Hard News by Russell Brown

The irony of all this penny pinching is that having diseases like this in the community actually cost more than treatment ever does. Even when people get the tests and find out what the the options are it is still not easy to access help even for the most savvy of us.

Sometimes even getting a diagnosis is blocked or made difficult because of the possibility of expensive treatment. Especially if there is a social stigma.

In the weekend I heard overheard a conversation between two social workers. This took place in a public area and while they didn’t identify anyone by name it was a bit scary.

The story was that someone was entitled to help with accomodation and that included various allowances. They had tried to claim before but this time went along with one of the social workers. Their request was granted but it was made clear that it was because of the presence of the social worker.

That social worker said that even though their “client” was entitled to help – the agency that person went to would get some kind of bonus if they were able to limit or prevent the claiming of the benefit entitlements.

It was like the PR line was – the government is here to help you but if the internal policies of the agency could limit or even prevent access – that is their real policy.

I understand that rationing of services is a reality but surely we all deserve a much more transparent accountability of the true costs of denying help?

– the government is here to help you but if the internal policies of the agency could limit or even prevent access – that is their real policy.

I stumbled across this the other day while seeking something else...

Disability support services
The Budget includes new funding of $42.296 million in 2016/17 and out-years for
disability support services. We heard that in June 2015 a shortfall of $45 million was
forecast for disability support services. We were told that the final shortfall was not as high as forecast because the uptake of the Funded Family Care policy was lower than projected.

A response to supplementary Estimates questions states that the expected shortfall of $45 million for disability support services has been significantly reduced because of careful demand management by the Needs Assessment and Service Coordination (NASC) services.
We asked whether any policy changes lay behind this management of demand. We
heard that the sleepover and funded family carer settlements and the new model for
disability support services had changed client and provider behaviour, resulting in cost increases. However, NASC services have saved $8.2 million by examining what services are delivered and to whom; also, some of the cost pressures were less than expected.
We subsequently heard that disability support services are not forecast to be overspent at year end. Some of us are not satisfied with the ministry’s explanation as to what the shortfall was and where the money came from to fill the shortfall.

The bold is mine, as is the shit formatting....

Thanks Rosemary - I think "demand management" was exactly what I overheard. The apparent staff bonuses for doing that was the surprise.

The relevance of all of this to health care is that that same context applies.

The irony of all this penny pinching is that having diseases like this in the community actually cost more than treatment ever does.

There was a particular issue here in whether bending to Gilead's profiteering would have been a good thing, but it remains true that treating people with liver failure or liver cancer is far more expensive than the drugs would be.

Even when people get the tests and find out what the the options are it is still not easy to access help even for the most savvy of us.

No, and people with Hep C learn fast about stigma. Ed Gane and Victoria Oliver are doing to great work in getting diagnosis and treatment out into the community in Auckland – reaching people it's hard to get to come to hospital.

The apparent staff bonuses for doing that was the surprise.

Many, many years ago at a Disability Support Services Consumer Forum I asked whether NASCs received a bonus from the Ministry if they came under budget for the year.

Went down like a cup of cold sick with the Ministry staff up the front...round of applause from the assembled disaffected.

(They don't have these regional Consumer Forums anymore...can't think why.)

Seriously though...there must be some kind of financial incentive.

It's simply not human to keep denying folk salvation when its within reach.

Brilliant, thanks Russell. And thank you re those stuff comments. I submitted one to point out what was missing in 'where to get help', or the article, ( FixhepC, Or NZHF) as you have. That didn't get past the moderator, whereas the immoderate does.
It is not penny pinching by Pharmac, it is simply impossible, the cost is too unreasonable.
And yes to this:
'There was a particular issue here in whether bending to Gilead's profiteering would have been a good thing',
Scroll down this article and check out the graphic of Gilead's profit escalating as deaths occur: http://www.globaljustice.org.uk/blog/2017/may/10/how-many-hepatitis-c-deaths-does-it-take-make-billion-dollars-drug-company

Thanks for Lost In Space Russ. It's great that Marty is reprising some of the old classics. Enjoyed hearing Satin Doll again , 30+years later. He looks great!!

That didn’t get past the moderator, whereas the immoderate does.

