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that time again in australia
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that time again in australia

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  • Post
    • February 7, 2013 at 8:29 pm
    bron
    Participant

       Hi again from Australia. Our government is asking again for information to help them decide on drug costs reimbursment to patients. And again i would like anyone who has any knowledge of the drug and treatment to click on the link and add their thoughts. the link is only open until 13.02.13.

      No changes here for my daughter… still cannot get any doctor or specialist to see her…We get the same response everywhere…(she has a specialist so we cannot see her. The problem is she does not have any private insurance so is at the bottom of the list).

       Hi again from Australia. Our government is asking again for information to help them decide on drug costs reimbursment to patients. And again i would like anyone who has any knowledge of the drug and treatment to click on the link and add their thoughts. the link is only open until 13.02.13.

      No changes here for my daughter… still cannot get any doctor or specialist to see her…We get the same response everywhere…(she has a specialist so we cannot see her. The problem is she does not have any private insurance so is at the bottom of the list).

      Her specialist (allocated by the hospital) is a surgeon and while he is excellent at his job , his attitude is , "if you find a tumor , i will cut it out"". I am still searching for a specialist that will help her monitor her body , the surgeon does not do this. Her local GP is doing a very good job of monioring her general health at the moment and we are relying on this at the moment…the search goes on…

       PS, she can book into a dermatoligist however in Australia the waiting list is over 1 and half years… She is on lists..

      again…if you get melanoma…dont get it in austalia….. 

      very kind regards from Bron  (Australia).

       

       

       

      PBAC Invites Consumer Comment on Zelboraf Reimbursement

      Zelboraf (vemurafenib) (commonly known amongst melanoma patients as BRAF therapy) was first considered by the Pharmaceutical Benefits Advisory Committee (PBAC) in July 2012, where a decision on recommending the medicine for PBS listing was deferred to allow the PBAC to obtain further information. The PBAC will again consider Zelboraf in March 2013.

      The PBAC welcomes members of the general public to make comment on the application for a specific medicine being considered for PBS listing. The PBAC accepts these submissions, called Consumer Comments, from patients, carers, members of the public, healthcare professionals or members of consumer interest groups.

      Consumer Comments in relation to Zelboraf, or any other medicine being considered by the PBAC in March 2013, close on 13 February 2013. Information on making a Consumer Comment is available at: http://tinyurl.com/b48nexn

      If you would like to make a comment the PBAC provides some questions to guide your comments (please see below). You do not have to answer all the questions. Information should be included that would help the PBAC understand how this health problem or disease affects Australians, and their families and carers.

      1. What treatment (if any) are you using now?

      Please describe what medicines you take to treat your health problem and how well this treatment works.

      2. What do you see as the benefits of this new medicine for you?

      Please describe the benefits you think the new medicine could have for your health? Do you think the new medicine could have any disadvantages?

      3. How will your life and that of your family and carers be improved by this new medicine?

      Please describe how you think this medicine will affect your life and the lives of your family or carers. Please explain why you think this.

      4. What other benefits can you see from having this medicine on the PBS?

      Please describe any other benefits you think will come from having this medicine listed on the PBS (for example: fewer hospital visits, reduced time off work and so on).

      5. Do you have any comments on the consumer input process?

      Please provide comments or suggestions on how this process could be improved (are the questions appropriate?, what worked well?, what needs improvement?).

      Consumer Comments can be submitted in the following ways:

      Online: http://tinyurl.com/a569arg

      Email: commentsPBAC@health.gov.au

      Mail: PBAC Secretariat

      MDP 952, Department of Health and Ageing

      GPO Box 9848

      Canberra, ACT, 2601

      Fax: 02-6289 4175

       

    Viewing 5 reply threads
    • Replies
        • February 7, 2013 at 8:36 pm
        bron
        Participant

          pps  . sorry about the double post… and the terrible spelling. i wrote this at 4am. half asleep. forgive any errors…thank you.

          • February 7, 2013 at 8:36 pm
          bron
          Participant

            pps  . sorry about the double post… and the terrible spelling. i wrote this at 4am. half asleep. forgive any errors…thank you.

