First, I have been struggling to get this post ‘just right’ before finally putting it on the blog. And then something happened.
Today I woke and followed my usual routine: coffee and quiet time with my iPad while I slowly come out of my post-sleep-zombie-trance. When I opened Facebook the first post on my feed was an obituary. Kasey Rideout Pedersen lost her battle with Lyme Disease on September 22, 2016. Kasey’s obituary wasn’t the first Lyme-related one I’ve seen, however this one struck me immediately; she was 29 years old, a wife and mother of two young children. Over the next hour, I saw two more posts over social saying their farewell’s to Kasey and I found myself combing through her Facebook and Instagram accounts while my heart slowly sank. Not knowing or having any contact with Kasey myself, I still felt compelled to do something today in her honour, and that is why I am posting this today.
Second, writing this blog post was done over the last four-to-five weeks. I haven’t been able to sit and just write. Things haven’t been easy. Since my last post I’ve taken up video-blogging (which I also haven’t kept up on lately), but in my second video I talk a bit more about treatment. I suppose that content would substitute for a post I would have written, so feel free to head over to YouTube and check it out by clicking here or scrolling to the bottom of the page
In writing over such a long period, I feel that the content and tone of this post is illogical. It’s original intention was an update after my meeting with Kathleen Wynne, the Premier of Ontario. Then it took a turn into frustration and anger, or arguably a “rant” over the sheer sadness that is Lyme Disease and how it causes suffering to thousands of people.
Third, my apologies for grammar and spelling errors, or if the read-ability is poor. I’ve attempted to edit this a number of times and haven’t been able to grasp it too well due to the cognitive effects I’m having and the distractions thanks to physically feeling unwell. Today I’ve decided to give up on editing and proof-reading this for the 10th or 15th time.
Settle in. This is long.
Lyme Disease, Do Politics Come Before Patients?
After an unexpected meeting with our Premier of Ontario, Kathleen Wynne I felt like I’d finally made a bit of progress in the fight against Lyme Disease. Premier Wynne agreed to meet with us while she was in town for other business, her genuine interest and compassion left me feeling optimistic that change was possible. Real change.
I provided Premier Wynne with a copy of my blog posts and some general points I wanted to make sure to mention when we sat down with her. She took all of this information and said she would have it forwarded to the Minister of Health and Long Term Care, Dr. Eric Hoskins.
A couple of weeks later I received a call from the Minister’s office. I spoke with one of the Policy Advisors, after introducing herself she asked me if I could share more about myself. This week had been hard on me. I’d barely left my house, moving only between my bed and the couch. My energy was very limited, so in response to her question, I’d asked if she’d read the information about me that Premier Wynne had passed on. She told me she had only read parts of it. This was the first sign of disappointment for me. I proceeded to explain my story, all of which was in writing and in their hands. This took me about 20 minutes to re-tell, all the while I was fevered, exhausted and barely able to hold my phone due to the physical limitations I was experiencing that day due to this illness.
I told my story, from the Spring of 2014 until the day we spoke in August 2016. I described the difficulties with our health care system and how it can take a long time to get an appointment with a specialist. For myself, we were discussing heart complications and even possibilities of some cancers. By this time we’d already spent a year and a half seeing doctors and specialists, if there was a chance I was going to keep deteriorating as quickly as I had been between June 2015 until November 2015, we knew we needed answers fast. That was why we went to the Mayo Clinic. Fast-forward a bit, and I finished by explaining how I chose my Lyme Literate Doctor (LLMD) and his qualifications. The Policy Advisor apologized and empathized with my situation.
Next I was told what our Province has been doing. They also mentioned that the Federal government has “intentions” when it comes to Lyme Disease, but it hasn’t been moving fast enough and this is why Ontario has decided to take steps forward as a Province. I was told about the stakeholder group in place, which I am familiar with – it is comprised of many people, including medical professionals, CanLyme board members and even patients. I asked if there was room for one more in this group, there isn’t. I cannot stress enough that I deeply appreciate the efforts of this group and that they’ve taken action on awareness and prevention. This is a KEY step in reducing the amount of people infected with Lyme Disease, and the number who could progress to become as sick as I am. Lyme Disease falls within the realm of public health, and prevention and awareness are vitally important.
