[Nancy Shamanna]

Re: subcutaneous Velcade

by Nancy Shamanna on Sat Mar 10, 2012 11:20 am

Hi Laetitia.....interesting to read your comments about the Australian health care availability for myeloma patients. Do you take your treatments at a hospital now or at an infusion centre? Maybe you should ask your oncologist about what he/she thinks about the thalomid vs. Revlimid issue. They might be lobbying on their patients' behalf and need you and others to write in to the health administration to gain access to a new drug. Or is Revlimid only approved for 'relapsed' patients and not for 'newly diagnosed' patients? In that case, the issue goes up to another level. would be interested to hear about it, since we in Canada also have universal health care and need our drugs to be approved provincially. I understand that your system is a combo of 'universal' plus 'private insured'. Hope that all the patients get good care.

[laetetia]

Re: subcutaneous Velcade

by laetetia on Fri Mar 16, 2012 12:42 am

Yes. All the treatments are at the public hospital. There are a few public hospitals with specialised cancer divisions and my partner goes to one of those - fortunately close to our home. I'm not sure on the Revlimid issue. I look up information on the pharmaceutical benefits scheme to see what guidelines are for whatever treatment is given but I know that the first line of treatment in all cases is thalidomide and only if that fails or the side effects aren't bearable are other drugs permitted to be applied for. I think they apply to the federal government for approval. We can pay money for private cover or every person has to pay a percentage of their wage - usually 1.5% depending on your salary level for medicare - which is our public health system. The difference is with private cover you pay a lot of money to the medical fund for cover and then you usually get billed a heap of money for everything over the approved charge rate (and most doctors charge a lot more than the charge level set by medicare). So you get to choose your own doctor and you get helped quicker but you end up a lot more out of pocket. If you are not in a private medical fund and go public then you are on a waitlist so for certain procedures that aren't considered life threateningly urgent, you could wait many months or often years to have the operation or get the procedure done that you need. You are given a specialist or doctor appointed by the hospital.

[Nancy Shamanna]

Re: subcutaneous Velcade

by Nancy Shamanna on Fri Mar 16, 2012 8:50 am

Hi Laetetia, Thanks very much for filling us in on the way the Australian health care system is set up. I hope that once you are 'in the system' in the public one you get your appointments and treatments in a timely fashion? in Calgary, our cancer centre is not 'free standing', i.e. a separate hospital, either, but it provides very good care and all of our cancer patients are treated there. It is literally attached by a long hallway to a big hospital! I think that that is a function of population density also. In the US, there are whole institutions just dedicated to multiple myeloma, but there wouldn't be enough patients here for that situation. As usual, fund raising is going on to help to provide a new cancer building, and it is in the works.

We just loved visiting Sydney a few times. My husband has family there and they graciously hosted us. It has just got to be one of the most beautiful cities in the world, and with a climate to match! The first time we went as a family was when my older daughter was playing flute in her high school band and they went on a tour, which included Brisbane, Newcastle and Sydney. Have also visited Canberra, the lovely capitol of AU. Also, there are just hundreds of young Australians working at the ski resorts in Western Canada....it is very usual to hear their distinctive accents in the Banff, Lake Louise and Whistler areas!

On the topic of sub=Q Velcade, you can read it just got approved here! I think it is great when another treatment comes on the scene...that will give the oncologists greater flexibility when devising treatment for patients. I was on the 'regular' Velcade before and the neuropathy issue wasn't too bad, and now I see that sometimes it is just given by IV once a week, instead of twice a week, as when I had it.

Even if your local support group meets in the daytime and it is not convenient for you, might they have a website, or other evening functions sometimes? They may be able to fill you in on 'advocacy' issues, regarding the approval of drugs like 'Revlimid'. There is a power in blocks of voters putting pressure on public systems, nest-ce pas?