Blog

aPSGA treasurer walks for support of rare diseases

Rare Friends, a community of people supporting family members, friends and people in Far North Queensland living with rare diseases, hosted their Rare Disease Day ‘Fun Run and Walk’ in Cairns on Sunday, February 22, 2015 to raise awareness of rare diseases. aPSGA treasurer, MrsDebbie Basham, who has been living...

read more

Dr Suzanne Hill to step down from PBAC this March

In news set to shake up the Australian pharma industry, Pharmaceutical Benefits Advisory Committee (PBAC) Chair, Dr Suzanne Hill, will step down from her role following the Committee meeting in March this year. Dr Hill will assume a new role with the World Health Organization – her previous employer where...

read more

NICE funds Soliris in the UK – January 29, 2015

Soliris (eculizumab) for aHUS has been granted a positive recommendation to be placed on the National Health Service (NHS) in England. On January 28, 2015, exactly two years and nine days after aHUS UK were informed Soliris would be referred for evaluation to the National Institute for Health Care and Excellence (NICE)...

read more

NICE funds Soliris in the UK – January 29, 2015

Soliris (eculizumab) for aHUS has been granted a positive recommendation to be placed on the National Health Service (NHS) in England. On January 28, 2015, exactly two years and nine days after aHUS UK were informed Soliris would be referred for evaluation to the National Institute for Health Care and...

read more

An early Christmas for Sarah – December 17, 2014

We are excited to announce that aPSGA member, Sarah, 28 from Cairns has received her first government-subsided dose of Soliris (eculizumab) in Cairns today (December 17, 2014). Sarah was diagnosed with aHUS in April, 2014 and ever since has fought, like other aPSGA members, for subsided access to the only...

read more

A story that is far too close to home; Canadian aHUS patient lobbying government for access to Soliris – December 9, 2014

Toni Vernon, a 59 year old Canadian mother-of-four, is lobbying her provincial government for access to the only treatment that will allow her to lead a normal, active, healthy lifestyle. Her harrowing story echoes the experience of our aPSGA members for most of this year. In an article published in...

read more

Media release – PBS listing grants aHUS patients gift of life – December 1, 2014

Media release MONDAY, DECEMBER 1, 2014  FOR IMMEDIATE USE  PBS listing grants aHUS patients gift of life The aHUS Patient Support Group Australia (aPSGA) welcomes today’s (December 1, 2014) listing of Soliris (eculizumab) under Section 100: Highly Specialised Drugs Program on the Pharmaceutical Benefits Scheme (PBS) for the small group...

read more

Compassionate supply of Soliris to cease following PBS listing – November 17, 2014

Medical receptionist, Sarah, 28, Cairns, had lived her entire life with Cystic Fibrosis (CF) until September, 2013 when she received a double lung transplant. Following transplantation, Sarah visited hospital for weekly blood tests and follow-ups, with a biopsy confirming her treatment had started to compromise her kidney function. While her...

read more