Meeting the Minister

A delegation of representatives from the Australian cystic fibrosis community gathered in Canberra at Parliament House on 28 May, largely to discuss the delays in having Kalydeco listed on the Pharmaceutical Benefits Scheme.  Two members described the experience.

 

Kate McPherson

I met Minister Dutton briefly in the rose garden at the morning event. As soon as I approached him we were immediately and overwhelmingly surrounded by cameras; I guess this is his life and he gets lobbied by people like us all the time. I remember trying to show him a photo of Brody, and I had to ask him several times to look at it before he would. I told him my boy needs Kalydeco to prevent lung disease and stop him getting sick. As a newly diagnosed family it was daunting to be part of the event and meet others involved in the issue, particularly those who have accessed Kalydeco on compassionate grounds. I feel like we have such a hard road ahead of us if Brody cannot get Kalydeco; emotionally, financially, socially. I found attending Canberra last week exhausting for all of these reasons, but I am very glad I did it. I need to feel that I have personally done my absolute best to get Kalydeco in the hands of everyone who can benefit.


Faye Upston

I am very thankful to CFV for giving me the opportunity to travel to Canberra. After months and months of attempting to meet with Minister Dutton, it really meant so much to my husband and I to be able to speak with him finally. I am also grateful to my local MP Russell Broadbent, who RSVP'd at the last minute. It was because of him I had the opportunity to speak with Minister Dutton in the morning event. He lead me to the Health Minister and loudly said "Minister Dutton, please allow me to introduce one of my constituents", instantly Minister Dutton came and spoke with me. 

The Minister expressed personal compassion and empathy, and speaking with him was easier than I'd expected! However in terms of action as the Health Minister, he said in his speech that he as a politician will not interfere with the PBAC process, because he is not a "scientist or a doctor" ... but as far as I am aware the PBAC process is complete? It is now in the hands of the Health Department, and I very much believe Minister Dutton has the power to make the difference. He then reiterated his Government has just created a 20 million dollar fund (that will go into cancer and alzheimers research) which was just salt in the wound, really: they have money, but the CF community are obviously not prioritised.

We have lobbied and pleaded for this life saving drug for over a year now. We have shown them the life changing results, we have shown them the desperate need and immense suffering people are experiencing at the hands of cystic fibrosis. It defies all human compassion why Kalydeco is not available in Australia right now for all G551D patients. If there was something I could do that would influence the immediate funding of Kalydeco, I would do it in a heartbeat, but our lives are in the hands of the government. The situation is brutally cruel... torture in fact for those who know that two pills a day can give their loved ones a normal life, but they are being indefinitely denied.

Even though no one went to Canberra thinking we would get Kalydeco funded on the spot, I think we had hoped for a more affirmative message from Minister Dutton. Elsewhere during the event we found Senator Claire Moore, Senator Anne Urquhart, Russell Broadbent MP, Julie Collins local member for Franklin, Catherine King MP, Scott Buchholz MP, and Ken Wyatt MP to be very supportive. If these are your local members please write to them or call their office and request meetings. Or if not then please contact your own MP - ask them to advocate for Kalydeco and Cystic Fibrosis on your behalf to the Health Minister. 

Mr Dutton began an address to the National Press Club by invoking his morning meeting with cystic fibrosis patients and the need to fund high-cost treatments as one of the main rationales for the Government’s tough Budget. It's a shame for the CF community to be treated as a politic football...and still not see any benefit from it!