Planning extended travel abroad-- what to do about DMD's

[mmpetunia]

I'm planning to go on an extended travel trip, up to a year or more abroad. I will be visiting various countries and will be away from home and a steady source of income (though I will have some ongoing income).

I'm unsure what I can do about medications. I am currently on Tec and I am having really great results. I would love to stay on it but I am scratching my head on how to make that happen. I will not have enough money to purchase an insurance policy on the insurance exchange so I will not be able to remain covered by insurance while I travel. I will get a travel insurance policy but these have pre-existing condition clauses so it will not cover anything MS-related.

Obviously, I want to stay as healthy as possible while I travel so I can enjoy it and not risk permanent damage to my brain/increasing disability. I know there is newly available generic Copaxone available, but I did very poorly with the injections and had relapses while on it as a result. Are there any other meds that are available in generic form?

Another thought I had was to see about purchasing Fumaderm while abroad and continue taking that while traveling. Has anyone else looked into this as an option?

I would really appreciate any advice on what I can do to realize this dream of traveling abroad while not risking my health in the process.

Thanks!

[mmpetunia]

Bueller?

Anyone have any thoughts?

Feel free to PM me as well. I really want to go on this trip.

Thanks!

[ActiveMSers]

mmpetunia, travel insurance often does accept preexisting conditions if you purchase the insurance at the same time you make your first deposit on your trip. Your situation is tricky if you missed that window. It is even trickier if you don't have health insurance period. Can't you stay on, even with Cobra (if you are in the US)? There are no easy answers.

I'd approach the drug manufacturer and see if you can work out a temporary solution. It just might work. Have fun on your trip! Where are you going?

[throwaway123]

You can also try purchasing dimethyl fumarate from a compounding pharmacy. I believe that it should be quite cheap, as it is easy to make.

[mmpetunia]

"travel insurance often does accept preexisting conditions if you purchase the insurance at the same time you make your first deposit on your trip."

Thanks so much for your response

Dave, can you explain a little more what you mean by "first deposit" on the trip? Do you mean when I buy plane tickets?

I can't afford the COBRA payment, which would be somewhere close to $800/mo to keep insurance going here in the states while I travel. I considered getting insurance through the exchange but even that is running over $400/mo. I will have a meager income plus savings but not enough to cover travel expenses and a monthly payment that high.

I will keep looking into options to maintain insurance as that would be an ideal situation, but my guess is that it is unlikely. I haven't heard that travel insurance is dependent on maintaining insurance at home-- do you know where I can find more information about this?

I haven't booked anything for the trip yet, its still very much in the planning stages. I'm planning to go at the beginning of next year but I haven't fully decided where I will go yet. I'd love to go everywhere but I am also trying to balance quantity vs. quality-- I want to really have a chance to experience the places I visit.

I will definitely be checking out New Zealand, Central/South America, and South East Asia. I have a Meditteranean Sea travel itenerary that I would love to do as well. So many choices! Mostly, I just need to get the meds sorted out so I can stop worrying about it.

Thanks for your help!

[mmpetunia]

Hi Throwaway,

Thanks for your response, I read somewhere else that the dimethyl fumarate that can be compounded is not coated the same as Tec and is absorbed by the stomach rather than the intestine, which makes it less potent. I'm not sure if that's all marketing hype or not.

I also read in a psoriasis forum that dimethyl fumarate is dimethyl fumarate is dimethyl fumarate.

I have no clue who is right!

[throwaway123]

Another possibility would be to switch to rituximab before your trip, since this only needs to be taken every six months. It may be possible to have the cost of the medication covered by Genentech's assistance program, though that might leave infusion costs uncovered.

