As I have said before … within the Health budget there are alot of tough decisions that need to be made. Everyone can not be helped.It is a really sad fact but the Health budget is not unlimited and there are those that get funding and those that don’t. And in my opinion it is simple … if you get funding you are a priority and if you don’t … well your not. What is obvious though is that if your problem can be treated by doctors, drugs and hospitals you have a much better chance of getting funding … no matter how much it costs. Some of the most expensive drugs in the world are provided at for nothing to people under a program called the Life-Saving Drugs Program. And while I have tremendous sympathy for those that suffer from medical conditions, especially rare and complicated medical conditions, however the question has to be asked … is this fair? Why should treatment of conditions with very expensive drugs take priority over other conditions in receiving funding?
What is the Life-Saving Drugs Program?
The Life Saving Drugs Program (LSDP) provides free access for eligible patients to expensive drugs for serious medical conditions. Drugs included on the LSDP have been shown to be effective in extending the lifespan of patients suffering from life-threatening diseases. There are no other suitable, cost-effective therapies or drugs available through the Pharmaceutical Benefits Scheme (PBS) for the conditions treated under the LSDP.
So while these drugs can improve the quality of life and possibly extend the lifespan but they not cures.The big difference these drugs bring is in quality of life.
How much do some of these drugs cost?
Disease: Paroxysmal Nocturnal Haemoglobinuria (PNH)
Name: Soliris® (eculizumab)
Cost of drug per patient per year: more than $500,000
Potential outcomes with Treatment: Soliris® (eculizumab) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan
Disease: Hunter Syndrome
Name: Elaprase® (idursulfase)
Cost of drug per patient per year: up to $500,000
Prognosis if treatment not received: If left untreated, Hunter Syndrome leads to a very poor quality of life and early death.
Potential outcomes with Treatment: Elaprase® (idursulfase-rhu) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan
Disease: Maroteaux-Lamy syndrome
Name: Naglazyme® (galsulfase)
Cost of drug per patient per year: up to $500,000
Prognosis if treatment not received: .
Potential outcomes with Treatment: Naglazyme® (galsulfase) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan
Compare with Autism
Condition: Autism
Therapy and Supports: Therapy based including Psychology, Speech Therapy and Occupational Therapy and Supports to enabled Autistic Children to access the community
Cost of therapy and supports per person per year: up to $60,000
Potential outcomes with Treatment: Therapy can significantly improve quality of life Autistic People.
For every person treated under the Life Saving Drugs program how many Autistic children could receive therapy per year
- Soliris® – At least 8 people
- Elaprase® – Up to 8 people
- Naglazyme® – Up to 8 people
This is a cruel question … but is this fair? Personally I would like to see everyone helped but the Australian government can’t afford it. So is it far that up to 8 other people potentially miss out on therapy and supports because 1 person receives a very expensive drug. Is it fair that the potentially 8 other people face a life of institutionalization to improve the quality of life for 1 person?
I know that this is going to be controversial but what do you think? IMHO these are just the normal questions that have to be asked within the Health Portfolio. So, if you were Health Minister what would you do? Who would you help? Who is your priority?