Any creative minds that can help me find a solution?

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ninismom
ninismom Member Posts: 20
edited June 2014 in HER2+ (Positive) Breast Cancer

I have a bit of a strange situation, and I'm wondering if there are any geniouses out there that can help me figure out a way for me to get my Herceptin closer to where I live.

I'm originally from Canada, but have been living in Haiti off and on for the past fifteen years. Almost four years ago I was diagnosed Stage IV with one small bone met. Because of this I'm on herceptin for life. After my diagnosis I went home to Canada for treatment, but my husband has continued to work in Haiti with various relief agencies since my diagnosis. We tried to settle in Canada again, but he had no luck finding work - a problem he never has in Haiti. We've been apart a lot, and have a four year old daughter that doesn't do too well with being raised by a single parent.

Last year, in an effort to keep our family together, I began traveling back and forth from Haiti to Vancouver every three weeks to keep up with my herceptin treatments. Not only was it exhausting from a physical standpoint, but also financially.

Prior to making the decision to go back and forth, I did a ton of brainstorming to see if I could come up with some other options:

  • I checked in the Dominican  Republic (same island as Haiti), but their charges for herceptin are $3,000 USD per dose - not including Dr fees. A plane ticket to Vancouver is half the cost.
  • I emailed Roche - the distributor of Herceptin and got the contact info for their representative in Haiti. They advised that they would not be willing to import Herceptin into Haiti because of lengthy delays in customs, and the requirement that the drug be refrigerated.
  • I emailed a couple Cancer Centers in South Florida (only a 90 minute flight from Haiti) and explained my situation, and asked if they have any sponsorships or assistance available. I was told no by one, and never received a response from the others.
  • I called Herceptin Access Solutions, and Genetech Access to Care Foundation, and was told by both that because I'm Canadian (not a US citizen) I'm not eligible for their programs
  • I emailed the Oprah Show (before it ended)! No reply.
  • I emailed and called American Airlines and asked if there were any programs that provide assistance to people who are traveling for medical reasons. The answer was no.

Have I missed anything? Are there any obvious, glaring options that I've missed? Or does anyone have any creative suggestions that I could try?

Thanks in advance!

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited May 2012

    http://www.aircareall.org/

    Try the Air Care Alliance.  Their website is a listing of all the organizations that provide free air transport for medical reasons, both here and internationally.  I have not looked at it in detail, but you seem as though you are very capable and persistent and can find your way around!

    Best of luck to you!

    Joan

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  • leggo
    leggo Member Posts: 3,293
    edited May 2012

    This is quite the pickle. If it were me, I'd call up our Minister of Health and ask that she work it out for you. I don't see why, if you're a Canadian citizen, the medication can't be shipped to you and administered there. They ship organs all over the world so a little iv bag of Herceptin should be easy. (She has a lot to make up for, so it's worth a shot). I'd bitch and moan to our government until I saw some action, or at the very least, until it made the news.

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  • ninismom
    ninismom Member Posts: 20
    edited May 2012

    Thanks for all of your ideas and moral support!

    Kayb - I didn't realize that herceptin is a powder...Interesting! One thing I forgot to mention was that the Roche distributor here in Haiti advised that even if they could bring it into the country, the cost would be at least $2500 USD per does....so again, it's cheaper to fly to Vancouver every three weeks.

    I sure wish they would make herceptin in an oral / pill form! It would make all of this so much easier.

    To be honest, I've seriously been considering stopping my herceptin treatments when I hit the 5 year mark. I don't feel ready to make the decision yet, but my quality of life with all of this back and forth, and family disruption is making things very difficult....

    Thanks again to all of you!

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  • J9W
    J9W Member Posts: 395
    edited May 2012

    I have a creative way that may work.  Find the name of the owner or the president of their board of directors and facebook that person!  i just did this for a friend of mine who was an unhappy camper with another company (not Roche), over Memorial Day weekend too, and someone from the company president's office got in touch with her immediately. We were both surprised at the fast reply and by Tuesday, all was well again. Good luck. It seems wrong you have to travel that far. 

