Treatment affected by geography : It has not escaped my... - NRAS

NRAS

36,574 members45,179 posts

Treatment affected by geography

Damaged profile image
19 Replies

It has not escaped my attention that the treatment available is completely dependant on country of origin . I am very grateful that I live in Canada. It is also because of personal insurance that treatment costs are manageable. I currently have a Cardiologist, Rheumatologist, Internist, Gastrointerologist, Neurologist, Hemotolgist, Opthamologist, Orthopetic etc.. I have had endless, cat scans, MRI", nerve conduction tests, endless blood tests on and on. It has undoubtedly costs 100,000. But it took a year to loose a lifetime of savings . Disability sucks in all aspects of the individuals life but also for family and friends. I rely heavily on my Rheumy and see her as my primary health care provider. I see her once a month or more at times. She also calls me at home as son as there is an issue. I cannot imagine not having her on my side. I could not bear once every six months. My heart goes out to all of you. I also acknowledge the same may not be true for someone without insurance.

Written by
Damaged profile image
Damaged
To view profiles and participate in discussions please or .
Read more about...
19 Replies
NorthernMoose profile image
NorthernMoose

I hope I am as lucky as you are with all your doctors! I am just starting my RA journey (have had pain for years but finally just got diagnosed few weeks ago) and I hope to be referred to all the right doctors.

Thank you from a fellow Canadian!

Damaged profile image
Damaged in reply to NorthernMoose

Where are you located? I will happily help you navigate our systems. There are all kinds of programs here to make life easier. The system, like all systems is flawed. Please stay clear of all these crooks who will try to convince you that you eyed them to get benefits like DTC. I can guide you without taking 30-40% of what is due to you. Government of Canada has simplified it to put these companies out of business. There is a great article by CBS. However, what will require your undecided attention is your health. The rest will be dealt with later. I am sorry to welcome you but so happy you have a diagnoses. At least now doctors will not treat you like your crazy lol In defence of our dedicated GP's it is an awesome burden. They are given ten minutes to listen to patient and decide on a course of action. Because autoimmune disease affects people in very unique ways it is particularly difficult to diagnose. This site will prove invaluable on your journey. The true experts are people living with these conditions. I sincerely hope your Rheumatologists finds what works for you. Hang in there , you are not alone, hugs.

NorthernMoose profile image
NorthernMoose in reply to Damaged

Thank you very much , people like you give me hope!!! I am from Ontario Canada and am happy I have Ohip. The amount of tests and appointments I have been through are numerous!

I look forward to talking more and hearing what helps you and learning what to expect after diagnosis.

Thanks again!

Damaged profile image
Damaged in reply to NorthernMoose

Hi NorthernMoose, I saw my Gatroenterologist this morning. I made it clear I was not interested in any more scopes. I will not try Actemra. I am not sure where you are in Ontario but you are lucky. The Rebecca MacDonald Clinic is at Mount Sinai in Toronto. I would ask for referral. Agurex is the name of the life science clinics that have developed Jointstat test for seronegative patients. I strongly recommend getting my ehealth app. This will enable you to get all lab results directly. Also ensure you get copies of all test results. This will ensure no duplication. Keep in mind, no two people are the same. We all respond in unique ways. It is important to find a team that works for you. Keep a diary. Track all medications, tests and doctors. It can quickly get out of control.

Read from legitimate sites only, this one being a great one. Web md is also very helpful. It will put everything in terms everyone can understand. Build a strong support team. There are endless adjustments to make. Do not be afraid to acknowledge how you feel. Reach out whenever you are unsure of treatments or protocol. MyRA is another site I find very beneficial. Do it at your own pace. Only you know how much information you need. Do what works best for you. If you are not confidant questioning your doctor, bring someone with you. It is helpful, particularly if you are not well. They maybe better able to remember details. If things are moving to quickly, slow them down. There is no cure only remission. So do what it takes for you to live your best life. Hugs, Hang Tuff👍

medway-lady profile image
medway-lady

Of course that is good news for you, but what happens in Canada if your not insured ? in the UK the NHS may not be great for everyone, but I think its good. The local hospital saved my life in 2014 and its RA services are good too. And its free at the point of use, in fact of course its not free as we all pay into it via our taxation system. But it doesn't matter how poor anyone is the NHS will assist that person. I know it could be improved (and I do have private health care too) but whether its open heart surgery or a stroke or varicose vein surgery or just a visit to the local GP to the Air Ambulance taking someone to hospital after a bad crash cost is not a worry.

