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?
10 comments
It’s a tricky one and anyone who sits in a particular group with a need for costly medication is likely to be biased by their own situation – it’s human nature. I wonder what their policies are for establishing the medicines which are subsidised. Stopping by on the rewind.
I agree it is a tricky one. And I whollly admit my bias.
For most drugs on the PBS they are reviewed by an independent panel that looks at its effectiveness and cost effectiveness before making recommendations for approval. The life saving drugs program that most of the drugs above fit under make the measure for effectiveness but not cost effectiveness.
I guess my frustration stems from the fact that for drugs there is a mechanism for review and funding. There is also a very large number of powerful lobbyists from the pharmaceutical companies getting into government and stirring up public passions. For treatments by allied professionals (like psychologists, speech therapists etc) there is nothing.
And if you look at it purely from a economic perspective … one pays billions to multinational companies employing people overseas and the other is employing Australians .. training Australians for a better future for Australians.
I do have sympathy for families that would benefit from expensive drugs … but I have more sympathy for families that I know and have seen that spend everything that they have with really no support. The difference between the standards of care offered between those that are treated by doctors , drugs and hospitals is massive. Seriously if you think the hospital system is broken you haven’t seen the supports for Mental Health. I have seen families who have lost everything to help their children because if they didn’t there would be no support. I know of many families where they just can’t afford it … they do the best that they can but it would break your heart to know how much better their children would be with the proper care. The crazy thing is there are so many reports that the government has commissioned. They know what is needed but still do nothing.
If we were talking about cancer this just wouldn’t happen. It would be on all the news programs. Pictures of sick children with large puppy eyes staring out … asking the question why won’t you help me. Unfortunately children with Autism can’t do that. Many can’t speak at all. And so it is ignored.
I know I can get very passionate about this topic … but if you had seen what I have seen. Just here in Sydney with families from all backgrounds. It would break your heart too. Thanks for dropping by 🙂
It’s a tricky one and anyone who sits in a particular group with a need for costly medication is likely to be biased by their own situation – it’s human nature. I wonder what their policies are for establishing the medicines which are subsidised. Stopping by on the rewind.
I agree it is a tricky one. And I whollly admit my bias.
For most drugs on the PBS they are reviewed by an independent panel that looks at its effectiveness and cost effectiveness before making recommendations for approval. The life saving drugs program that most of the drugs above fit under make the measure for effectiveness but not cost effectiveness.
I guess my frustration stems from the fact that for drugs there is a mechanism for review and funding. There is also a very large number of powerful lobbyists from the pharmaceutical companies getting into government and stirring up public passions. For treatments by allied professionals (like psychologists, speech therapists etc) there is nothing.
And if you look at it purely from a economic perspective … one pays billions to multinational companies employing people overseas and the other is employing Australians .. training Australians for a better future for Australians.
I do have sympathy for families that would benefit from expensive drugs … but I have more sympathy for families that I know and have seen that spend everything that they have with really no support. The difference between the standards of care offered between those that are treated by doctors , drugs and hospitals is massive. Seriously if you think the hospital system is broken you haven’t seen the supports for Mental Health. I have seen families who have lost everything to help their children because if they didn’t there would be no support. I know of many families where they just can’t afford it … they do the best that they can but it would break your heart to know how much better their children would be with the proper care. The crazy thing is there are so many reports that the government has commissioned. They know what is needed but still do nothing.
If we were talking about cancer this just wouldn’t happen. It would be on all the news programs. Pictures of sick children with large puppy eyes staring out … asking the question why won’t you help me. Unfortunately children with Autism can’t do that. Many can’t speak at all. And so it is ignored.
I know I can get very passionate about this topic … but if you had seen what I have seen. Just here in Sydney with families from all backgrounds. It would break your heart too. Thanks for dropping by 🙂
Wow, you raise some tough questions here. As Muddled Up Mumma says, we are all driven by our own particular situations. I can see why you’re passionate about this topic, particularly given the big difference that the Autism drugs can make for a lifelong affliction. I do believe that the awareness that is now being raised about Autism and its effects on families will make a difference. As with all things Government, however, I fear that you are in for a long haul. It seems to take so much time to effect change.
Visiting from the Rewind.
Wow, you raise some tough questions here. As Muddled Up Mumma says, we are all driven by our own particular situations. I can see why you’re passionate about this topic, particularly given the big difference that the Autism drugs can make for a lifelong affliction. I do believe that the awareness that is now being raised about Autism and its effects on families will make a difference. As with all things Government, however, I fear that you are in for a long haul. It seems to take so much time to effect change.
Visiting from the Rewind.
It is certainly a difficult question (thank God I am not in charge of the health budget. How could you sleep at night?) The programs for Autism are improving, slowly, slowly, but there is still a huge burden of cost on the parents. I wish you all the best in your battle with this injustice. Thanks for Rewinding x
It is certainly a difficult question (thank God I am not in charge of the health budget. How could you sleep at night?) The programs for Autism are improving, slowly, slowly, but there is still a huge burden of cost on the parents. I wish you all the best in your battle with this injustice. Thanks for Rewinding x
It’s so hard when there are so many people needing assistance and so little funding (comparably) to go around. None of us want to see someone we love missing out on crucial treatment but this is a reality many face. I hope Autism awareness is raised and more funding is allocated.
Rewinding with the Multiple Mum
It’s so hard when there are so many people needing assistance and so little funding (comparably) to go around. None of us want to see someone we love missing out on crucial treatment but this is a reality many face. I hope Autism awareness is raised and more funding is allocated.
Rewinding with the Multiple Mum