Making a Difference: Leaders in Advocacy From the MPN Alliance Australia Share Their Story - 2 | Transcript | Myeloproliferative Neoplasms | Patient Power


Making a Difference: Leaders in Advocacy From the MPN Alliance Australia Share Their Story

Ken Young:

I think the important thing is two steps of history back. Quite a few of us had been trying to crack the nut of how to get Pegasys listed, and it was so bureaucratic and so difficult to negotiate the pathways through. And what Nathalie did was having the real knowledge as well about how the system worked; building relationships with the PBAC, but also the drug company.

Previously, Pegasys was only listed for treatment with hepatitis C here in Australia. A lot of the drug companies weren’t prepared – they didn’t really have a market to bring forth some of these drugs. So, what the patient side of it was is we also used our community to lobby. There was a Senate inquiry that looked at access to drugs, so we mobilized, through social media and through email lists, submissions in the first instance to the Australian Senate in an inquiry.

So, it also was about the process of consciousness-raising amongst the patient community that we could actually actively take on these requirements. And I think it’s just as much raising the awareness and saying you can do it.

I was diagnosed 20 years ago and probably never expected to see the changes that have happened in the MPN field since then. You know, the discovery in the early 2000s of the JAK2 mutations and then the development of the JAK2 inhibitor treatments. And that has opened it up and I think it’s really, really important to understand the patients are our own best experts on our diseases. And we can be angry. A lot of us, we can still make a significant impact. And I think that’s the important takeaway to the story, is to keep plugging away.

I know Nathalie has been at this for quite a while, and people before, and the community. But it’s about keeping the faith, I suppose.

Andrew Schorr:                    

Right, right. Well, I think this is really a universal message. As you know, before Esther and I were in your city, we were in New Zealand, and we met with patients there. So, fewer patients, much smaller country, really no specialists, and also a government strapped with trying to pay for different medicines, and really not knowing about MPNs as well. So, in their country, ET and PV are not even listed or there’s no registry keeping count of those people and whether they, in fact, are living with a cancer; myelofibrosis yes, but the other two, no.

So, a lot of, I think, what’s going on in your country and I think can happen in others is to your credit, both of you, and with the MPN Alliance in Australia and the Leukaemia Foundation, is bringing people together so there can be 100 Nathalies or 1,000 Nathalies. And obviously, with the smarts that you have, Nathalie, of how to navigate the system, but with more impact; speaking to more senators, more government officials.

And it’s so interesting and we’re having the same thing in the U.S. Where the gentleman gave the speech about wanting to hear the voice of the patient and they’re saying that in the U.S. as well, but they’re often not hearing it or not effectively listening. Where it’s not coming through with clarity and I think that’s what we can work on. But Nathalie, to your credit, you hit all the steps.

Nathalie Cook:                     

Thank you, Andrew.

Andrew Schorr:                    

And I think it benefited a lot of other patients. So, it really is about self-advocacy for patients in getting to the right healthcare team. And then it’s community advocacy, a way to know you’re not alone, but also to the community to have the options available to them.

And Nathalie, you should really be commended. So, how are you doing? How’s your health these days?

Nathalie Cook:                  

Thank you, Andrew. I’m very well, thank you. And I’ve recently had a third bone marrow biopsy; the third I’ve had in the 10 years since my diagnosis. And it seems to be that the fibrosis that was developing has regressed. So, my hematologist said that looking at my bone marrow, she couldn’t actually tell that I’ve got MPN now. This bone marrow biopsy looked like mild to moderate fibrosis six years ago, but the last one only showed very mild fibrosis. And she said she knows I have MPN because I’m JAK2 positive, but my bone marrow biopsy was looking really great and I’m feeling really well as well.

Andrew Schorr:                

That’s great. Ken, what about you? How are you doing?

Ken Young:               

I’m traveling quite well. I’m actually not using pegylated interferon. Since 2006, I’ve been using Roferon and I’m, again, traveling well. I took the decision, even though it’s available, when it’s not broken, don’t try and fix it.

Andrew Schorr:    

Yeah. For Nathalie, it was broken.

Nathalie Cook:                     

Yes.

Ken Young:                           

Yes, for Nathalie, it was broken, but for myself, I’m traveling all right with the Roferon at the moment.

Andrew Schorr:                       

Okay. Well, I think the point is we’re all gonna be different. We’re gonna react to different medicines differently.

Ken Young:                         

Absolutely.

Nathalie Cook:                    

Yes.

Andrew Schorr:                      

And our journey may be different with an MPN. As science identifies more effective treatments, even for certain subsets, if we’re in that subset, we wanna make sure it’s available to us.

Ken Young:                     

Absolutely.

Nathalie Cook:                     

Yes.

Andrew Schorr:                   

So, we’re all about advocacy and I really commend all the work that you do. The two of you as volunteers of the MPN Alliance Australia, the Leukaemia Foundation, that collaboration and working with doctors who, Nathalie, you said they were helping you tell the story. And I’m really glad that both of you are doing well. And Nathalie, I hope that bone marrow biopsy, not that anybody wants to have them frequently, but they continue to look better and better.

Nathalie Cook:                     

Thank you, Andrew.

Andrew Schorr:                    

Okay. And Ken, it was great seeing you in person in Australia and all the great folks we got together, Nathalie couldn’t make it that night, but really meeting some of you in person. And our commitment at Patient Power is to tell more of these stories. There’s no shortage of American stories, but there are certainly Australian stories, New Zealand stories, European stories and lessons to be learned worldwide.

So, I want to thank you for sharing the story of advocacy and the progress you’ve made in Australia. Nathalie Cook, thanks for being with us.

Nathalie Cook:                     

Thank you very much, Andrew, for having me.

Andrew Schorr:                      

Okay. And Ken Young, thank you. All the best to you too.

Ken Young:                           

Great pleasure. Thank you very much.

Andrew Schorr:                     

Andrew Schorr recognizing that we patients, we have a worldwide story to tell and isn’t it great that we can connect this way to bring us together, share stories, and really take action that can make a difference. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on February 28, 2019