Jan
12
January 7, 2011: A new me; a new look; a new approach; a new beginning; a new life.
At the turn of each year these words whizz around in our heads and are boldly scripted in our journals in the hope of self-improvement.
For the 100 Australians living with the ultra-rare and life-threatening blood disease, Paroxysmal Nocturnal Haemoglobinuria (PNH), these words are ringing true. On January 1, 2011, this patient population was granted subsidised access to Soliris®, the only effective treatment for PNH, evaporating their fears of a looming death sentence.
This positive outcome followed a turbulent roller coaster ride during 2010 endured by both the PNHSAA (PNH Support Association of Australia) and the VIVA! Communications team, who joined forces to lobby the Federal Government to place this treatment on the Life Saving Drugs Program (LSDP). Following relentless lobbying and a plethora of media coverage, the PNH plight captured the attention of the Prime Minister, The Hon. Julia Gillard MP, the Federal Minister for Health, The Hon. Nicola Roxon MP, many other MPs from various parties and thousands of Australians nation-wide.
Jenny Sturrock, 28, Secretary of the PNHSAA, who is also living with PNH, has chosen to share her appreciation for the passion, hard work and dedication that our agency invested in this long and incredibly challenging PR campaign.
“I just wanted to share with you my excitement as I had my first dose of Soliris® on Friday, January 7, 2011. As you can tell from the smile, it was a terrific moment…”
“After being diagnosed with Paroxysmal Nocturnal Haemoglobinuria – a rare and life threatening blood disorder, I thought things couldn’t get any worse. Little did I know this was only the start of a long journey that would involve exhaustive lobbying of the Australian Government to secure funding for Soliris® – the only effective treatment for PNH. After funding was left out of the 2010 Federal Budget, myself and the other PNH patients were left shell shocked and terrified.
Engaging VIVA! Communications was the one light of hope we all desperately needed. The staff were so compassionate and considerate of our needs and worked tirelessly each and every day of our campaign to make sure the plight of PNH patients was never forgotten.
“The team were efficient, professional and above all lovely and sincere, and made dealing with the media a little less daunting. I can honestly say that a real friendship was built between myself and the VIVA! team over the months we worked with them, and they were all extremely genuine in their joy when we finally reached our goal and secured the funding approval. I would not hesitate to recommend VIVA! Communications to anyone and I believe that one of their strengths is the attention they pay to the needs of the people they are working with, including helping people who have no media experience prepare and deal with the interactions that go on during a media campaign. The support they gave me made me feel confident and positive during a time that was personally very challenging.
“Thank you again for everything you have done for me and the PNH community! I hope you all take a moment to realise what an impact you have made on my life and of the lives of all the other patients and their family and friends. It’s truly remarkable.”