            • February 7, 2013 at 8:36 pm
            bron
            Participant

              pps  . sorry about the double post… and the terrible spelling. i wrote this at 4am. half asleep. forgive any errors…thank you.

              • February 8, 2013 at 9:11 am
              Gordon747
              Participant
                Hi Bron

                We are in NZ so can’t do your survey but my husband has recently completed 4 infusions of yervoy. It is not funded here either and we had to pay for it. The cost for each treatment was $63,000 plus $3,500 for it to be administered privately. The cost is based on weight. The onc first quoted $37000 per dose but that is based on a person weighing 75kg. My husband weighed 107kg. Is this the same as Aussie? or is it a standard cost. Would appreciate your comments as we may have to do another round. Funny thing is you can buy it at Walmart in the US!

                Barbara

                • February 8, 2013 at 9:11 am
                Gordon747
                Participant
                  Hi Bron

                  We are in NZ so can’t do your survey but my husband has recently completed 4 infusions of yervoy. It is not funded here either and we had to pay for it. The cost for each treatment was $63,000 plus $3,500 for it to be administered privately. The cost is based on weight. The onc first quoted $37000 per dose but that is based on a person weighing 75kg. My husband weighed 107kg. Is this the same as Aussie? or is it a standard cost. Would appreciate your comments as we may have to do another round. Funny thing is you can buy it at Walmart in the US!

                  Barbara

                  • February 8, 2013 at 9:11 am
                  Gordon747
                  Participant
                    Hi Bron

                    We are in NZ so can’t do your survey but my husband has recently completed 4 infusions of yervoy. It is not funded here either and we had to pay for it. The cost for each treatment was $63,000 plus $3,500 for it to be administered privately. The cost is based on weight. The onc first quoted $37000 per dose but that is based on a person weighing 75kg. My husband weighed 107kg. Is this the same as Aussie? or is it a standard cost. Would appreciate your comments as we may have to do another round. Funny thing is you can buy it at Walmart in the US!

                    Barbara

                      • February 8, 2013 at 2:32 pm
                      Gene_S
                      Participant

                        Hello,

                        I live in the US and my husband is taking Yervoy for over 2 years now.  You cannot buy it in Walmart here.  It is a prescription drug administered by IV and is administered in a clinical setting such as a hospital or cancer clinic.  Here in the US the drug is $30,000 an infusion.  Fortunately my husband is in a clinical trial so he does not have to pay.

                        Judy (loving wife of Gene Stage IV now NED)

                        • February 8, 2013 at 2:32 pm
                        Gene_S
                        Participant

                          Hello,

                          I live in the US and my husband is taking Yervoy for over 2 years now.  You cannot buy it in Walmart here.  It is a prescription drug administered by IV and is administered in a clinical setting such as a hospital or cancer clinic.  Here in the US the drug is $30,000 an infusion.  Fortunately my husband is in a clinical trial so he does not have to pay.

                          Judy (loving wife of Gene Stage IV now NED)

                          • February 8, 2013 at 2:32 pm
                          Gene_S
                          Participant

                            Hello,

                            I live in the US and my husband is taking Yervoy for over 2 years now.  You cannot buy it in Walmart here.  It is a prescription drug administered by IV and is administered in a clinical setting such as a hospital or cancer clinic.  Here in the US the drug is $30,000 an infusion.  Fortunately my husband is in a clinical trial so he does not have to pay.

                            Judy (loving wife of Gene Stage IV now NED)

                            • February 8, 2013 at 7:08 pm
                            Gordon747
                            Participant
                              Hi

                              If you go to http://www.goodrx.com/ yervoy you will see a list of well known US companies including Walmart are advertising it from $6588 for a 50ml dose and also state there could be manufacturers financial assistance available for eligible persons. Do you think this is a hoax?

                              Barbara

                              • February 8, 2013 at 7:08 pm
                              Gordon747
                              Participant
                                Hi

                                If you go to http://www.goodrx.com/ yervoy you will see a list of well known US companies including Walmart are advertising it from $6588 for a 50ml dose and also state there could be manufacturers financial assistance available for eligible persons. Do you think this is a hoax?

