidemic. 3 Million of that will be funding a collaboration between researchers in Canada, Latin America and the Caribbean.

They can act so quickly for a crisis internationally. They don't think people desperately suffering with M.E. in their own country are worthy of research dollars? They talk about distraught parents and fearful mothers in the second article. They don't think Canadian parents of children with M.E. aren't distraught after watching our children suffer for decades neglected by the medical profession while we try to treat them ourselves???

Alain Beaudet talks about the quality of Canadian researchers and that we have some of the finest minds in the world in virology and infectious diseases and how pleased they are to offer their help to other countries. When will these fine minds tackle M.E. in Canada for Canadians???

We truly are invisible aren't we??? What will it take to lift the veil from their eyes???

https://www.thestar.com/news/canada/2016/05/11/canada-to-spend-5-million-on-global-zika-fight.html

Quotes:

"These (research) teams will collaborate to better understand the link between Zika, microcephaly and Guillain-Barré syndrome; develop improved diagnostic tests; study how the virus is transmitted; and better prevent its transmission through more effective mosquito control measures."

"In the countries that have been hardest hit by the Zika virus, in Latin America and the Caribbean, thousands of cases of microcephaly have left parents distraught and pregnant women fearful." The Honourable Jane Philpott Minister of Health

"As Canada's contribution to the Ebola epidemic demonstrated, this country is home to some of the finest minds in virology, infectious diseases and public health anywhere in the world. CIHR is pleased to be able to help equip these researchers with the resources they need to intervene in this public health emergency and contribute to this important global collaboration." Dr. Alain BeaudetPresident, Canadian Institutes of Health Research

https://ceo.ca/@newswire/government...-5-million-to-global-fight-against-zika-virus

Unfortunately, the articles I've scanned are not accepting comments.

 

[concepcion]

Recap and update:

April 14th - Dr. Alison Bested (via phone), Margaret Parlor (President of National ME/FM Action Network) and myself met with one of Federal Health Minister Dr. Jane Philpott's Policy Advisors, Dr. Jesse Kancir. Submission of a Patient Perspective proposed 2 next steps: a Stakeholders Meeting, and request that Minister Philpott acknowledge ME Awareness Day.

April 15th - I sent an email to Dr. Kancir to thank him for the meeting.

April 28th - I sent an email attaching Patient Perspective II calling for a Federal Framework for Myalgic Encephalomyelitis, included an invitation to the Parliamentary Breakfast (co-hosted by National ME/FM Action Network), an invitation to a post-Breakfast meeting to discuss a Federal Framework, and a request that Minister Philpott acknowledge ME Awareness Day.

May 9th - Dr. Kancir replies, his email is below.

May 11th - My reply to Dr. Kancir, my email is 2 below:


Hi Scott,


Sorry for taking so long to respond to this request. I was reminded of this email today when an invitation to the ME/FM breakfast this week landed in my inbox. It doesn’t seem like at this point I’ll be able to make it out to that breakfast, though I’ll approach some colleagues and see if they are interested in attending. It may be that one of our regional desk staff members may be able to head out. One of the difficulties with a breakfast meeting is our earlier starts to our days and these invitations frequently have to be missed by us. If one of my colleagues can attend, I’ll let them know of the invitation to meet and perhaps something can be arranged?


I’ve printed off your last submission and will aim to read it this week, as well. I know the passion that you bring to this file and I appreciate you taking the time to personally address a submission to me.


Finally, regarding the announcement around International ME Awareness Day, I’ll forward along the request internally to the appropriate team member. Decision on announcements are outside of my scope here and so perhaps there’s already something in the works I don’t know about.


Again, thanks for reaching out. I hope you are doing well and that the struggles you mentioned a few weeks back ago with your health have improved.


Take care,

Jesse


My reply on May 11th:

Hi Jesse,

Thank you for your email responding to my request. However, the content provided little confidence that I have been successful in my attempts to adequately convey the urgency to prioritize the needs of Canadian ME patients and develop a Federal Framework for Myalgic Encephalomyelitis.

Now that I have communicated details of egregious harm to Canadian ME patients within the medical system to you and Minister Philpott, we share an ethical responsibility to stop the harm, start the research, and start the treatment. Jesse, I do not make that statement flippantly. Inaction is a moral failure.

