I have some pretty big and exciting news!
I am off to Tokyo, Japan in April to be the first patient guest speaker at the 9th Asian Regulatory Conference (ARC) co-hosted by the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) and Japan Pharmaceutical Manufacturers Association (JPMA). The conference’s (held over two days) key purpose is to “exchange opinions and/or seek recommendations on the regulatory environment in Asia and other regions as well as from international organizations and the pharmaceutical industry.”
In a time where medical advances are making innovations at an all time high, I see this as a real opportunity to add weight to the need of strong patient voices to ensure that our regulatory review systems, here in Australia and globally, hold a comparable review process so that patients the world over can see achievable expedited treatment access. Although the focus of this conference is predominantly for the Asian region, as a world that is living longer but getting sicker younger, we all need to come together to better understand patient needs and what accelerate access means to a patient, and equally their family.
I’m not going to lie, as a patient that has gone through the highs and lows of Advanced Metastatic Melanoma and undertaken three (3) years of advocating on behalf of patients (mainly while on treatment), there are moments where this can take its toll on me personally and I often take reprieves from this space. It is opportunities like this however, that I see that I can add impact and weight to the patient voice initiative and I push the personal emotions to the side so that I can stand up and talk on a topic that I strongly believe in. Fast, reliable, financially assessable, life-extending treatment access for patients – that has quality of life of the patient at the forefront of care. This is an opportunity to share these views on a global scale!
The Section I have been invited to address is on Acceleration of the Regulatory Review Process for Innovative Medicines and I will discuss “What expedited regulatory review means to patients”. While I am humbly honoured to be the patient guest speaker for this conference, I feel that I am unable to do the topic full justice if I do not invite you to provide your own perspective, be it as a patient or a carer. My speech needs to be broader than my own personal experience and that’s why I need your help!
What I ask of you!
I ask patients and carers (within my community) who have experienced a similar situation as myself, whereby you have been granted accelerated access to treatment drugs, either through compassionate grounds, through clinical trial or successfully through an expedited approval review system by our Therapeutic Goods Administration and further Pharmaceutical Benefits Scheme access to please contact me by email at firstname.lastname@example.org with a short paragraph of what this access has meant for you and your family by 17 March 2017. Your personal and practical perspective would be greatly appreciated.
Being optimistic that I will get a number of responses from your beautiful selves, I will only select a handful to present at the ARC within my brief allotment of time, so henceforth I will require your permission to use your words within my presentation and your first name and age (should you wish). I ask that you refrain from providing in-depth personal details but rather keep to the above topic at hand.
Your assistance will help me to keep aligned to my topic of discussion as well as ensuring that I remain an impassioned and understanding patient voice. Please feel free to share with a friend or family member that would wish their views to be included.
Thank you beautiful souls and I can’t wait to share this amazing experience with you and hopefully get an opportunity to photograph a cherry blossom or two – a lifelong dream!
With love, light and bundles of gratitude, Kathy xx
For more information visit 9th Asian Regulatory Conference (ARC).
Photo credit: Galen Crout, Unsplash