I Am In A Wheelchair Again: Rare Disease Patients Matter, But The Government Doesn’t Think Seem To Think So

I am now fully dependent on my wheelchair again. I can barely stand for a few seconds without my pulse jumping to 150+ beats per minute, and it continually rises if I stand for longer. I can’t breathe a lot of the time, even if I am simply sitting.

I am sleeping in my living room again. I can’t get upstairs so I can’t shower. I can’t even walk a few feet to get myself food, water or medication. I’m pretty much like a helpless baby at this point. Honestly, it’s difficult to even hold up my phone and exhausting to use my computer. I am barely eating. Fluid is filling my hands, I’m covered in rashes and am vomiting. I don’t know why this is happening to me.

My Plasma Exchange treatments keep getting cancelled due to nurse shortages.

You are all well aware that Plasma Exchange has given me my life back.

I have many conditions. Autoimmune Autonomic Ganglionopathy is the unofficial but working diagnosis. I also have Peripheral and Autonomic Neuropathy. There’s also POTS, Dysautonomia, Gastroparesis, Ulcerative Colitis, Celiac Disease, Fibromyalgia and more.

My immune system is destroying my body. You know the thing that controls your unconscious processes, like breathing, blood pressure, pulse, digestion, pupil dilation, body temperature and all that jazz? My immune system is destroying it. My immune system is destroying and intercepting my Autonomic Nervous System.

What is Plasma Exchange? You can read about it here. The post is called “So What Is This Plasma Exchange and Why Am I Doing It?

The jist of Plasma Exchange is that my blood is filtered through a machine that removes the antibodies that are attacking me from my blood. No antibodies means that nothing will attack me and my body can heal. It sounds magical, right? Well that’s because it is. And it worked.

The ability to walk, to eat, to be back in school and on my feet.. it was all mine again.

I was given a higher quality of life. Plasma Exchange changed my life. I thought I;d be sick forever until I started treatment. And clearly without it again, I will be.

I was okay… and now without treatment, I’m doing worse than ever. I need help.

Can you believe that my health, well being and ability to be a student rides on a healthcare budget… it is absolutely heartbreaking.

The admins at my treatment centre said they have done all they can do in terms of trying to apply for additional funding. Apheresis services, like Plasma Exchange, treats a wide array of patients, but they use it for rarer diseases, but not for a single mainstream condition like a popular cancer or something like diabetes. There’s no organizational voice to advocate for Plasma Exchange, so the patients who need this are ignored. We need to change this. Rare diseases matter too.

Plasma Exchange treats many rare medical conditions. However, there are many rare diseases, and thus many patients. This means that a huge population of patients are not getting the care or attention that they need.There’s no strong patient advocacy groups out there pushing for funding and patient care for things like Neuropathy, Sickle Cell, TTP, uncommon cancers and organ rejection the way we all know about Breast Cancer, Diabetes and other popular disease organizations.

So here we are. Unfortunately, the government doesn’t care about rare diseases and their treatments, so nothing is being done. It’s not fair.

I can’t just sit here and do nothing about this. If you have a moment, I am hoping that you can help me. I have written a letter, and I was hoping that you could flood the Ministry of Health with emails containing this letter. I need their attention… I need them to know that those of us with rare diseases matter. It’s not just major diseases that need funding. Those us of with rare diseases are important too. We must band together and try to make a change. I am singlehandedly trying to get more funding for my treatment. I need your help. Please.

You simply just need to copy, paste and email this letter. I don’t mind if you barely read it, I just need help. I need treatment. I deserve to be able to walk. I just feel useless just wasting away, being unable to eat or move. I love the support that you have all showered me with, and would truly appreciate this help.

This is the Minister of Health’s email address:
ehoskins.mpp@liberal.ola.org

This is my letter. Just copy, paste and email it. It’s heavily indented, so you need not read it if you don’t want to, but you’ll will know where it ends. Or, if you have the time, print it and mail it to the Ministry (Don’t forget to sign your name in the bottom, it’s bolded so you won’t miss it. It’s kind of long):

Dear Eric Hoskins,

Toronto General Hospital’s Apheresis Unit is in desperate need for additional funding. Patients are facing constant and continual treatment cancellations due to a lack of nurses. It is the patients who are facing the consequences of this nurse shortage.

There are only three major Apheresis Clinics in all of Ontario, with thousands of patients in need throughout the province. With such little treatment centers available, it is vital that these clinics, especially Toronto General Hospital’s Aphresis Unit, be adequately funded.

Apheresis services like Plasma Exchange and Photopheresis are vital parts of Ontario’s healthcare system. These are important and sometimes the only treatments available to manage organ transplant rejections, kidney disease, progressive detrimental autoimmune conditions, Myasthenia Gravis, lymphomas and leukaemia.