[Suebee]

Mmp,
I read your post and identified with you. Some of my best memories are when I got to travel. MS takes so much from us, I understand your desire to travel and not let MS stop you. If I were in your position, I would have a really long discussion with neurologist about your chances to relapse if you can't take medication, and what the dr would advise you to do if you experience a flare. Can dr coordinate with oversees medicine to get you steroids? Can he dispense oral steroids to you now to take on your trip? Do you need to fly back for treatment? How does dr suggest transitioning back to treatment? I would weigh all this information against your opportunity to travel. I believe life involves risks, you just need to understand the risk and decide if you are comfortable taking that risk. Then have peace with your decision, whatever it maybe. Best wishes, Suebee

[ActiveMSers]

MMP, you do not need health insurance to get travel insurance, but in general, it is good to keep your health insurance current. As for travel insurance, there is a window, usually two weeks to 30 days after you've made the first payment on your trip (plane ticket, hotel reservation, whatever) that you can get preexisting conditions included. Do not book any of your trip until you research that and plan for insurance.

As for your trip, I would recommend against going "everywhere" as the world is pretty big.

Now, you could do it in sections and return back to the US once or twice for meds, which could work well, but it may not be as budget friendly (as say, with an around-the-world plane ticket).

I've been to all the places you've mentioned, so if you have any specific destination Qs, just holler.

[mmpetunia]

Thank you all so much for your replies, I really appreciate it!

Throwaway, I like to idea of switching to an infusion to keep me covered for 6 months, maybe I can talk to my neuro about changing my meds to something that covers me for one year. I think there is at least one that can do that...

Sue, I appreciate your feedback and the advice about filling a prescription for steroids ahead of time. I think my neuro might be on board with that. I agree about weighing the risks-- I want to minimize them but I have thought about this long and hard and my conclusion is that regardless of what MS takes from me in the future I have the opportunity to do this now. I know for sure that I would regret not going, especially if I became significantly sicker and unable to go at another time. I accept the risks involved and know that this is what I want to do more than anything.

Dave, I agree the world is huge! I can't go everywhere, though I wish I could I have thought about returning to the US a few times for the meds and healthcare but since I probably can't maintain the insurance, I'm not sure it will work. Maybe I can work something out with an infusion like throwaway suggested but my understanding is that those are pretty pricey. Thank you for the offer for information on the places I would like to travel. As I get things planned I will be sure to reach out if needed.

Thanks again for all of the great ideas. I so appreciate all of your ideas!

[mctripat]

travel and MS

I think you need to talk to your neurologist first. I would talk about MS medications you currently take and what to do in a foreign country. Your doctor may be able to refer you to someone who can help you..

You also could contact any of the national MS groups. There may be some drug rep or drug educator or social worker or travel agent who can help you.

Also you do need travel insurance. You need to be able to see a doctor in case of an emergency.

Also there are places that have tours for disabled persons. I don't know where you find out about them... I would probably go to AAA and talk to one of their travel agents.

Also AAA could help you get info about renting a car in a foreign country.

I am not suggesting you go on a tour for disabled persons, but get info that may help you from one of them. Surely there are people who go on them who end up getting sick and needing medical treatment. I would specifically try to find out info about obtaining any of the MS medications while abroad..

Since most of those places have national health care everything is very different.. and drug prices and availability are set by the government. I am sure some of the MS drugs are more difficult to get while in a foreign country.. but most of the companies selling the drugs in the US, seem to have some business arrangement with a European Company. What I mean is these companies have subsidiary arrangements etc..

There are many places in Europe where Americans and Canadians retire to... I have read things about their health care being cheaper than in the US.. Medicare would not pay anything outside the US, with a few exceptions.(Puerto Rico)

Also if you have heat sensitivity you need to figure out how to handle that... I know air conditioning is not common all over Europe. Even if all the buildings and places you stay in have AC you may be outside for extended periods of time.

mctripat

[celia]

Even though it's not a state, Puerto Rico is part of the U.S. (Hence, medical insurance being ok there.)

[garyp]

Where to buy travel insurance for pre-existing conditions

mmpetunia:

I have lived with MS for 20 years, and have done much overseas travel during that time for up to a month at a time.