Damaged profile image
Damaged in reply to medway-lady

The doctors and tests are covered by medical services for all Canadians, however, drugs and assistive devices are not. If you do not have insurance coverage there are many options available but there is a definite difference. For instance, the use of Biologics. No matter what country we live in the same applies. MSP has phycisian s guide to treatment, this applies universally. The pharmaceutical companies are also a great source of funding. They have teams who will process pre approvals and help to fund short falls. No system is perfect and I did not intend to offend anyone. I was simply appreciating the benefits of being Canadian. There are very few blessings these days so just thought I would acknowledge mine. The other blessing is my Rheumy, she is amazing.

medway-lady profile image
medway-lady in reply to Damaged

We get all meds on the NHS, so its not always easy but to be honest its a system that works for the huge majority of people. We are blessed that no one is dependant on a company for help. What happens in a short fall ?

in reply to medway-lady

I too am proud to live in Canada and there are wonderful things about our government health plans...but I shrudder to think

"what if I didn't have extended insurance?" ...with all the meds for both my husband & I, well we would be broke.

Our MSP does cover meds if you are in a low income bracket.

We are considered middle class. So no help there. The cost of housing in meto Vancouver is outrageous....sorry for ranting....

I got a letter in the mail instructing for us to register for Fairpharmacare. Don't know much about Fairpharmacare do you Damaged?

Damaged profile image
Damaged in reply to

Yes, once you reach a certain point they pay the difference. My husband is a plumber and I have benefits via GWL. Mine cover 90% and his covers the difference. With the Biologics, MSP also reimburses insurance companies. The other area is DTC (disability tax credit). With RD you qualify. What you can do if you are not working is have spouse claim caregiver amounts. They also allow ten years back time.

in reply to Damaged

I haven't worked for 1 year now. I am being covered by GWL through my work, but if I don't go back to work soon I have to apply for CPPD.

Thank you for all your advice.

Damaged profile image
Damaged in reply to

Be forewarned, GWL will ask for money back when you get CPP disability. Once approved for CPP they ask for anything paid out up to CPP amount. Basically they are giving you a loan which they expect to get back.

in reply to Damaged

Thanks for the warning. I'm going to my rheumy on the 15th with more paperwork from GWL. I hate paperwork, but I am greatful for all the help GWL has given me.

My RA seems to be calming down, and this paperwork is asking my rheumy if I could work part time.

in reply to medway-lady

I think when Canadians compare healthcare systems, we usually compare against the USA, as they are our closest neighbours.

Until I joined this site, I knew nothing about the NHS.

I saw a documentary on the different healthcare systems around the world. France won handsdown. UK. Canada & Cuba's Healthcare system held a good rating, but nothing compared to France.

I wish I could remember the name of the documentary. It was an eye opener. :)

AgedCrone profile image
AgedCrone

You are certainly fortunate to have such a caring rheumatologist. Unfortunately here in UK you would probably need Private Medical Insurance to have such a relationship & once you are 65+ the cost of that becomes prohibitive for most people. ......especially when you think most over 65's have paid a National Insurance premium for 40+ years to receive treatment on our NHS.

If Private medical insurance were introduced alongside the NHS provision.....things would probably not improve as we don't have enough doctors to provide more appointments.

