ScottTriGuy
Stop the harm. Start the research and treatment.
- Messages
- 1,402
- Location
- Toronto, Canada
Hi folks,
Yesterday was an important day. Whether it’ll prove to be pivotal remains to be seen.
Yesterday I flew to Ottawa to meet with a Federal Policy Advisor, Dr. Jesse Kancir, from the Ministry of Health to talk about the lack of (zero) research funding for myalgic encephalomyelitis (ME), and the harm caused to over 400,000 Canadians living with ME when the medical establishment recommends contraindicated treatment.
I was only able to get a meeting with a Policy Advisor because I have met our new Minister of Health, Dr. Jane Philpott, a few times when our paths crossed during our international HIV/AIDS advocacy and fundraising work. I reached out to Minister Philpott to let her know the plight of Canadian ME patients and yesterday’s meeting was a result of her support.
I invited two other key people to the meeting with greater knowledge and experience with ME policy, research and treatment: the President of the National ME Action Network (Margaret Parlor), and the leading Canadian ME doctor (Dr. Alison Bested). Dr. Bested called in from Florida where she is collaborating with leading US researchers. The unexpected release of a Supreme Court Decision yesterday demanded time and energy from Dr. Rancir, but he still honoured his commitment to our meeting.
A few days prior to the meeting I sent Dr. Kancir a document I called ‘Living with Myalgic Encephalomyelitis in Canada - Patient Perspective’, (attached) that I wrote with the support of other Canadian ME patients @oldbones @katiissick and others. It basically has 3 sections: stop the harm (caused by zero research and harmful ‘treatments’), start the research (funded commensurate with severity and prevalence), and start the treatment (testing and treatment access).
I began by telling my narrative and experiences with the health care system, as a person living with HIV and living with ME. I shared how I was diagnosed with HIV in 1998, for which effective treatment had just been developed by research. How I was only alive because of these medications, and with that came the recognition that millions of people in sub-Saharan Africa were dying needlessly because they did not have access to HIV treatment.
I shared how, morally and ethically, I had to take action. To that end, I founded the Race for Dignity fundraising events and worked with prominent Canadians, Dr. James Orbinski and James Fraser, the co-founders of Dignitas International, to bring access to HIV medications to communities in Malawi. I also shared how I currently work in HIV research at the AIDS Committee of Toronto and with Dr. Trevor Hart’s HIV Prevention Lab at Ryerson University.
I contrasted my experiences with HIV in the health care system, to ME in the health care system. The former (eventually) had focused leadership to intervene in research and health care. Because of that leadership and intervention, HIV is now a chronic, manageable condition, and no longer a death sentence.
But with ME, there is no research, no diagnosis, no access to relevant tests, no access to proper treatment, no hope to escape the suffering of an untreated chronic illness. (This is why I included the quote; “I wish they would stop calling us ‘ME patients’, it implies we receive medical care” in the Patient Perspective.)
I shared that I felt the same ethical and moral pull to take action for Canadian ME patients as I did for African HIV patients.
I explained that there was hope: researchers in Norway are using the cancer drug Rituximab with ME patients, and there is about a 66% response rate. But Canadian ME patients can’t access Rituximab as an off-label medication, and of course there are no Canadian research studies using Rituximab in ME patients, because there is no ME research funding.
I then disclosed that I had been recently diagnosed with a high-grade squamous lesion on my colon. So now, as a Canadian living with ME, my health choice is to either treat the lesion with a simple, safe procedure, or wait, hope the lesion turns into cancer, so I can maybe get access to Rituximab to treat both cancer and ME. I stressed how currently the only hope for treatment for Canadian ME patients was to hope for cancer.
Dr. Bested then spoke to the challenges in research and treatment, and Margaret Parlor spoke to the statistics that expose the unmet health care needs of ME patients. As a next step, Dr. Rancir asked us to provide an outline of what is expected of the Ministry of Health to make progress on biomedical ME research.
As the meeting ended, I also shared with Dr. Kancir my passion for triathlons - that I was the first person living with HIV to compete at the triathlon world championships and had represented Canada 3 times at the triathlon world champs. The last time I was well enough to race a triathlon was 2014. The medals from those last few triathlon races hold a lot of meaning for me.
As a reminder of what I was capable of before I got sick with ME, what I hope to be able to do again, and the critical importance of taking action, I gave Dr. Kancir my first place medal from the Wasaga Beach triathlon in 2014.
______________________________________________________________________________________
It may be helpful if Minister Philpott receives positive feedback for this opportunity to inform the new government of the health care needs of Canadians with ME.
Even something simple like: Thanks for hearing ME patients' unmet health care and research needs.