Always traveled with travel health insurance. As Dave has mentioned, buy it within a certain amount of time after purchasing your airline ticket it can cover pre-existing conditions. My primary motivation though in buying such insurance was in case of need to cancel the travel prior to departure due to a relapse - to at least cover my family on the cost of the trip in case we could not go due to my health.

When going to more remote parts of the world, I did travel with oral steroids as a precaution in case of a relapse. If was going to a more developed part of the world such as Europe, then my neuro preferred not to write such a script - and instead if I needed such an intervention refer me to local neuro in the city I was in with the caution that the in-country doctor would have to agree to such a treatment plan. With email these days such things are much easier to request. The only thing to consider is how long something like oral steroids remain effective - most drugs are certified to be effective for only a certain period of time after purchase. I am not sure what the window is for oral steroids. Thankfully, I never needed such an intervention overseas, so cannot comment on how my planned arrangements actually worked out.

You will need to make sure though that you read the fine print on such travel insurance benefits. Often they cover medical situations such as:

"resulting from a sudden, unexpected recurrence of a Pre-existing Condition while traveling."

It will then often qualify that with an additional condition such as:

"This benefit does not include coverage for known, scheduled, required, or expected medical care, drugs or treatments existent or necessary prior to the Effective Date of coverage."

So, with the above conditions, a relapse requiring an intervention such as steroids would be covered....but a maintenance drug such as Tecfidera would not.

A good place to shop for such a policy is:

https://www.squaremouth.com/

..it is possible that you can find a policy which does not have the above conditions. It all depends what is being offered in the marketplace at the time of purchase.

For each option squarefour will provide the price and the policy details so you can see exactly what is covered. Most of the policies here though are for one country at a time...so you would need to buy a policy for each country that you are visiting.

Cost for such insurance for an entire year - likely to run into thousands of $.

If you are able to locate a policy which will cover maintenance drugs for pre-existing conditionss one factor to consider is - is the drug you end up choosing even available through the pharmacy benefit of your selected policy. You would need to study what is called the formulary of your selected policy to determine what drugs are covered. Health insurance issuers have the discretion in most cases to decide which drugs are covered in their formulary - and even if they cover say Tecfidera at 60k + per year, they then even have the discretion (even under health insurance exchanges) to put such drugs under a high tier of co-insurance i.e. it is not covered under the $20 per month co-pay but possibly an arrangement where you need to pay 40 to 60 % of the cost up to the out of pocket maximum.

Another option would be to obtain a standard policy here in the US - and that policy has a condition which provides for using it overseas. Then have the medication such as Tecfidera shipped to say a relative here in the US...and they then attempt to ship it to you wherever you are overseas. As a word of caution on this though - my family and i were unexpectedly overseas for a few months (in the UK). I was running out of my current maintenance drug (at the time, Rebif) - so had the mail order of Tecfidera sent to a friend here in the US who then tried to forward it to me. All without success - just too many hoops to jump though for mailing a self injection type drug. Even had my neuro try as well - with the same problem.

I would suggest caution on assuming that you can switch to the drug which you take every 6 months. I believe the drug being suggested is Lemtrada. The protocol is an initial set of infusions on 5 consecutive days...then a year later another set of infusions over 3 consecutive days. Sounds ideal for your scenario. Lemtrada I believe though remains recommended only for patients who failed on at least 2 other drugs and at risk of further progression. And it has some pretty serious side effects which need to be monitored. If you are doing reasonably well, your neuro may be unwilling to let you try this drug given the risk/reward trade off and the fact that it may be difficult to mange any side effect if you are say in a remote part of Africa.

Apologies for the length of this email. Wanted to give you my input based on my travel experience. I applaud you for your desire to do what you are planning. Seeing the sites of the world in person is just such a cool thing to do. PM me if I can be of any further assistance as you work through figuring out how to do this endeavor.