I was told that during their consultations various inquiries were made, including with other countries. We discussed the difficulty in coming up with a policy that is meaningful and accurate when there are so many various symptoms of this disease, as well as the inaccuracy of serological tests and different agreed upon methods of treatment throughout the Lyme Disease community worldwide.
Due to the difficulties described above, the Province is now starting its own research. When I was told about this I was really impressed that this step was being taken.
My next question was this:
“How much funding, in terms of actual dollars are being allocated to this?”
The funds available have yet to be determined. Which leads me to assume that research has not started.
My second concern with conducting our own research is that it is not timely. There are European Countries who’ve been treating Lyme Disease for decades. With decades of acknowledging and treating Lyme Disease comes long term studies and research that spans over long periods. Conducting new research is absolutely vital; but if this new research is to determine the best treatment methods and evaluate the outcomes? We’re looking at years before conclusions can be made. If this research is done as a review of current literature, I also see a lot of value in this – but would the inclusion criteria be? Would there be any conflicts of interest? If you’ve watched the documentary, “Under Our Skin” you understand how much concern there is when it comes around conflict of interest.
I was informed that The Minister has written and sent a letter to doctors and nurse practitioners, bringing to their attention that Lyme Disease as a diagnosis should not be made once all other options are exhausted. Lyme Disease should be on their minds when dealing with a patient, and it was also said that this letter acknowledges Lyme Disease is a clinical diagnosis, not based on a positive serological test. I am very happy that this letter was sent out, and I pray it changes the lives of others by bringing forward a more timely diagnosis.
My goal in this discussion was to find out what our health care system can do for me, and people like me. Even though we don’t have the funding allocated to do the research yet – does that mean I continue to be abandoned by our system? Without saying it, the answer is “yes”. As a Registered Dietitian my education didn’t cover politics, but common sense tells me when I ask a direct question and am given an answer that echo’s a previously stated detail regarding what has already been done, and it is irrelevant to my question … that is the politically correct way to say “no” or “I don’t know”. Reality is that I’d feel substantially less frustrated if someone would just be honest. These round-about “answers” are insulting on a such deep level.
My next question was regarding disability claims. My long-term-disability claim through Blue Cross has been denied and in speaking with many Lyme sufferers this is not uncommon. I asked if their office would simply just write a letter of support, just acknowledging this disease so that I could send it in conjunction with the report my doctor will need to complete. For this I am being referred to Disability Services. I was told the request for a letter is not something their office is familiar with, and that question will be answered by Disability Services. Disability Services has not contacted me.
When I asked how to recover the money we’ve lost, I was directed to follow up with my claim through OHIP. Since this conversation with the Minister’s office I received a letter in the mail from OHIP regarding my claim:
Only emergency out of country services are reimbursed.
What is the bottom line?
Quite simply, there are no answers.
[here comes the rant]
I can fully appreciate that a policy advisor in the Minister’s office, and likely the Minister himself – won’t have the answers. I can understand and respect that. Referrals to other government agencies are appreciated, but they really don’t help. Everyone seems to say “sorry, I’m not sure, I will pass you onto someone else.” This is a cycle that never ends. Especially when you often don’t hear back from anyone.
The Minister of Health and Long Term Care is a doctor himself. I’m going to throw one of my own opinions out here:
Minister Hoskins should be knocking at Justin Trudeau’s door and demanding that the Federal Government’s “intention” turns to action. If I were in his shoes, and had heard from countless people with stories like mine, I couldn’t sit wait – I would feel compelled to stand up for the thousands suffering, most of them in silence.
I’m not unrealistic, I understand how painfully long it takes to put policies and procedures into place, especially when the evidence is so mixed and in its infancy – I can appreciate this… But, someone needs to get loud, be passionate, and “light a fire” under our Federal Government to start to make real changes.
What if everyone continues to be polite and politically correct about this? Change will be slow and painful. Slower and more painful than it will be for me to get over this illness and back on my feet again, and believe me some days it feels like time is standing still because you are in so much pain.
