NEW subsidised Acromegaly treatment in Australia

Health Minister has approved the listing of Pasireotide on the Pharmaceutical Benefits Scheme in Australia. The $10million subsidy means patients will get access to Pasireotide for $38.30 or $6.20 with a concession.

Pegvisomant (Somavert) is an injectable medication used in the treatment of uncontrolled acromegaly, where therapies used (which are very effective) have failed to meet the desired effect in some patients.  The PBS listing of this new treatment for acromegaly from the 1st of September is welcomed news for patients with acromegaly.  



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As Acromegaly is a debilitating disease that at times cannot be adequately controlled by current available subsided therapies, Australian Pituitary Foundation welcomes the accessibility of an additional subsidised treatment in Australia. 

Due to the reduced life expectancy of patients with Acromegaly, effective management of the disease is critical to enable the best possible outcome for the patient. 

With so many associated complications caused by excess Growth Hormone circulating through the body, patients experience a very low quality of life, which has a flow on impact to their families who are supporting them emotionally, and at times financially and physically.
 
This disease causes a multitude of associated complications including overgrowth of soft tissues and internal organs, bone, joint, vertebrate changes and cardiovascular complications. The consequential physical changes have implications on a patient’s self-esteem and general sense of well-being.

The Australian Pituitary Foundation’s mission is to support and educate people impacted by pituitary conditions, one being Acromegaly.  We convey awareness and provide relevant information to the general and medical communities and act as a collective voice for pituitary patients and their families.

Australian Pituitary Foundation commends the Minister for Health for the decision of approving an additional subsidised treatment for Acromegaly in Australia. This would provide patients whose previous therapies have failed, better access to an additional proven treatment option. 

Increasing treatment options available to patients will allow more effective disease management and will potentially accelerate alleviating the debilitating symptoms, improving patient’s quality of life, life expectancy and also have positive flow on effects to the patient’s families and day to day life.


Thank you to Stephanie who agreed to be interviewed,
http://www.smh.com.au/federal-politics/political-news/gigantism-sufferers-to-benefit-from-new-miracle-drug-subsidy-20160813-gqrq9t.html
http://www.dailymail.co.uk/news/article-3739560/Australian-government-subsidise-50-000-drug-treats-gigantism.html

And to Claire and Pete who assisted with our consumer campaign to support the Pegvisomant submission. 

Click here to view Claire
Clickhere to view Pete


Read our newsletters which discuss different aspects of too much growth hormone circulating the human body.

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NL56      NL73

Fundraising News

One of our new members is extra-ordinary! And what a little cutie is her son, Jack!. 

Lisa is very active in assisting the Foundation gain funds to continue it’s important work. Here is Lisa’s story…
 

Jack is 7 years old, in his short life he has underwent many medical and life style challenges. We have had overcome so many hurdles. His most recent diagnoses of hypopituitarism is a rare disorder in which your pituitary gland either fails to produce one or more of its hormones or doesn't produce enough of them.

Within 12 months Jacks been diagnosed with growth hormone deficiency, adrenalin sufficiency and secondary hypothyroidism. It’s frustrating and scary as a mother - as even most doctors, nurses and paramedics don’t know how to treat adrenal insufficiency. Jack’s conditions can be life threatening if not treated or properly managed day to day. Something as small as heat or gastro bugs can make Jack really sick, and he requires emergency medicine. Jack has already experienced 2 adrenal crisis…

Those that know my boy know he has the heart of gold and that of a super hero fighting his own battles he never complains and will live with this for the rest of his life along with the high possibility of other hormones shutting down.

Jack and I walked together in the City to Surf on 14 August.  


 


Change over of the Guards

A wonderful evening was held in Sydney on the evening of 28 May to officially say good-bye or recognize a number of people who have worked tirelessly for the Foundation over many years.  Lloyd Roever, Founder of the APF was the guest speaker.  Lloyd highlighted the difficulties back then of finding suitable treatment for his son, thus his drive for forming a Foundation for people with pituitary disorders, with colleague Ron Waters. Lloyd was a very entertaining speaker and we thoroughly enjoyed his presence. 

 
 

Lloyd  presented the following presentations:

Russ Fairweather:  (life)

 

Russ has been a member since 2001.   Russ moved to Australia from the UK in 1982 with his wife Jan and children.  He was treated with transsphenoidal surgery in 2000 for a macro-adenoma and stereotactic radiotherapy shortly afterwards.    Russ became a Director of the Foundation in 2003 and held the position of treasurer till 2007.  Russ retired late last year, however he and his wife Jan would like to continue to volunteer for the Foundation.

 
   

Eric Kozij:  (life)

  Eric has been a member since 1997. He was instrumental in setting up the QLD Branch of the APF that year and continues to help support people, not only in QLD but nationally.  His special interest is to speak with other men who are carers/partners of someone with a pituitary illness.  Eric has been a Director of the Foundation since 2007, retiring at the dinner, and will continue on as a volunteer.
   

Noel Hickey:  (life)

  Noel has been a member since the 2002 and became a volunteer for QLD branch shortly afterwards.  Noel was treated for a maco-adenoma some 40 or so years ago, and has kept very well since.  He came on as a Director in 2007, and the following year Noel took on the role of Chairperson when the Foundation underwent some changes.  Noel retired last year.  Noel will also continue on as a volunteer to QLD branch.
   

Daniel Blomfield:   (recognition)


Daniel has been the local contact for social events in NSW since 2009.  He came on board as a Director in 2011 and retired recently.  Daniel is receiving treatment for ongoing Acromegaly since his surgery many years ago, and presents talks on his condition to endocrine nurses and the public in general.  Daniel featured in the TV Series “RPA” and“RPA - Where are they now” to promote awareness of pituitary gland conditions.  Daniel will continue on as local contact for support activities in NSW
   

Peter Marsh:   (recognition)


Peter has been a member since 2009.  He has been the local contact for social events in WA since 2012 and will be retiring at the end of the year.  Pete was treated for Acromegaly in 2008, with residual tumour remaining.  He recently took on a study with Pegvisomant which has now put him in remission.  We will miss Pete, and wish him all the very best.



Centrelink Presentation


Exciting News!!!


Professor Kenneth Ho accepted an invitation from APF to attend a Centrelink Conference in Brisbane to assist staff in the understanding of the disabilities of patients with pituitary disease.

85 health and allied health professionals attended, and APF were impressed with the amount of general knowledge they knew of these rare and poorly understood diseases.


ken ho centrelink 2015

Dr Ken Ho presenting to Centrelink


To further their knowledge we distributed a number of our booklets and promoted access to the Health Professional Portal of our website for their further interest.  We also took the opportunity of promoting APF support, and the services we provide to patients and health professionals.

Professor Ho has been an ongoing supporter of the APF since its inception, and we thank him for continually giving his time.