While Apheresis services may not treat major political conditions, such as diabetes or breast cancer, it does treat a huge variety of severe conditions and deserves additional funding. These less mainstream conditions do not have strong advocacy organizations to fight for them, but together, these rare disease patients represent a large population. With so many patients in need, it is detrimental to have a nurse shortage that keeps patients from being able to access the treatments they need.

Patients must travel hours to get to Toronto General Hospital to treat their life threatening and severely debilitating conditions. However, these patients are facing constant cancellations, which threatens not only their quality of life but their ability to survive. These cancellations occur within less than 24 hours of notice due to nursing shortages. One can imagine that cancer patients really don’t have the time to waste with continual cancellations, rebooking and more cancellations of their treatments.

It is very frustrating to see Toronto General Hospital’s Apheresis Unit have many machines, but not enough nurses to run them. For a sick, relapsing patient, to see many live saving machines yet not enough nurses to run them is heartbreaking. The solution to their medical problems is there, so close, yet still inaccessible due to a nurse shortage. Because the treatment centres are so sparse, these patients cannot go to another Apheresis Unit when facing treatment cancellations. Patients are suffering.

On top of this shortage, if a nurse is called in for an overnight emergency, their daytime patients are then cancelled on the day they expected treatment because there is no nurse to fill in. If a nurse is sick, their patients get cancelled, because there is no nurse to fill in. This nurse shortage is costing the healthcare system more than it saves.

Complaints were filed to Toronto General Hospital’s Patient Relations, but they are doing all that they can within the budget they have been given. This is their response.

“Despite numerous changes in the Apheresis Unit, including extending to a 10 hour working day, the unit continues to be challenged by high volumes of procedures over the last few months. Our volumes have grown beyond what we are currently funded for through the Ministry of Health. There are also staffing shortages, as you identified in your note. From what I understand, in recent months the unit has performed 400 procedures over and above what we have capacity and funding for. Clearly, this is an area that is growing and which needs additional resources to serve the high volume of patients who require apheresis services.

Currently, the clinic is managing this day-by-day and the medical director has had to cancel non-urgent procedures, some at the last minute, due to high volume and high acuity of patients. We do know that this causes a great deal of distress to all of our cancelled patients and it is the hospital’s goal to be able to accommodate this continually growing patient population.

Unfortunately, we are not able to provide you with the guarantee that you will have no future cancellations of your appointments. I can assure you however, that this issue is being prioritized by our Senior Management, who are currently reviewing our apheresis volumes and what we have funding for through the Ministry of Health, with the intention to seek further funding for this area.”

This is where the Ministry of Health must step in. Patients are suffering. It is unfair to be unable to access the services that are required for these patients to lead even a standard quality of life. These patients are unable to work, study or even take care of them. They then require help doing basic tasks, such as showering and eating.

Samanta S. is a great example of the impact of this nurse shortage. Her immune system is destroying her Autonomic Nervous System, which controls one’s unconscious processes, from breathing to blood pressure to digestion and more. This left her in a wheelchair and struggling to eat. By using Plasma Exchange to remove the antibodies attacking her, her heart and breathing issues became under control, allowing her to walk again. However, throughout August, several of her appointments were cancelled. She is now in a wheelchair again.

Unfortunately, she is not the only patient who has relapsed due to a lack of nurses.

Ironically, the lack of nurses is due to budget restraints. However, patients like Samanta have ended up in Urgent Care Centers, trying to reach out to varying specialists, which strains the healthcare system’s costs even further.

To go into remission, Samanta will have to undergo even more treatments than she needed prior to her relapse, which is just an additional cost to the healthcare system. She then becomes a priority patient, at the expense of other patients who will then face cancellations for their treatments. This cycle can, will and has caused many patients at the Aphresis Unit to relapse. This requires patients to need even more rounds of Aphresis services, which puts an additional strain on the system.

As one can see, this is an expensive and illogical cycle that costs the healthcare system much more than it saves, a cycle means that no patients will get the basic care they require.

Some of the Canada Health Act’s main principles are comprehensive access to medically required treatments. This is not being met.

Apheresis Unit patients are unable to access the services they need to lead a high quality of life and be a productive member of society. With so little Apheresis Units and so many patients, it is vital that Toronto General Hospital’s Apheresis Unit be given extended funding to hire enough nurses to manage their patient load.

Patients should not be suffering, this is not what Canadian’s prided medicare is about.

I am deeply concerned about Toronto General Hospital’s nursing shortage and demand additional funding.

Thank you,
[Your name here]

I truly appreciate your help in this manner. It is frustrating to be suffering and unable to do anything about it. I don’t think anything will actually be done without your help. I urge you to take a few seconds to send this email.

If you are up for it, a printed physical letter would be wonderful too.
This is the Minister of Health’s mailing address:
Ministry of Health and Long-Term Care
10th Floor, Hepburn Block
80 Grosvenor Street
Toronto, Ontario M7A 2C4

 

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