I've found it doesn't pay to include links - even though they back up and supports cogent points and add knowledge to a 'discussion' .
So best to allude to things or give clear search pointers - any Stuff story will pass muster, and lately I've had luck with getting Government links allowed through.
If you have multiple points to make it's better to make multiple comments, as one contentious (for whatever reason) point among many others will see the rest thrown out as well.
Save your comments before posting and try them again later - another moderator my allow them or the discussion (if it can often be called that) may move in such a way as to make them more palatable.
I often flag as inappropriate comments that bully or belittle, and will go further up the foodchain if necessary.

That didn’t get past the moderator, whereas the immoderate does.

I've found it doesn't pay to include links - even though they back up and supports cogent points and add knowledge to a 'discussion' .

Having spent a fair bit of the past 15 years moderating comments, I must say that's piss-poor moderation. Keep the hate speech but dump informed comments? Really? No wonder they have problems with their forums.

Thanks for Lost In Space Russ. It’s great that Marty is reprising some of the old classics. Enjoyed hearing Satin Doll again , 30+years later. He looks great!!

He sure does. And it was cool of him to give you a shout-out too :-)

Thanks for Lost In Space Russ.
It's great that Marty is reprising some of the old classics.

I think I recognise that polka dot shirt from back then, too...
...I've still got the 'Russian' one you brought back from London.
:- )

I’ve still got the ‘Russian’ one you brought back from London

You've got me there Ian

I first wrote to the SDHB, following an email exchange, on 14 July 2016, to point out it was 9 months since the unit was aware of the generic option. First trials had been published; asking that they at least inform if not support those who don't qualify:
"In that 9 months, in my opinion, people whose condition has deteriorated to the level they now qualify for Harvoni, may not have if they had been offered timely advice. Some of those people will die because they were not. From now on, everybody who worsens has lost the chance to stop the virus sooner"
Other than on Morning Report last Friday, when Dr Millar said it had always been, of course, their practice to tell people their options, I have never heard, or been told any different to my final exchange Nov17 2016:
"There has been no change in the position taken by the SMOs in the Gastroenterology service employed by SDHB.
We will continue to support efforts to widen access to DAAs through standard NZ regulatory channels. I understand this has already been outlined to you in previous correspondence".

Hi Jason,

it's not exactly pennies we're talking about.

With 20,000 patients not having medication coverage and a list price of over $100,000 NZD it adds up to 200 billion pennies. With a penny being ~2 mm thick if we stacked them all up the stack would reach 400,000 km - literally all the way to the moon.

$2 billion is quite a chunk of change.

With 20,000 patients not having medication coverage and a list price of over $100,000 NZD it adds up to 200 billion pennies.

Pennies =/= dollars even if pennies were NZ currency, which they aren't.

I get that the patented version of the drug is expensive, but as Russell has detailed in previous columns, we have a looming public health crisis of potentially 20,000 people with acute liver failure, which is a disaster in both human and monetary terms.

I'm delighted that generic-buying solutions are being found. And I hope all that human potential of people suffering with Hep C can be recovered. Such fantastic news for Martin Phillips and his family and friends and fans. Each person successfully treated is a life given back.

Denying people information about their treatment options breaches NZ's Code of Health and Disability Consumers' Rights as well as personal medical practitioner ethical codes subject to sanction.

No idea how Southern DHB thinks that does not apply to them.

That is exactly what I spelled out for them, quoting both of those, in my letter of July 16. Got slapped down.

I’m delighted that generic-buying solutions are being found. And I hope all that human potential of people suffering with Hep C can be recovered.

This is such a big thing. All those people with a chronic illness who could be working and contributing.

Seems appropriate to leave this here:
http://www.radionz.co.nz/news/national/330943/msd-rush-caused-privacy-breach-critics

Interesting. Who signed the reply?

Social Development Minister Anne Tolley […] said in a statement the criticism outlined in the report was disappointing and avoidable.
The ministry’s chief executive would now lead an employment investigation, Mrs Tolley said

Playing it pretty much exactly as was predicted back when Sacha first raised the prospect of an investigation. Way to miss the point there: sorry, what? The criticism was “disappointing and avoidable”!? Not the fuckup of a process (underresourced, poorly defined, rushed) that led to that criticism? And why should we trust any investigation headed by the managers who drove the process?

Uh, whoops, we actually had a thread open for that topic.

For patients who need to be treated with Sofosbuvir in addition to Pharmac supplied Maviret, I recommend they access it through the Australian FixHepC site. They supply Hep C licensed generics for very affordable prices.