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited May 2012

    This is a difficult situation for you. Do you find the trips to Canada to be disruptive to your family and tiring for you? Or do you welcome the chance to see family there every three weeks and the airfare is the big burden? If the latter is the case maybe you need to focus on getting someone to sponsor the airfare.

    I thought the Doctors Without Borders was a good suggestion. You could approach them as a "Patient Without Borders."

    You also mentioned the short flight to Florida but the problem there is that they said you needed to be a citizen. Just wondering if you established residency status there would it help. I'm guessing you visit Florida occasionally as it's so near. Do you have an address there? or could you get an address there?

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited May 2012

    Hi, have you thought of spreading your doses further out than every three weeks.

    I am only 15 months NED, but my plan is, if I make it a few more years,  to start doing a dose once a month and then spread them out even more.  I sometimes now, because of vacations or kid's schedules, go every 4 weeks  already.

    Do you have tumor markers done? have they been reliable for you?  If they are, you could stop and then monitor your numbers and if it starts going up, go for a treatment.  

    Laurie

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  • ninismom
    ninismom Member Posts: 20
    edited May 2012

    JW9 - that IS very creative....I'll have to do some good digging to find a name!

    MaryNY - it's both. On one hand I enjoy being able to see my family in Canada, but then I'm missing out on my 4 year old daughter's life (and my husband's...) too. What I was doing was one week in Canada, two weeks in Haiti....repeat, repeat, repeat. The financial part of it was tough too. We spent over $7,000 in airfare last year, and that was only for a portion of the year (I ended up staying in Canada for a number of months because I was so tired of it all). As for Florida - if there was a way I could get residency, I'd jump at the chance....but unfortunately it's not as easy as just deciding to go, and getting a visa. You have to qualify - either as an investor, or if a family member sponsors you. We do have an address there - my husband's cousin lives in South Florida and we often use their address for things.

    Lauriesh - I talked to my doctor about a number of options - taking a year off (she said I wouldn't be able to get back onto it easily afterwards because of their policies), spreading it out (she again said that it was not protocol). In the end what I've done - and am doing right now - is taking a couple treatments off once a year. I missed my treatment in May and my first one in June so that I could be in Haiti for two months. That has definitely helped - but I know that I would be back at it all again, if I hadn't just received a surgery date (BMX with expanders). I'll have to be in Canada for a couple months to recover, so we'll be separated again for a while.

    Thanks for all of your suggestions!!!

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited June 2012

    I read through all these innovative solutions, and thought - great, lots of really good thoughts. But the easiest adaptation - putting aside doctors without borders, charity flights, special deliveries of herceptin etc etc etc, would be for your other half to move back to Canada. If he's an aid worker, couldn't he find work with CIDA, or perhaps a Canadian NGO? You are the one having to deal with the burden of ill-health. It doesn't seem fair that you have to deal with that plus the logistical challenges of getting your life-saving treatment down to Haiti. I imagine that on a scale of difficult, finding a job in Canada would be easier than you having to rush around trying to find the treatment that you are entitled to.

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  • dormouse72
    dormouse72 Member Posts: 84
    edited June 2012

    Call John's Hopkins or Sloan-Kettering/ Weil Cornell or the cancer Center in Boston whose name I'm forgetting.  It may not be cheaper as compared to airfare but certainly they are closer distance wise and you might be able to do a long weekend rather than a week away from your family.  All three of these work with international patients (I go to Sloan and they have an incredible array of services) but they are definitely not cheap.

    Jamaica, Bermuda, or the Bahamas might have a cancer Center able to do the transfusion.  Again, you might be paying the same or more for treatment in return for a shorter turn-around.  Is there some sort of insurance portability among Commonwealth countries?  I suppose that would be too easy but you never know unless you ask.

    As you are Canadian, what about Cuba? Hugo Chavez went there from Venezuela for his cancer treatments and I could never figure out why.  Of course, they may have great facilities which we in the US know nothing about because of the embargo.  I have always wanted to go to Cuba.  It's supposed to be beautiful. 

    Health care in Haiti is still rudimentary at best from what I understand - it's really impressive that your commitment to your family and the country are so strong that you are jumping through these hoops for your own treatment.  I am still so new to all of this that it gives me a lot of hope to see someone living their lives so fully. 

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