                                Barbara

                                • February 8, 2013 at 7:08 pm
                                Gordon747
                                Participant
                                  Hi

                                  If you go to http://www.goodrx.com/ yervoy you will see a list of well known US companies including Walmart are advertising it from $6588 for a 50ml dose and also state there could be manufacturers financial assistance available for eligible persons. Do you think this is a hoax?

                                  Barbara

                                  • February 8, 2013 at 7:37 pm
                                  POW
                                  Participant

                                    Yes, I think this is a hoax. If Walmart actually sold Yervoy to consumers, so would every other pharmacy in the country. And, of course, what doctor would prescribe for home use a toxic drug that requires carefully monitored iv infusion? Nonsense.

                                    • February 8, 2013 at 7:37 pm
                                    POW
                                    Participant

                                      Yes, I think this is a hoax. If Walmart actually sold Yervoy to consumers, so would every other pharmacy in the country. And, of course, what doctor would prescribe for home use a toxic drug that requires carefully monitored iv infusion? Nonsense.

                                      • February 8, 2013 at 7:37 pm
                                      POW
                                      Participant

                                        Yes, I think this is a hoax. If Walmart actually sold Yervoy to consumers, so would every other pharmacy in the country. And, of course, what doctor would prescribe for home use a toxic drug that requires carefully monitored iv infusion? Nonsense.

                                        • February 9, 2013 at 2:56 am
                                        Gene_S
                                        Participant

                                          Like you said this drug is administered according to  the weight of the person getting it and them so many kg/mg are administered.  It is also administered by IV (intervenous) so the average person could not administer it to themselves.  You would need a prescription by an oncologist.  It is also very closely monitered and you are to have your blood pressure checked every 1/2 hour and stay for an hour after it is completed and you are still monitered.

                                          This is very much a hoax and I can vouch that a walmart would not be selling it because if it was then every drug store in the US would be selling it and no one would be monitered.

                                          Judy

                                          • February 9, 2013 at 2:56 am
                                          Gene_S
                                          Participant

                                            Like you said this drug is administered according to  the weight of the person getting it and them so many kg/mg are administered.  It is also administered by IV (intervenous) so the average person could not administer it to themselves.  You would need a prescription by an oncologist.  It is also very closely monitered and you are to have your blood pressure checked every 1/2 hour and stay for an hour after it is completed and you are still monitered.

                                            This is very much a hoax and I can vouch that a walmart would not be selling it because if it was then every drug store in the US would be selling it and no one would be monitered.

                                            Judy

                                            • February 9, 2013 at 2:56 am
                                            Gene_S
                                            Participant

                                              Like you said this drug is administered according to  the weight of the person getting it and them so many kg/mg are administered.  It is also administered by IV (intervenous) so the average person could not administer it to themselves.  You would need a prescription by an oncologist.  It is also very closely monitered and you are to have your blood pressure checked every 1/2 hour and stay for an hour after it is completed and you are still monitered.

                                              This is very much a hoax and I can vouch that a walmart would not be selling it because if it was then every drug store in the US would be selling it and no one would be monitered.

                                              Judy

                                              • February 9, 2013 at 7:07 pm
                                              Gordon747
                                              Participant
                                                Thanks for your thoughts. I have emailed BMS directly to ask them. My husband has has 4 infusions and his follow up 6 week scan is Monday. The drug and administration cost for us in NZ was close to $300,000 so and I am trying to find a less expensive source in case we need to do another round.

                                                Barbara

                                                • February 9, 2013 at 7:07 pm
                                                Gordon747
                                                Participant
                                                  Thanks for your thoughts. I have emailed BMS directly to ask them. My husband has has 4 infusions and his follow up 6 week scan is Monday. The drug and administration cost for us in NZ was close to $300,000 so and I am trying to find a less expensive source in case we need to do another round.

                                                  Barbara

                                                  • February 9, 2013 at 7:07 pm
                                                  Gordon747
                                                  Participant
                                                    Thanks for your thoughts. I have emailed BMS directly to ask them. My husband has has 4 infusions and his follow up 6 week scan is Monday. The drug and administration cost for us in NZ was close to $300,000 so and I am trying to find a less expensive source in case we need to do another round.