The moral of this recollection of my conversation with the Minister of Health and Long Term Care’s office?
1) There are no answers, and if there is an answer someone will be hesitant to be straightforward,
2) There is no help for someone who has late stage Lyme Disease when it comes to supporting their treatment and/or investigations from an out-of-country doctor, and
3) The mandate set forth to Dr. Hoskins from our Premier of Ontario has not been fulfilled when Lyme Disease is in question.
The following is an excerpt from this mandate:
Our government continues to deliver better access, better quality and better value for money for Ontario’s health system. As Minister of Health and Long Term Care, you will lead the shift toward a sustainable, accountable system that provides co-ordinated quality care to people, when and where they need it. You will partner with administrators, health care professionals and patients to achieve our shared commitment for a system that in there for generations.In pursuit of our commitment, I ask that you keep in mind three key goals: people receiving the right care at the right time and the right place; an accountable, efficient and transparent system; and promoting healthier lifestyles for Ontarians through shared responsibility across government.
So, for me and others like me? We continue to be abandoned. Yes, we have family doctors still. And if we are lucky our family doctors are supportive, and we do get the same OHIP services as everyone else, such as doctors visits and blood work. That much hasn’t changed. The pain and agony we’ve experienced physically and emotionally takes an immense toll on us, and that doesn’t even touch the financial toll it takes. In 10 months we’re now at $124,000.00 – most of which is debt. At 30 years old you don’t have any savings that comes anywhere close to this. People are remortgaging and losing their homes and living out of their cars, many ending their lives because the pain is too much to overcome. Before my diagnosis when I was in so much pain and had no idea what was happening to my body, I absolutely had the thought that “if this all ended right now, if I just didn’t wake up – that would be ok”. Thoughts like these did not consume me, but they have for others; I say this with a very heavy heart. For us, we have drained our personal accounts, we’ve used all of the profit from our business, and now it has meant considering bankruptcy and job loss for our employees. We’ll fight tooth and nail to avoid this, but don’t think for a second it isn’t an option we’ve had to consider.
Lyme Disease doesn’t just affect the infected individual. It affects their spouses, friends and family. My husband who’s been absolutely amazing throughout this has had to take on the burden of trying to work harder with our business to bring in more money to pay for this illness. He works longer hours than any person should, often skipping sleep once or twice a week to keep job-sites on track. He has had to watch me go through excruciating pain, uncontrollable twitching and shaking, being rushed to ER in an ambulance – while feeling completely helpless, and likely from time-to-time hopeless. All of this takes a very real extreme mental and physical toll on a person. That is just a prelude to who else this affects. Parents, grandparents, aunts and uncles, cousins and friends are scared and helpless. Employees know in the back of their minds their jobs could be gone tomorrow if we start to fall deeper into this hole.
Simply put: Money is put before health. It is heartbreaking.
We’re lucky for the amazing support of our friends and family, as well as our community – this has helped more than I could possibly describe. It reminds me daily that I’m not just fighting for myself, I am fighting for everyone. This should not happen. No one should be this sick and left to fend for themselves.
What do you do when you are too sick to work, and can’t pay your rent? You lose your home.
What about the people who can’t get loans, or don’t have homes to re-mortgage?
What do you do when you have no income, and have been denied disability to pay for the necessities of everyday living, such as food, shelter, water and heat?
How does someone get better?
If their progression and symptoms are somewhat like mine, they’ll end up homeless or bound to their bed, eventually in a long term care home if this hasn’t killed them yet.
As you read this you may feel the anger and frustration I felt while writing this. This started as a recollection of a phone call, and turned into a cry for help for people suffering in silence. I was hoping to speak with the Minister himself. I want to say these things to him personally, and I hope this message gets through. It is wrong and it is heart breaking that our Country isn’t stepping up to the fight against Lyme Disease when people are suffering.
Dr. Hoskins is a family doctor and renowned humanitarian, he has spent almost a decade as a doctor and humanitarian in war-town regions of Africa and around the world. This is a humble service to provide. What about the sick and suffering here at home?
Rest easy Kasey.
Sharing is caring ...