from bron in australia…maybe i am crazy

i have been thinking about this survey  as i have yet to do it……. maybe i am crazy but the article states   ..

The current cost of ipilimumab or yervoy in Australia is $120,000.

i have been thinking about this survey  as i have yet to do it……. maybe i am crazy but the article states   ..

The current cost of ipilimumab or yervoy in Australia is $120,000.

To put that in perspective the average suburban house in Brisbane costs 330,000 to 400,000.( It take two wages and 30 years to pay off.)

Ruling out that only wealthy people in Australia get melanoma then the average person would have had no access to this drug.

 I read this as ………  Very few people in Australia can answer this questionnaire .my da 

Would it be rude of me to ask any people on this website that have used this drug to click on the link and make their comments as to any

positive results from use of the drug ipilimumab (or yervoy). The actual form that you see when you click on the link is very basic.

It may help many , many people in Australia……

Thank you and hoping some may help….

very kind regards from bron

Medicine Information.
Dear MPA Member
We need your voice to ensure patients with advanced melanoma have access to affordable treatments. Please provide a comment on new PBAC submissions.

What is the Pharmaceutical Benefits Scheme (PBS)?
The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of certain medicines, therefore ensuring they remain affordable.

Who decides which medicines are listed on the PBS?
The Australian Government is responsible for deciding which medicines are on the PBS, however their decision is mostly based on advice from the Pharmaceutical Benefits Advisory Committee (PBAC).

The PBAC is an independent body of experts that reviews and make recommendations to Government about newly submitted medicines.

The PBAC meets 3 times a year and its next meeting is in November 2012.

Why is this important for melanoma patients?

Although melanoma is easy to cure in its early stages, there is yet to be a drug developed that will successfully treat melanoma in its advanced stages.

In these cases, only a handful of drugs are available, and they have limited application and suitability for each individual patient.

The first new drug up for PBS recommendation is Ipilimumab or “Yervoy”. This drug contains the active substance ipilimumab, a protein which helps your immune system to attack and destroy cancer cells..

The PBAC has considered Ipilimumab twice before, and on both occasions the PBAC requested more information.

If not subsidized under the PBS, the cost for an Australian patient with advanced melanoma seeking treatment with Yervoy is approximately $120,000. Most patients will not be able to afford this in the final stages of their battle with melanoma.

How can you help?

Before the PBAC makes recommendations, it has a two week period where it considers comments from the public. This period starts from the 26 September until 10 October.

We encourage all melanoma patients, carers, family members, healthcare professionals and advocacy groups to write to the PBAC and provide the panel members with personal stories on current treatment options, and the personal impact of melanoma on life.

What kind of comments would be helpful for the PBAC?
The PBAC asks you to consider 5 questions, however you don’t have to answer all of the questions.

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

Guiding questions for patients:
– please describe past and current treatment(s) you have accessed?

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

Guiding questions for patients:
– Have you accessed Ipilimumab? What benefits did you experience?
– If you have not accessed Ipilimumab before, explain why access to Ipilimumab could be beneficial to you?

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

Guiding questions for patients:
– Describe how your life and that of your family and carers be improved by this new medicine?

Guiding questions for family and friends:
– Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
– Describe how the life of the patient and that of other family members and/or carer can be improved by this new medicine?

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

Guiding questions for patients:
– Without subsidy, could you currently afford it?
– If not, what other options do you have to purchase Ipilimumab?

Guiding questions for family and friends
– Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
– Why would you like to see the patient have access to Ipilimumab?
– Without subsidy, could you currently afford it?
– If not, what other options do you have to purchase Ipilimumab?

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

Guiding questions for patients, carers, family and friends:
– Do you believe the two week commenting period is sufficient?
– Do you believe that the questions asked during the consumer input process are appropriate? If so, why? If not, why not?

How to submit comments for the PBAC’s November meeting

Your comments can be submitted from 26 September until 10 October. There are three ways to do so:
1. Online at the Department of Health & Ageing website by clicking here or type this address in your web browser: http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
2. Call (02) 6289 8592 to request a form and send the completed form to the Department of Health & Ageing before 10 October
3. Write a letter of support and send it to PBAC, GPO Box 9848, Canberra, ACT 2601 before 10 October.

The PBAC will consider all comments submitted by 10 October.

MPA will send the outcome of the PBAC meeting to all members six weeks after the November meeting.
You can get more information by clicking here or you can type this address into your web browser: http://www.health.gov.au/internet/main/publishing.nsf/Content/health-pbs-general-outcomes_full.htm

Need further information or support?
Please contact Melanoma Patients Australia on 1300 88 44 50.

1 For patients with unresectable or metastatic melanoma who have failed or are intolerant to prior therapy. For more information about ipilimumab, refer to the Consumer Medicine Information. Medicine Information.