Libby,
Thanks for clarifying the multiple myeloma treatment restrictions that one has to wrestle with in Australia. That really does put a whole new light on things.
Wishing you all the best as you navigate through this Vicstir.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How long between your first & second transplant?
Hi Libby, Thanks for explaining about some of the regulations concerning myeloma treatments in Australia. i have wondered about that myself, since am interested in advocacy (and loved visiting AU).
At home here, I try to stay aware of the issues regarding availability of treatments, although I often find that I am not 100% accurate in my knowledge. In Canada, in effect we have 11-12 different health jurisdictions, since each province and territory has their own health service. Is that the same in AU? That is, do NSW, ACT, Queensland, and the other states each manage their own health matters including funding for drugs? Or is it a national program for cancer treatment with one set of guidelines?
There is a lot of patient advocacy going on here to help obtain better treatments for myeloma patients. Who would know better than us patients and our doctors as to what might help us, now or in the future?
At home here, I try to stay aware of the issues regarding availability of treatments, although I often find that I am not 100% accurate in my knowledge. In Canada, in effect we have 11-12 different health jurisdictions, since each province and territory has their own health service. Is that the same in AU? That is, do NSW, ACT, Queensland, and the other states each manage their own health matters including funding for drugs? Or is it a national program for cancer treatment with one set of guidelines?
There is a lot of patient advocacy going on here to help obtain better treatments for myeloma patients. Who would know better than us patients and our doctors as to what might help us, now or in the future?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long between your first & second transplant?
Hi Nancy,
In theory (hah) all the Australian states follow the same PBS guidelines. If a doctor (normal GP) is prescribing a drug I am unsure of exactly who pays for it, that is whether it is the state government or the federal government. It appears to be slightly different if the drug (chemo) is prescribed in a hospital (in that there are more options) and therefore will probably change from state to state. Some states appear to have a bigger budget for health and some hospitals have a bigger budget than others in the same state.
Was the above a bit confusing? One of the drugs I am currently on (anti-viral drug) is only available through the Melbourne hospital where I had my allo - I cannot get it from my local hospital on a normal hospital prescription and certainly not from an everyday pharmacy. It would appear to me that the Melbourne hospital has either allocated funds for the drug (non-PBS) or has a PBS authority to prescribe it. It would appear larger hospitals possibly have a greater access to non-PBS drugs.
Some procedures are only available at larger hospitals. I think there are only two hospitals in Melbourne that currently do allo transplants for myeloma patients. I am unsure of the availability of allos in the other states. One of the transplant nurses told me that they are now offering allo transplants to any young myeloma patient and those with high risk disease after the patient has had initial treatment with Velcade. I am unaware if any other conditions need to be met to be part of this treatment.
In theory (hah) all the Australian states follow the same PBS guidelines. If a doctor (normal GP) is prescribing a drug I am unsure of exactly who pays for it, that is whether it is the state government or the federal government. It appears to be slightly different if the drug (chemo) is prescribed in a hospital (in that there are more options) and therefore will probably change from state to state. Some states appear to have a bigger budget for health and some hospitals have a bigger budget than others in the same state.
Was the above a bit confusing? One of the drugs I am currently on (anti-viral drug) is only available through the Melbourne hospital where I had my allo - I cannot get it from my local hospital on a normal hospital prescription and certainly not from an everyday pharmacy. It would appear to me that the Melbourne hospital has either allocated funds for the drug (non-PBS) or has a PBS authority to prescribe it. It would appear larger hospitals possibly have a greater access to non-PBS drugs.
Some procedures are only available at larger hospitals. I think there are only two hospitals in Melbourne that currently do allo transplants for myeloma patients. I am unsure of the availability of allos in the other states. One of the transplant nurses told me that they are now offering allo transplants to any young myeloma patient and those with high risk disease after the patient has had initial treatment with Velcade. I am unaware if any other conditions need to be met to be part of this treatment.
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How long between your first & second transplant?
Thanks Libby, that's interesting!
As far as allogeneic transplants go, I think that in my province they are only offered at one cancer centre (Calgary), in order to just have one centre providing them. The cancer drugs such as Revlimid and Velcade are only had from the cancer centre pharmacy, and are at no cost to the patient. It took me a while to find out about the cancer treatments, which are not in the same category as other medical drugs. Not all of the same drugs are available in all the provinces, it depends on funding for each drug in each province. So you can't make any generalizations across the country that way.
But, at the national level, Health Canada approves new drugs, and then they are also reviewed by the panCanadian Oncology DRUG review, and then a pricing review. There is a 'made in Canada' price applied to them, by negotiations with the drug company. This sometimes works to the disadvantage of provinces without a large budget for cancer drugs.