                                                    Barbara

                                                    • February 9, 2013 at 7:13 pm
                                                    lou2
                                                    Participant

                                                      Wow, how many people can afford this?  And even if they have insurance, the copays would be awful.  Yikes.  Had no idea it was so expensive.

                                                      • February 9, 2013 at 7:13 pm
                                                      lou2
                                                      Participant

                                                        Wow, how many people can afford this?  And even if they have insurance, the copays would be awful.  Yikes.  Had no idea it was so expensive.

                                                        • February 9, 2013 at 7:13 pm
                                                        lou2
                                                        Participant

                                                          Wow, how many people can afford this?  And even if they have insurance, the copays would be awful.  Yikes.  Had no idea it was so expensive.

                                                          • February 9, 2013 at 7:28 pm
                                                          lou2
                                                          Participant

                                                            I looked this up online to check the price of yervoy, and found a patient help program.  Have no idea if it will apply to your situation in NZ.  But maybe take a look:

                                                            http://www.fiercepharma.com/story/120k-price-tag-yervoy-hailed-potential-blockbuster/2011-03-28

                                                            http://www.yervoy.com/patient/paying-for-yervoy.aspx

                                                            • February 9, 2013 at 7:28 pm
                                                            lou2
                                                            Participant

                                                              I looked this up online to check the price of yervoy, and found a patient help program.  Have no idea if it will apply to your situation in NZ.  But maybe take a look:

                                                              http://www.fiercepharma.com/story/120k-price-tag-yervoy-hailed-potential-blockbuster/2011-03-28

                                                              http://www.yervoy.com/patient/paying-for-yervoy.aspx

                                                              • February 9, 2013 at 7:28 pm
                                                              lou2
                                                              Participant

                                                                I looked this up online to check the price of yervoy, and found a patient help program.  Have no idea if it will apply to your situation in NZ.  But maybe take a look:

                                                                http://www.fiercepharma.com/story/120k-price-tag-yervoy-hailed-potential-blockbuster/2011-03-28

                                                                http://www.yervoy.com/patient/paying-for-yervoy.aspx

                                                                • February 9, 2013 at 7:30 pm
                                                                lou2
                                                                Participant

                                                                  Oops, looks like it applies to U.S. residents.  However, I don't see why a patient help program for an internationally sold drug would only apply to one country.  If faced with that kind of cost, and living elsewhere, I would still contact the maker and ask.

                                                                  • February 9, 2013 at 7:30 pm
                                                                  lou2
                                                                  Participant

                                                                    Oops, looks like it applies to U.S. residents.  However, I don't see why a patient help program for an internationally sold drug would only apply to one country.  If faced with that kind of cost, and living elsewhere, I would still contact the maker and ask.

                                                                    • February 9, 2013 at 7:30 pm
                                                                    lou2
                                                                    Participant

                                                                      Oops, looks like it applies to U.S. residents.  However, I don't see why a patient help program for an internationally sold drug would only apply to one country.  If faced with that kind of cost, and living elsewhere, I would still contact the maker and ask.

                                                                      • February 9, 2013 at 7:14 pm
                                                                      POW
                                                                      Participant

                                                                        Good for you, Barbara! I love the thought, energy, and persistence you put into researching healthcare options. Whether it be the best treatment for your husband or getting Yervoy from Walmart, the mind-set is the same. You go, girl! And, hey, if you find out that Walmart DOES sell Yevoy, I'll send  you a dollar (US!). smiley

                                                                        • February 9, 2013 at 7:14 pm
                                                                        POW
                                                                        Participant

                                                                          Good for you, Barbara! I love the thought, energy, and persistence you put into researching healthcare options. Whether it be the best treatment for your husband or getting Yervoy from Walmart, the mind-set is the same. You go, girl! And, hey, if you find out that Walmart DOES sell Yevoy, I'll send  you a dollar (US!). smiley

                                                                          • February 9, 2013 at 7:14 pm
                                                                          POW
                                                                          Participant

                                                                            Good for you, Barbara! I love the thought, energy, and persistence you put into researching healthcare options. Whether it be the best treatment for your husband or getting Yervoy from Walmart, the mind-set is the same. You go, girl! And, hey, if you find out that Walmart DOES sell Yevoy, I'll send  you a dollar (US!). smiley

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