Email:
Hon.Jane.Philpott@Canada.ca
Twitter:
@JanePhilpott
Yesterday was an important day. Whether it’ll prove to be pivotal remains to be seen.
Yesterday I flew to Ottawa to meet with a Federal Policy Advisor, Dr. Jesse Kancir, from the Ministry of Health to talk about the lack of (zero) research funding for myalgic encephalomyelitis (ME), and the harm caused to over 400,000 Canadians living with ME when the medical establishment recommends contraindicated treatment.
I was only able to get a meeting with a Policy Advisor because I have met our new Minister of Health, Dr. Jane Philpott, a few times when our paths crossed during our international HIV/AIDS advocacy and fundraising work. I reached out to Minister Philpott to let her know the plight of Canadian ME patients and yesterday’s meeting was a result of her support.
I invited two other key people to the meeting with greater knowledge and experience with ME policy, research and treatment: the President of the National ME Action Network (Margaret Parlor), and the leading Canadian ME doctor (Dr. Alison Bested). Dr. Bested called in from Florida where she is collaborating with leading US researchers. The unexpected release of a Supreme Court Decision yesterday demanded time and energy from Dr. Rancir, but he still honoured his commitment to our meeting.
A few days prior to the meeting I sent Dr. Kancir a document I called ‘Living with Myalgic Encephalomyelitis in Canada - Patient Perspective’, (attached) that I wrote with the support of other Canadian ME patients @oldbones @katiissick and others. It basically has 3 sections: stop the harm (caused by zero research and harmful ‘treatments’), start the research (funded commensurate with severity and prevalence), and start the treatment (testing and treatment access).
I began by telling my narrative and experiences with the health care system, as a person living with HIV and living with ME. I shared how I was diagnosed with HIV in 1998, for which effective treatment had just been developed by research. How I was only alive because of these medications, and with that came the recognition that millions of people in sub-Saharan Africa were dying needlessly because they did not have access to HIV treatment.
I shared how, morally and ethically, I had to take action. To that end, I founded the Race for Dignity fundraising events and worked with prominent Canadians, Dr. James Orbinski and James Fraser, the co-founders of Dignitas International, to bring access to HIV medications to communities in Malawi. I also shared how I currently work in HIV research at the AIDS Committee of Toronto and with Dr. Trevor Hart’s HIV Prevention Lab at Ryerson University.
I contrasted my experiences with HIV in the health care system, to ME in the health care system. The former (eventually) had focused leadership to intervene in research and health care. Because of that leadership and intervention, HIV is now a chronic, manageable condition, and no longer a death sentence.
But with ME, there is no research, no diagnosis, no access to relevant tests, no access to proper treatment, no hope to escape the suffering of an untreated chronic illness. (This is why I included the quote; “I wish they would stop calling us ‘ME patients’, it implies we receive medical care” in the Patient Perspective.)
I shared that I felt the same ethical and moral pull to take action for Canadian ME patients as I did for African HIV patients.
I explained that there was hope: researchers in Norway are using the cancer drug Rituximab with ME patients, and there is about a 66% response rate. But Canadian ME patients can’t access Rituximab as an off-label medication, and of course there are no Canadian research studies using Rituximab in ME patients, because there is no ME research funding.
I then disclosed that I had been recently diagnosed with a high-grade squamous lesion on my colon. So now, as a Canadian living with ME, my health choice is to either treat the lesion with a simple, safe procedure, or wait, hope the lesion turns into cancer, so I can maybe get access to Rituximab to treat both cancer and ME. I stressed how currently the only hope for treatment for Canadian ME patients was to hope for cancer.
Dr. Bested then spoke to the challenges in research and treatment, and Margaret Parlor spoke to the statistics that expose the unmet health care needs of ME patients. As a next step, Dr. Rancir asked us to provide an outline of what is expected of the Ministry of Health to make progress on biomedical ME research.
As the meeting ended, I also shared with Dr. Kancir my passion for triathlons - that I was the first person living with HIV to compete at the triathlon world championships and had represented Canada 3 times at the triathlon world champs. The last time I was well enough to race a triathlon was 2014. The medals from those last few triathlon races hold a lot of meaning for me.
As a reminder of what I was capable of before I got sick with ME, what I hope to be able to do again, and the critical importance of taking action, I gave Dr. Kancir my first place medal from the Wasaga Beach triathlon in 2014.
______________________________________________________________________________________
It may be helpful if Minister Philpott receives positive feedback for this opportunity to inform the new government of the health care needs of Canadians with ME.
Even something simple like: Thanks for hearing ME patients' unmet health care and research needs.
Email:
Hon.Jane.Philpott@Canada.ca
Twitter:
@JanePhilpott
