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  #1  
Old Wed Feb 12, 2014, 04:32 PM
Honey Honey is offline
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Location: Perth Western Australia
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No sibling match

I was informed today, that both my siblings are not a match. I am quite devastated as are my siblings even though we knew what the odds were. I signed the paperwork today to start a worldwide search at the haemo's office.

It has now raised some questions.

Does anyone know the costs (to me) of a transplant if you find a donor overseas ? I couldn't find anything on the web regarding Australian transplant costs.

How long is the process to find a match? I think I read on here somewhere that the Australian donor search is not that quick.

I am sure I will have more later, just can't think right now.

Thanks

Honey
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  #2  
Old Wed Feb 12, 2014, 06:18 PM
Whizbang Whizbang is offline
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Honey,

I believe that your insurance will cover the cost of a non-sibling donor...

Other than your normal out of pocket costs, it shouldn't cost extra...

Sorry to here about your siblings...

Best of luck on your search for a match...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Wed Feb 12, 2014, 06:31 PM
sbk007 sbk007 is offline
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Honey, Australia is a one payer country so I thought they pay for everything?
The U.S. is much more complicated. We have lots of Ins Companies and lot of different insurance Policies sold by those different ins companies. Each one pays different rates to different doctors at different hospitals. Most insurances will pay a percentage of if not all for the transplant but many will NOT let you choose where you can have it. Some will pay for everything but the donor HLA matching tests. The searches are free, but the actual tests to identify the perfect donor may or may not be. Again this is the U.S. we are not yet a 1 payer system.
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  #4  
Old Wed Feb 12, 2014, 08:34 PM
Chirley Chirley is offline
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Honey, it depends on whether you're going public or private. When I had my tests done for the international search I received a bill for a few hundred dollars from memory. I don't think I could claim anything back from Medicare or my PHI. The test was performed at a public hospital lab but because I was a private patient at another facility, I got charged. I remember thinking it was unfair at the time. I don't know if there would have been any costs if they had found a donor. I'm pretty sure full allogeneic transplants are only done in public hospitals so I assume the costs would be absorbed by the Federal Government.

After 6 months it was decided that I didn't need a transplant but they hadn't found a match in that time. The international search wasn't started until many months after I had been started on the Australian search and no match found.

On the other hand Jewels aka Julianne/Jules (from Victoria) was tested and a donor(s) found within weeks. I think it's luck of the draw how fast they find a compatible donor for you. Kind of like....how long is a piece of string? I do remember my haematologist saying that he was going to talk to the transplant co ordinator about increasing the urgency of my search when my blasts started increasing, so there must be some kind of priority system as well.

Sorry this is rambling all over the place.....I'm feeling a bit vague today.
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  #5  
Old Wed Feb 12, 2014, 11:38 PM
SLB SLB is offline
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Hi honey,

I had my transplant at the royal in Brisbane (public hospital but as a private patient) and all costs were covered. I can't remember receiving any bills for my donor search and to date most of my bills have come from radiology when I was having my induction chemo in private hospitals and now my large drug habit all my inpatient medications were covered! Oh yeah, and the expense of parking at the hospital for family & while going to my outpatient appointments!!

Thinking back my search did take a couple of months and only ended up finding an 8/10 match. (I had 3 siblings that didn't match... So I know how you feel!). I believe my donor came from Germany. Good luck and feel free to pm me if you have more questions.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #6  
Old Thu Feb 13, 2014, 02:37 AM
MDSPerth MDSPerth is offline
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Honey, all Pauls expenses were paid we never saw one bill. Even though we had private health insurance it was recommended by his consultant that he go in as a public patient. The reason behind this we were told is that if he had gone in as private patient all his pathology bills would have to have been processed by us. Something to do with Medicare and the fact that the card holder had to sign off on all the bills.

His treatment as a public patient was no different to that of a private patient as all rooms in the Bone Marrow Transplant Unit at Royal Perth Hospital are single rooms anyway. When he checked out at day 16 he was given enough medication to take him through to day 100 at no cost.

We were told the difference between public and private would have been that he would have received a newspaper each day (which he was not up to reading the majority of the time), I would have received free parking each day and a $10 voucher for the cafe. I received a carers meal at the hospital whenever I was there at meal times anyway.

They did a sibling test for Paul with his sister and brother in England with neither a match. They then went to the world wide register and I was told after Paul passed away that his donor cells had come from a young man in Spain. It did seem to take some time to find a donor and we were beginning to loose hope, but from receiving advice that a donor had been found to Paul being admitted to hospital, it was 19 days.

My understanding is the costs for a transplant are beyond belief especially when things start to go wrong as was the case with Paul. We were also told that a courier goes to the country the cells come from to collect them and that they are carried on their knee back to Australia. Once collected the cells never leave the hands of the courier until they are delivered to the hospital.

Are you still in Perth.

Regards Sandi
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.

Last edited by MDSPerth : Thu Feb 13, 2014 at 03:02 AM.
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  #7  
Old Thu Feb 13, 2014, 06:52 AM
Cheryl C Cheryl C is offline
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When I was going for transplant, even though I'm in a medical fund, my bills would all have been covered since it was a public hospital (Royal North Shore). There aren't many hospitals in Australia where they do transplants and they are all in the big cities so are mostly public.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #8  
Old Thu Feb 13, 2014, 09:00 AM
Honey Honey is offline
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Thank you

Thank you all for your responses, I could only find forum posts mainly from the US...OMG those prices are incredible in the US. From your responses how lucky am I to be in Australia. I just don't know how some could manage it. What an extra worry, when there is already enough to deal with.