As far as allogeneic transplants go, I think that in my province they are only offered at one cancer centre (Calgary), in order to just have one centre providing them. The cancer drugs such as Revlimid and Velcade are only had from the cancer centre pharmacy, and are at no cost to the patient. It took me a while to find out about the cancer treatments, which are not in the same category as other medical drugs. Not all of the same drugs are available in all the provinces, it depends on funding for each drug in each province. So you can't make any generalizations across the country that way.
But, at the national level, Health Canada approves new drugs, and then they are also reviewed by the panCanadian Oncology DRUG review, and then a pricing review. There is a 'made in Canada' price applied to them, by negotiations with the drug company. This sometimes works to the disadvantage of provinces without a large budget for cancer drugs.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long between your first & second transplant?
Thanks for your kind thoughts Alex, Libby, Eric, and Multibilly.
To answer some questions, I have not asked my doctor what the logic behind any treatment is. I figure he knows more then me. I do recall reading somewhere as I think Eric may have too, that the second SCT can work even though the first one hasn't. So maybe that is why my doctor has suggested it.
I did ask him about an allo. He told me there is a 20% mortality rate. Which because I'm so healthy
is too great a risk at this point. But not to be ruled out at a later date.
My doctor doesn't work alone in his decision making from what he has told me. They meet once a week to discuss their patients with a team of doctors, one of whom I am told specializes in myeloma. So even though I am a little confused at my last visit, I trust how they will treat me in the future.
I do make myself laugh sometimes, having the word "logic" anywhere associated with this disease is crazy. Nothing about this makes sense or seems to be the same for anyone of us. Our journeys are all so different.
Nonetheless, tomorrow is a new day. I for one intend to enjoy it.
Take it easy
Vic
To answer some questions, I have not asked my doctor what the logic behind any treatment is. I figure he knows more then me. I do recall reading somewhere as I think Eric may have too, that the second SCT can work even though the first one hasn't. So maybe that is why my doctor has suggested it.
I did ask him about an allo. He told me there is a 20% mortality rate. Which because I'm so healthy
is too great a risk at this point. But not to be ruled out at a later date.My doctor doesn't work alone in his decision making from what he has told me. They meet once a week to discuss their patients with a team of doctors, one of whom I am told specializes in myeloma. So even though I am a little confused at my last visit, I trust how they will treat me in the future.
I do make myself laugh sometimes, having the word "logic" anywhere associated with this disease is crazy. Nothing about this makes sense or seems to be the same for anyone of us. Our journeys are all so different.
Nonetheless, tomorrow is a new day. I for one intend to enjoy it.
Take it easy
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How long between your first & second transplant?
Hi Vic, Sorry I jumped into your thread yesterday with my questions to Libby! I am curious as to how the Australian patients handle advocacy work, since, as it is in Canada, one can never know too much about how the health care system works, and what is available.
There is a whole institution in the US, UAMS, that specializes in double auto transplants, but they also do a lot of other treatments along with that, I think.
It just seems to me that since there are newer drugs available elsewhere than are yet available on public health care in either of our countries (Pomalyst, Kyprolis come to mind), it can't hurt to get involved in one's myeloma groups. Then, if there is a need to do letter writing to government, or that sort of thing, one is aware of the issues. In the meanwhile, many patients do go on clinical trials of new drugs. In Canada, the myeloma advocacy groups are known to be effective in pushing for change.
Sorry your first transplant did not work out. I also had an auto transplant, after Velcade induction, and after that a year of low dose Revlimid treatment. Maybe your myeloma doctors will suggest that too. Best wishes to you!
There is a whole institution in the US, UAMS, that specializes in double auto transplants, but they also do a lot of other treatments along with that, I think.
It just seems to me that since there are newer drugs available elsewhere than are yet available on public health care in either of our countries (Pomalyst, Kyprolis come to mind), it can't hurt to get involved in one's myeloma groups. Then, if there is a need to do letter writing to government, or that sort of thing, one is aware of the issues. In the meanwhile, many patients do go on clinical trials of new drugs. In Canada, the myeloma advocacy groups are known to be effective in pushing for change.
Sorry your first transplant did not work out. I also had an auto transplant, after Velcade induction, and after that a year of low dose Revlimid treatment. Maybe your myeloma doctors will suggest that too. Best wishes to you!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long between your first & second transplant?
Hi Nancy,
No need to apologize. I learnt alot from your question and Libby's answers too. The political side of medicine had not occurred to me.
Thanks for your best wishes.
Vic
No need to apologize. I learnt alot from your question and Libby's answers too. The political side of medicine had not occurred to me.
Thanks for your best wishes.
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How long between your first & second transplant?
Is there any evidence that a stem cell transplant works?
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TheBronx - Who do you know with myeloma?: Not much
- When were you/they diagnosed?: 08 August 2013
- Age at diagnosis: 53
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