Advocacy during the past year

[JimJimJimJim]

You will have noticed that the other members of our Executive Committee (Alan Barlee, Nev Black, Paul Hobson, Tony Maxwell) make an enormous contribution to our monthly phone-in meetings, to information and discussion posted on our website (JimJimJimJim.com), and to general support of our members by phone, email, and at Face-to-a-name members' meetings. 

 

What you may not be aware of is that your Executive Committee also spends much time and effort in advocacy duties on behalf of the group. Below are some advocacy events held during the past year.

 

Please be aware that where I am listed as the sole attendee below, most often, most of the background work has been done by other members of the Executive Committee.

 

Health Week Launch

This event, co-sponsored by the Prostate Cancer Foundation of Australia (PCFA) and Astellas (vendors of Xtandi (enzalutamide)) was a press briefing in Sydney to help the press focus on actual men with advanced prostate cancer in their Health Week reporting. After a formal presentation, Paul, Alan, Tony and I joined PCFA CEO Anthony Lowe in one-on-on discussions with members of the press about advanced prostate cancer and with Astellas staff about getting Xtandi (enzalutamide) on the PBS pre-chemotherapy. 

 

Later in the day I caught up with Sydney members of our group, and in the evening attended the Westmead Prostate Cancer Support Group. Before flying back next morning I met with Professor Peter Croucher at the Garvan Institute of Medical Research to discuss the research Professor Croucher's team is doing on finding and treating cancer that moves to bones.

 

Multi-parametric MRI scan and biopsy

The Medical Services Advisory Committee (MSAC) is an independent expert committee that recommends to the Minister which procedures should go on the Medicare Benefits Schedule (MBS). A multi-parametric MRI is a scan which can show more detail of prostate cancer, especially in the prostate. Australia's Radiation Oncologists made an application to have the multi-parametric MRI made a Medicare item. Your Executive Committee made a submission on your behalf to the MSAC supporting this application.

 

Pharmaceutical Benefits Advisory Committee (PBAC) review

The PBAC is the independent expert committee that recommends to the Minister which drugs should go on the PBS. You may remember that, as the result of submissions by our group and of many personal submissions on the drugs Zytiga (abiraterone) and Xtandi (enzalutamide) that I was invited to appear before the Senate Inquiry into the availability of new, innovative and specialist cancer drugs in Australia. Just one week after the Inquiry ended, Minister for Health Sussan Ley announced a review of the PBAC to "address technical methods issues raised by the PBAC and stakeholders".

 

A team at the University of Adelaide prepared a new set of guidelines for the operations of the PBAC, and Tony Maxwell and I attended the PBAC Guidelines Review - Presentation Forum in Sydney. Amongst a large group of pharmaceutical and medical experts, Tony's contribution beginning "I am a patient ... " had a striking effect. With not enough room for my scooter in the morning tea room I had to stay in the main auditorium. The only other person there was PBAC Chair, Professor Andrew Wilson, setting up his slides. When he finished setting up, he came over and we had quite a long and productive talk.

 

 

Office of the Minister for Health

All members of your Executive Committee met with Mark Kinsela, Senior Advisor to the Minister for Health at the office of the Minister in Canberra to discuss issues of import to men with advanced prostate cancer. In the generous 1 hour 20 minutes we were given we were able to cover many issues, and felt we were given a well-informed and probing hearing. Access on the PBS to the drugs Zytiga (abiraterone) and Xtandi (enzalutamide) before chemotherapy, and access on medicare to the  radiotherapy drug Xofigo (Radium-223) were, of course an important focus of the discussion.

 

PCFA support groups meeting

I met with PCFA senior staffers Amanda Pomery (National Manager, Support & Community) and  

Katie Dundas (Manager, Community Awareness and Education) a few weeks ago to talk about our issues as a support group. The changes that are happening to our website at the moment, and the new flexibility we have with our phone-in meetings are a couple of the results.

(Our next phone-in meeting will be an early evening one - a roundtable at 5:30 pm on Friday 24 June 2016.)

 

Getting Bayer Xofigo on Medicare

Earlier this month when plans for a meeting at Bayer in Sydney fell through, senior staff of Bayer Pharmaceutical and PCFA CEO Anthony Lowe flew to Brisbane to speak to me about the problems of getting Xofigo (Radium-223) on Medicare, as a result of a letter your Executive Committee had sent to Bayer.

 

It turned out that Bayer now feels able to re-reconsider an earlier approach they had abandoned, and that as a result of our discussion on Medical Services Advisory Committee (MSAC) guidelines they will more clearly identify the logjams and get back to us.

 

Election 2016

Your Executive Committee had made suggestions to PCFA about presenting a comprehensive policy document to parties for their support. Meeting with PCFA CEO Anthony Lowe, I came to support his opinion that a single policy item presented to all party leaders in person by Anthony would be in the best interests of men with prostate cancer. Executive Committee members concurred later in the day.

 

One week later, while visiting Launceston General Hospital in Tasmania, Shadow Minister King announced that the Labor Party has committed to securing the existing Department of Health funded prostate cancer nursing positions for a further 3 years from 30 June 2017 and will fund an additional 14 prostate cancer nurses across Australia. Anthony was scheduled to meet with other party leaders.

 

Getting Zytiga (abiraterone) on PBS pre-chemotherapy

Your Executive Committee sought to meet with Janssen (a Johnson & Johnson subsidiary) to discuss progress on getting Zytiga (abiraterone) on the PBS pre-chemotherapy. As a result, Janssen brought together a Prostate Cancer Patient Working Group meeting in partnership with PCFA last Friday 27th May 2016 in a meeting room at Sydney Domestic Airport. Anthony Lowe and Katie Dundas of PCFA, Paul Hobson, Alan Barlee, Nev Black, Graham Bloomfield, Kerry Drinkwater, David Abrahams, Zeni Muhiji and I attended. Several of those attending had abiraterone experience. We heard a presentation from Prof Gavin Marx on current therapeutics in advanced prostate cancer, and had some hours talking with Janssen staff about issues.

 

Disclosure

Your Executive Committee and other members taking part in the above advocacy activities above have signed various commercial-in-confidence agreements and will not be free to discuss details in those cases.

 

Only one of the activities listed above included a financial recompense for time contributed.

 

PCFA contributed travel costs in several cases, but travel and accommodation for the Canberra meeting were met by committee members themselves.

 

Personal note

An amazing thing about the Executive Committee members who assist me in running the Australian Advanced Prostate Cancer Support Group is that, as well as the enormous work they do for us, each takes a central role in their local Prostate Cancer Support Group, and on various research project teams, and general prostate cancer activities, stepping forward whenever a person is needed.

 

We have made great strides with our advocacy in the past three years. Members' submissions to the PBAC have paid an important part. But on top of that, the vital part paid by the other members of the Executive Committee, especially in the past year, had laid an important foundation for the next year. We can look forward to the reform of the PBAC/PBS process and hopefully getting pre-chemo approval for Zytiga, Xtandi and Xofigo at least.

 

I am proud to work with these men and with this group.

 

Jim Marshall

Convenor

Australian Advanced Prostate Cancer Support Group