Whiz: I am so glad you are going so well. I know you can't base one persons experience with what another would experience as there is so many factors. But because you are the same age as me, I feel connected and your sort of my guiding star of hope and that comforts me when I need it. Nice to see your pic too! Don't think I will look as good as you with no hair.

SBK: I think the US medical system sucks! I always think of the movie John Q when US forum members mention insurance etc. I read somewhere that some purchase their own medical supplies before surgery to cut costs. Is that true?

Chirley: I read yesterday that there is a fund in Australia that pays for any out of pocket costs not covered by medicare for searches. I don't know when it was established, perhaps after your search.

SLB: I am an organiser, and like to have all my duckies in a row, to reduce any unnecessary stress when the time comes. I think that I wanted the comfort of knowing I have some control and that would have come with a sibling match. I know where they live if they decided to back out lol (not that they would), you can see how things are progressing, than being left in the dark waiting for information etc and of course highly motivated to ensure your donor needs are met promptly . With the mystery donor, you have no idea who, where, what etc. That sort of scares me now. Thank you for your offer also, I am sure I will be in touch, feel free to PM me too even just to say hi.

Sandi: I was so delighted to see your name pop up. I have wondered how you have been often, only yesterday did I think of you when I was at the hospital and saw your consultant Julian walking around. I sent a message/email to you quite some time ago but didn't receive a reply back and thought you needed some time to yourself and family. I carried a lantern for Paul at the Leukaemia Walk for you, and have kept it in case you would like it. Please PM and let me know how you are going whenever you like. You mentioned the donor courier as well, I found this yesterday when searching this subject, http://boards.straightdope.com/sdmb/...d.php?t=183809
I thought it was quite interesting Q&A with a donor courier.

Cheryl: Why did you not have a transplant?

Honey
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  #9  
Old Thu Feb 13, 2014, 11:59 AM
sbk007 sbk007 is offline
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Honey, Yes. In fact that movie is par for the course..Some people either have no insurance or crappy policies that don't cover everything, and so sadly to save money we often buy stuff over the counter as opposed to going to a medical supply store. Some people just do without their meds and others go bankrupt. In the US Health issues are the number 1 reason for bankruptcies. Because of the myriad of "FOR PROFIT" individual insurance companies, their different policies, costs are astronomical. Also, some policies won't pay a dime for stem cell transplant. Insurance companies like to sell to bigger companies with lots of employees those are usually good policies that will pay for most everything, in fact the U.S. Government employees policy will pay for most anything you can think of including gender transformations . I'm not kidding..
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  #10  
Old Thu Feb 13, 2014, 01:50 PM
bailie bailie is offline
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I think the U.S. medical system is fine. I was sitting in the room getting my Vidaza shots and next to me was sitting a man who had moved from Canada to the U.S. He said without a doubt he would have died in Canada before receiving treatment. He was very familiar with the Canadian health system and still has a daughter (a doctor) working in their system.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #11  
Old Thu Feb 13, 2014, 07:55 PM
Chirley Chirley is offline
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I used to think Australia's Medicare/Health system was one of the best in the world....I've had my eyes opened....it's not very good at all.

The majority of the population believe the Governments propaganda about how great we have it. Yes, it's good compared to Cambodia, Ethiopia etc but for a first world country....not so good.

There are numerous stories all the time of people having to go overseas for treatment and the fundraising efforts to help them. Sometimes it's because the treatment isn't available here but a lot of the time it's because it's going to take so long to get treatment that they'll be permanently affected or dead. Sometimes they've just been refused treatment because of circumstances.

What about that poor 40 yo man with a perfectly treatable brain/Neuro condition on the Sunshine Coast....he can live a perfectly normal long life with a certain medication but it's not on the PBS and it's $50,000 a year. So his family (wife and two young children) have sold their house, furniture etc to fund the drug, it will only give him a couple of years grace....the Government has refused to help. You hear these stories all the time. Then there is my Mum, the public hospital refused to treat her and were going to let her die...they said she had no hope of living a quality life...that was a year and a half ago. If she didn't have PHI she would have died a horrible death, drowning in her own secretions. Back when I had Vidaza it wasn't even being offered in the public hospital system (yes, I had to pay $50,000 out of pocket). How many people died in the public hospital system because they weren't given treatment? All because the PBS waited three years to put Vidaza on its list AFTER it was approved by the TGA and the PBAC. The reason they did this? Because the drug company was paying for compassionate use after six months and the Government was happy to defer the costs to the company instead of taking them on themselves. The company was being blackmailed into paying compassionate use so as to get approval from the PBS....vicious cycle. Finally Celgene had enough and threatened to stop the compassionate use program and that's when it went on the PBS.

So many things the public is left in the dark about....conspiracy theorist...yes, I am. I've been in Witness Protection (it's called something else now), I've been a Registered Whistle Blower, I've seen the dark side of Government Departments, I've seen the cover ups, the corruption, the dishonesty, the threats, the criminality.....

I know I sound paranoid...believe me....I've only seen the tip of the iceberg.
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  #12  
Old Thu Feb 13, 2014, 09:27 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by bailie View Post
I think the U.S. medical system is fine. I was sitting in the room getting my Vidaza shots and next to me was sitting a man who had moved from Canada to the U.S. He said without a doubt he would have died in Canada before receiving treatment. He was very familiar with the Canadian health system and still has a daughter (a doctor) working in their system.
Medicare, or some commercial insurance policies will pay for most everything. I can see why you think its fine. Ask anyone that has to buy an individual policy how great it is and you'll get a very different answer.
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