I understand your concerns about jurisdictional boundaries. Yet, those boundaries are the reason the Minister must intervene. The Federal Framework for Lyme Disease conference beginning May 16 is a current example of federal intervention working towards improving healthcare in Canada.

The need for intervention is obvious. Canadian ME patients not only have the highest unmet health care and research funding; but also, they are being harmed by the medical system with contraindicated treatment. Each of these individually would merit review; collectively, they are indicative of ongoing systemic failures.

Past behaviour is the best predictor of future behaviour. Minister Philpott has “walked the talk” with respect to HIV/AIDS. She identified patients’ needs, and responded accordingly. Now, it is Canadian ME patients whose needs are greatest. The systemic issues presented in my Patient Perspective documents can only be addressed by federal leadership implementing a Federal Framework for ME.

Jesse, if it is not within the scope of your position to meaningfully bring this issue to Minister Philpott’s attention, please let me know who I need to contact within the Ministry of Health to ensure this important initiative receives the attention it deserves. I look forward to hearing from you.

Sincerely,
Scott

Thanks Scott. You've dealt with this perfectly!

 

[Justin30]

I was in bed watching the news and just heard about the latest Canadian investment into international health care. Now I'm just too angry to sleep.

Jane Philpott announced today 4.95 million for research into the Zika virus and for humanitarian aid to countries hardest hit by the epidemic. 3 Million of that will be funding a collaboration between researchers in Canada, Latin America and the Caribbean.

They can act so quickly for a crisis internationally. They don't think people desperately suffering with M.E. in their own country are worthy of research dollars? They talk about distraught parents and fearful mothers in the second article. They don't think Canadian parents of children with M.E. aren't distraught after watching our children suffer for decades neglected by the medical profession while we try to treat them ourselves???

Alain Beaudet talks about the quality of Canadian researchers and that we have some of the finest minds in the world in virology and infectious diseases and how pleased they are to offer their help to other countries. When will these fine minds tackle M.E. in Canada for Canadians???

We truly are invisible aren't we??? What will it take to lift the veil from their eyes???

https://www.thestar.com/news/canada/2016/05/11/canada-to-spend-5-million-on-global-zika-fight.html

Quotes:

"These (research) teams will collaborate to better understand the link between Zika, microcephaly and Guillain-Barré syndrome; develop improved diagnostic tests; study how the virus is transmitted; and better prevent its transmission through more effective mosquito control measures."

"In the countries that have been hardest hit by the Zika virus, in Latin America and the Caribbean, thousands of cases of microcephaly have left parents distraught and pregnant women fearful." The Honourable Jane Philpott Minister of Health

"As Canada's contribution to the Ebola epidemic demonstrated, this country is home to some of the finest minds in virology, infectious diseases and public health anywhere in the world. CIHR is pleased to be able to help equip these researchers with the resources they need to intervene in this public health emergency and contribute to this important global collaboration." Dr. Alain BeaudetPresident, Canadian Institutes of Health Research

https://ceo.ca/@newswire/government...-5-million-to-global-fight-against-zika-virus

Unfortunately, the articles I've scanned are not accepting comments.

I just vommitted in my mouth a bit....this very diseartening.....

I understand the severity but we have viruses in our country that are causing so much disability in the form of ME/CFS.....

Zika needs to be controlled I agree....

But until PACE is discredited and viral and vaccine causes are defined...along with a biomarker....

We in Canada are in for a ride...

 

[BurnA]

@ScottTriGuy great work.


When Jesse said that he hopes your health problems improved, do you think this was just a sincere polite statement or do you think it also represents a misunderstanding that your health may improve over a couple of weeks and everything could be now much better ?

I find it a somewhat strange thing to say to someone with a chronic illness for which there is no treatment. But I don't know any specifics of your health or the conversations so it may well be a justified comment.

Thanks again.

 

[ScottTriGuy]

@ScottTriGuy great work.

When Jesse said that he hopes your health problems improved, do you think this was just a sincere polite statement or do you think it also represents a misunderstanding that your health may improve over a couple of weeks and everything could be now much better ?

Thanks.

It felt sincere to me.

Also, his response when I handed him my triathlon medal seemed genuine - he acknowledged how much meaning it held for me.

I have no doubt he has competing priorities.

I also have no doubt that few other priorities will have greater ethical weight than ongoing harm to ME patients by the healthcare system.