Now with our increasing & aging population we do indeed have long waits to see not only Consultants but also primary care providers. It is not unusual to wait three weeks to see your GP, & most of the time it's a different doctor so there is no continuity of care....except what the next doctor sees on his computer screen notes.

One day things may change but I fear not in the near future.

Eiram50 profile image
Eiram50 in reply to AgedCrone

I've always found this interesting (UK) , the differences even between Scotland and England. I am from edinburgh and I would agree , if I want to see the gp I'm registered with, I can wait a few days to a week or so but if I'm happy to see any of the gp in practice, I always get to see them the same day?

Equally, in terms of treatment, things moved very quickly for men in relation to being prescribed biologics (within 3 month period) after seeing rhuematologist -although I did wait nearly a year to be seen by him. I now see him every 12 weeks.

There just seems to me a significant difference within U.K. Itself - I could well be wrong though!

In terms of our NHS, it's a sadly depleted and under funded, under staffed service, but I thank god for it each and every day.

In a magical world, health, as a universal need, Would see a universal service that met this need, regardless .🙄

Damaged profile image
Damaged in reply to AgedCrone

One thing I have done is insist on copies of all tests. My ehealth enables me to keep records of all blood work since this started. The benefits are numerous. One , when I see a new doctor I pull up records so no duplication. I also like that I do not need to justify pain meds. The other great asset is understanding your condition. I look up every test, what it means, what the parameters are and how it affects all conditions. The one thing that becomes apparent is they (doctors) do not tell you everything. I found all long list of diagnoses my doctor kept from me. This is not only annoying but dangerous. The Actemra being a prime example. Had I not gotten results I would have been unaware of diverticulosis. This could have led to a perforation of my intestine. Now they want another scope. I said no. I have no intention of trying Actemra. There are many other options. I also refused because anesthesia gives me severe migraines. My Gastrointerologist suggested doing it with no anesthesia. No thank you. Seriously, it is as If they forget they are dealing with a person not a product. I suggested he go first lol he has a good sense of humour. He is also SO Young. It makes me feel old already.

Witness2 profile image
Witness2

It sounds brilliant to have such access to your rheumatologist, that must be very reassuring. I gather it's not always straight forward, that insurance companies play hardball over what they'll pay for. Is that true in Canada? I heard this more about America. Access to rheumatologists here (let alone all the other medics in your long list!) can be very patchy. I'm fortunate that mine in Surrey is very hands on. We moved to another county (area) three years ago which is 100 miles away from Surrey and after 6 months of the new team I hurried back to Surrey! We can at least choose where we are treated - as long as the two teams agree. I would much prefer the control your system appears to give you. Be well and thanks for thinking of us impoverished Brits!

in reply to Witness2

I've never had to play hard ball. Canada has a government healthcare and some jobs supply us with extended medical. Before RA, I never used my extended medical, never needed to bother. Whatever prescription drugs we needed, we just paid for. Then I would make a mental note to send it into my insurance to be repaid. Of course I'd forget, as our drugs are way cheaper than the US. Now I have given my extended insurance to our pharmacy. I pick up my meds for no more than $10.00 If I went to Costco it would be about $6.00. But I don't want to wait in a long line to save $4.00

Mandalou profile image
Mandalou

Though the set appointments are every six months I feel very supported because if I ever panic regards my RA and its ever changing symptoms one call to my Rheumy nurses and they get me in for an emergency appointment. I'm not on the phone every month so they know I'm not taking the mickey.

i love hearing how other people get on in different countries and we are very lucky to have this facility hear to share our experiences.

Mx

You may also like...

Treatment about to start at last!

well with the diagnosis and it is only now the treatment is due to start that I am starting to...

Coming off treatment.

Since being being on treatment for the last 4 months i can honestly say i feel no better, infact the

Does diet affect pain?

Topical Treatment for RA Joint Pain

so I now consider my symptoms to be manageable. Also, I no longer get the seriously debilitating...

Paxlovid Antiviral Treatment

department store!) I tested positive last Saturday. After I registered my positive test with NHS I...