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America living in Australia - worth it to come home?

Hello. I was recently diagnosed with Relapsing-remitting multiple sclerosis (RRMS). Luckily for me it was caught early and I was able to leap onto medication before the lesions had a chance to spread.

I currently take a daily dose of fingolimod (as hydrochloride ((GILENYA)) 500 mg. Between the early detection and medication, I am still pretty capable and mobile, with only slight gait issues, waves of dizziness and the fatigue.

THE FATIGUE. No one ever tells you that, above all, this is what you'll be dealing with and what will eventually ruin your life. I am 50 years old and have had to stop working/take a disability pension merely because my brain shuts down - HARD - after a few hours, let alone a full work day.

I am incredibly fortunate, I know, to live in a country with public healthcare and a decent pension system. My gilenya costs me, on average, $6.00 a month. Not bad considering it has a full cost of $2200.00!! However, my wife and I are considering moving back to the US and I am TERRIFIED that I will not be able to afford my medication. We have researched, read, and fretted but I am still no closer to an answer.

Canada has a generic for this medication, but I think the US wants to block us from buying AFFORDABLE meds from across the border, north or south. If anybody currently living in the US with MS, who takes this or a similar mediation, can share with me their stories of how they have learned to cope? What opportunities were out there/support programs to assist with the sheer cost of living with MS in the United States?

I'll be contacting the Multiple Sclerosis Society (https://www.nationalmssociety.org/) to gather information as well, but I couldn't think of a more reliable source for information than from those who were forced to endure as well.

Cheers

Robert

  1. Hi . I am glad Gilenya is helping to keep your MS at bay. It must be scary to make an international move when you have a chronic illness that requires expensive testing and medications. Many manufactures over copay assistance programs and their income limits are pretty generous, sometimes up to four times the poverty level. Several charities also offer assistance. Here is an article from one of our advocates with more information: https://multiplesclerosis.net/living-with-ms/apply-copay-assistance. Will you still get your disability/pension when you move? At your age, you will also have to buy your own insurance unless your spouse works somewhere that provides insurance. So those are all things to consider. I hope you get lots of responses from the community and that you are able to return to the United States, confident that you will be cared for. Best of all wishes! - Lori (Team Member)

    1. Thanks for the response, Lori. I'll check that link out. Cheers

      1. The medical system in the US is definitely driven by profits. Our retirement supplement of social security (SS) is not set up to sufficiently cover costs during retirement and it is necessary to have other income as well. Both my husband and I get SS and it is based on our work history and earnings/payments into the system over the years. IF you haven't paid in enough, you will get nothing in SS benefits.
        As for the cost of medicines, all of the manufacturers have assistance programs but again it doesn't cover everyone.
        You don't say what might bring you back to the States, but I would make that move cautiously and only after evaluating all the factors that will change once you leave Australia. Also, will you be able to return to Oz and have those benefits if things don't quite work out in the US?
        My apologies if this is a less than enthusiastic response to your questions. Living with MS is tough enough without having to make such a significant life decision. best, Laura MS.net moderator

        1. I appreciate your comments. Thank you.

          I am in the process of filing for dual citizenship with Australia, meaning I could come back at any time. However, the process of reinstating my pension, etc. would be a nightmare. A doable one, but a nightmare nonetheless.

          I miss my home, my family and the friends I grew up with. Also, my wife hates (HATES) living in Australia and it wears on her daily. I won't go in to the specifics, but she definitely has her reasons. The daily stress of knowing how miserable she is only drives me more to get back home, but I am terrified the move, at my age and without being able to actually work, would lead us to total ruin. I can't tell you how ANGRY I am that medications such as this, and others - insulin, etc. are controlled by greed and not care. NO ONE should have to make a decision between the most basic commodities and death. ... but I digress and do not want to start a political rant that will eventually solve nothing.

          If it were up to me alone I would stay here. For certain. Between the pension, public healthcare and other assurances, I could eek out a meagre living. Nothing posh by any means, but a roof over my head, food on the table and the medications I need - but the (emotional and stressful) price of doing so is extremely high.

          I appreciate the support and the information. If I could find a way to make it work in the US I'd move back, no worries. I've been researching the costs of insurance, meds, etc. and unless I can manage to hold down a job - which the mental fatigue makes difficult as f**k, I would. If we DO go back, I'll have to find a way to make it work. Hopefully with a change of diet and lifestyle I can regain some of that energy I once had.

          Who knows? Maybe I'll win the lottery while I'm at it. LOL

        2. My heart goes out to you, . I can't imagine how it feels to be unable to move back to your home country because of a chronic illness. I hope you find a way. Thinking of you. - Lori (Team Member)

      2. I am an American but have lived in Canada for 25 years. When I moved here I thought I was healthy. Silly me. When I left America, I left a great job as a paralegal with great salary and insurance benefits. But, then I had insurance for myself, but to cover my entire family with six kids, it cost me $500 a month and the firm paid the same. When I came to Canada, for an entirely new life, kids were grown and on their own, and I escaped a hellish marriage to start over. When I got here, I had to have a full medical exam and background checks to allow me to apply for permanent residency. My first trip to the doctor blew me away. When I went to the desk to pay, they waved me away. My Canada health care card at $10 a month covered it and pretty much basically every thing else. When I finally realized my symptoms got worse and worse and finally got diagnosed here with PPMS. Sounds scary, but MS is MS no matter how you slice it. Basically living in the States again was not an option as healthcare was out the roof. When I was diagnosed, from my medical history, I have had it since high school, probably even before, so PPMS was the call. When I got here, meds for PPMS were not available but If I wanted to try some, it would have cost bundles, which I didn't have. I opted out on that one. I came here when I was 48, I am now 74. I had ignored all the usual symptoms my entire adult life, but who had time? Six sons and a useless mate. If I were anyone living outside the US and having medical assistance where you are, I'd think long and hard about the financial effects you would face. Here I still get my Social Security payments and my husband today gets have of what I get. He has Canada pension and I get half of that. Being unhappy where you are is tough when you are facing totally different financial realms if you relocate. But, again, if you spouse is unhappy, it is worth the look see and make a decision on what you have and what you will have if you move.

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