participate in online study cll Aus

[Chrisfer]

Hi everyone,

I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate. I was then contacted and asked if I knew of others interested in participating in an online survey and I am consequently forwarding the contact of the Production Manager in case any others on our community are interested in taking part and sharing their experience of Cll.

I think it's great news that at least some steps are underway in listing this kind of treatment on pbs and giving people a choice possibly outside FCR.

Anyone interested please contact:

Manuel DIAZ

Production Manager

Tel: [phone] - Fax: [phone]

Stay well best wishes to all!

chrisfer

[Ansll]

I am on Ibrutinib in Melbourne. I will give him a buzz.

[AussieNeil Partner Administrator in reply to Ansll]

Please ask who he represents. It would be most unusual for a new drug as expensive as Ibrutibib to gain approval from the PBAC the first time it is presented for approval. I wasn't able to find a match for Manuel DIAZ's name or phone number with an Internet search.

Thanks,

Neil

[Chrisfer in reply to AussieNeil]

I think this is a first step in the process toward gaining approval. It sounded like they were collating info from patients' experience in the process of presenting a case for PBS?

Will get back on whom they are representing

Cheers

[AussieNeil Partner Administrator in reply to Chrisfer]

Janssen's fax number in Australia is listed as 02 9815 3300, which doesn't match the area code you gave. That's not to say that they don't have multiple sites or that they don't have a production manager in Australia, but I'm rather suspicious about how you were contacted for an anonymous phone survey regarding listing of Ibrutinib on PBS. How did they obtain your contact details? They must know you have CLL somehow...

I appreciate that you were only doing what you considered was best for the CLL community. We all want access to Ibrutinib in Australia, but it needs to be achieved on terms beneficial for Australians.

We need to find out about what's happening from an independent and reputable source. I'll see what I can find out.

Neil

[Chrisfer in reply to AussieNeil]

Have now remembered that the original phone number was given out on air by radio 2UE a couple of months ago as a study looking for cll patients. I contacted the number and it went from there.

[AussieNeil Partner Administrator in reply to Chrisfer]

Thanks for that additional info. Both of my Leukaemia Foundation contacts that are involved in CLL drugs representation currently unavailable. I think they are both at a Services Support planning meeting. I'll provide an update when I hear more.

Neil

[Chrisfer in reply to AussieNeil]

Thanks Neil

Look forward to hearing more on this

[AussieNeil Partner Administrator in reply to Chrisfer]

Just heard back from the Leukaemia Foundation. They "are aware that some of the pharma companies in Australia have contracted marketing and PR companies to try and gather information from CLL patients about their experience of CLL, its impact on their life and what is important to them as a person living with CLL. This is why you are hearing about it on radio in Sydney etc."

I'll post about how you can put your own submission into the PBAC later.

Neil

[Chrisfer in reply to AussieNeil]

Thats great, thanks Neil

[Chrisfer in reply to Chrisfer]

Always pays to be unfortunately. Don't see how it could turn badly? Maybe I'm too naive??

[Cllcanada Top Poster CURE Hero]

I get similar emails a few times a month. They often offer patients money for their stories, and they sell the information on to other companies.

PLEASE...Be very careful. If they in fact represent Janssen in Australia, then ask for the survey project details, and the contacts at the company... then verify and trust.

chris

[Ansll]

Thanks for your information. I will not participate until it is all safe and sound.

Anneke