Right to Try

 

All quiet on the health front.  I had my 24 month check up on the trial and I’m still MRD negative and bloods are all good – it’s very nice being a boring patient.  Two years ago next week I tentatively took venetoclax for the first time and I still take 400mgs daily with no apparent side effects.   I feel very very lucky to be on this miraculous drug which is approved here but not yet funded.  Ibrutinib goes on the PBS in December and approximately 900 patients in Australia will now be able to access it which is fantastic news.  Hopefully venetoclax won’t be far behind.  In the meantime I’m continuing the campaign to try to get these drugs made more readily available for patients who need them.   This week that campaign took me onto Sky News where I was interviewed by Andrew Bolt on the Bolt Report…a real highlight for me as I’m such a fan of his.   Those who know my story may note the timeline is a bit truncated in this interview but I didn’t want to correct him when he said I was diagnosed two years ago so went with the flow – it also meant I shaved 4 years off my life and it’s nice to be 40 again!   A couple of friends pointed out that I looked like I was paying homage to Hugh Heffner with my choice of outfit – oh well it was inadvertent but nothing like putting the sex into venclexta and Andrew actually mentions viagra briefly in the interview because I was interviewed on the young IPA podcast by his son James and pointed out that one of the benefits of patients trying new drugs can be unexpected positive side effects (such as a cure for male pattern baldness with ibrutinib and erectile dysfunction with viagra which was originally designed to be a heart medication).

https://ipa.org.au/podcast/young-ipa-podcast-episode-33-dr-bella-dabrera-deborah-sims

 

 

This followed an Op Ed in the Herald Sun and my latest article in the Institute of Public Affairs IPA Review magazine.

Herald Sun Right To Try article

https://ipa.org.au/publications-ipa/ipa-review-articles/right-try-revolutionary-legislation-america-returns-sick-people-fundamental-right-save-life

I’m feeling so well, working full time now and the children are thriving.  I’m helping the Walter and Eliza Hall with their fundraising and had the honour of speaking to scientists there last month – it was great to see Professors David Vaux and Andrew Roberts in the audience – if not a little intimidating.

170525-Guide to Giving ad June 2017

Life is good and I don’t need to fly to London now until the first week in January so will be making the most of the warmer days here down under.  Thanks for being with me on the journey!

 

 

One thought on “Right to Try

  1. Wow you have been busy. My son was only just saying to me the other day “why can’t you sign a waiver to try these drugs”. Looks like you are all over it. Had no idea about this RTT in the US. Am sharing this on my FB page to help raise awareness. Thankyou Deborah. My husband is lucky enough to be on a trial here in Australia. Fingers crossed that one way or another venetoclax will be available to you here in Australia sooner rather than a decade or longer.

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