Kindness and priorities

The announcement of development handouts to Māori in the regions coincide with Waitangi celebrations. See Waitangi – inclusion, protest and handouts.

Perhaps there will be a big announcement on cancer drugs for World Cancer Day (which is actually today, 4 February) – but the Government says that it is up to Pharmac (except for when the Government intervenes but they didn’t say that).

1 News: World-leading breast cancer expert calls on Pharmac to make two new breast cancer drugs more affordable

Pressure is mounting on Pharmac to make two new breast cancer drugs more affordable, as a world-leading expert says New Zealand is falling behind other developed countries in its treatment of advanced breast cancer.

Auckland woman Wiki Mullholland has been pushing for better treatment of advanced breast cancer since she was diagnosed in May.

The mother of three is lobbying Pharmac to fund new medicines Ibrance and Kadcyla.

“Advanced breast cancer is all about treatment. We need to know what’s coming next and for me, Ibrance is next,” she said.

“It’s going to cost $7000 a month for me and my family to source that.”

Now, a world authority on terminal breast cancer, oncologist Dr Fatima Cardoso is supporting the cause.

Ms Cardoso said, “The medium survival of patients with this disease in New Zealand is about half of what it is in other developed countries. From those results, it is not good, and it needs clearly to be improved”.

The average survival after a terminal breast cancer diagnosis here is sixteen months.

“It is, for the moment, unfortunately, an incurable disease, but it is treatable and with the correct treatment, people can live for several years with a good quality of life,” she said.

Pharmac says Ibrance and Kadcyla have been recommended for funding, but for a limited group of patients.

A decision is expected by the end of the month.

Calls for Prime Ministerial kindness have been made before.

Newshub (August 2018):  Duncan Garner’s desperate plea to Jacinda Ardern over cancer funding

Duncan Garner has made an emotional appeal to Prime Minister Jacinda Ardern to review Pharmac and prevent unnecessary cancer deaths.

Cancer Society’s Dr Chris Jackson told Newshub New Zealand is lagging behind and the matter needs immediate attention.

“What’s clear is that 2500 New Zealanders died from cancer whose lives could have been saved if they were treated in Australia over the course of the last five years,” he said.

Stuff (December 2018):  Teen pleads for Prime Minister Jacinda Ardern to step in and cut strings to cancer drug funding

The teenage daughter of a Palmerston North woman with advanced breast cancer has written an open letter to the prime minister, pleading for the Government to make medicine more accessible.

Molly Rose Malton Mulholland, 17, is the daughter of Wiki Mulholland, 40, who has metastatic breast cancer, which is the most advanced stage of breast cancer. It has spread to her bones.

Molly decided to write an open letter to Jacinda Ardern, begging for Government intervention after the cancer treatments subcommittee from Pharmac put forward their recommendations for the funding applications for two life-prolonging drugs, Ibrance and Kadcyla.

The subcommittee recommended the drugs be funded, but with strings attached. Ibrance would not be funded for women who had already received hormonal treatment, and Kadcyla could be accessed only by those who hadn’t been treated with another drug, Perjeta.

The Government has stepped in on regional Māori development funding, so perhaps they could do similar on drug funding. Or, where Pharmac makes the decisions, on Pharmac funding.

Labour health spokesperson Annette King in 2015: Pharmac’s underfunding is costing Kiwi lives

It is easy to point the finger at “political interference” when it comes to the tough decisions Pharmac is increasingly having to make around funding life-saving healthcare for Kiwis.

But nothing screams ‘political interference’ like the underfunding of our most successful health model.

Allowing Pharmac to fund life-saving cancer treatments in the short term – as countries overseas currently do – will offer hope without the agency being tied to a long-term funding programme.

Labour is proposing a pool of money be set aside to fund these innovative medicines for a short period, say two years, where there is little alternative treatment available. Pharmac’s model would remain untouched, New Zealanders would be able to access new drugs as those in Australia and Great Britain currently do, and money would go where it matters most – into saving Kiwi lives.

I get it that delivering for Māori is important to Ardern and her Government.  Last year at Waitangi Ardern said “When we return in one year, in three years, I ask you to ask us what we have done for you”.

But people suffering from cancer may nor be alive in three years, or one year.

Where’s the kindness and empathy for people who are sick and dying?

 

Dying man and his wife prompt Health Minister to promise better cancer care, sometime

A dying man from Southland, Blair Vining, and his wife Melissa, put Health Minister David Clark on the spot at  the ‘Cancer Care at a Crossroads Conference’ in Wellington yesterday. Clark has promised better cancer care.

Providing sufficient health care is always going to be a challenge, but regional differences can be quite unfair on some people diagnosed with cancer.

Stuff: Southland man Blair Vining calls government to account over ‘lack of cancer action plan’

Blair Vining says if it was not for his persistent wife Melissa he would probably be dead.

The Southlander said it was the stark reality of his situation and was why he was calling the New Zealand government to account over not having a cancer action in place.

Vining was last year diagnosed with terminal cancer and was given six to eight weeks to live without any treatment.

The catch though was that he was advised it would take eight weeks to get his first oncologist appointment.

That is awful.

Vining did not have eight weeks to wait.

Instead his wife Melissa searched the private sector in a desperate attempt to speed up the process.

He was able to see Dr Chris Jackson in Christchurch and get the treatment process started within three weeks.

“It took 19 phone calls and a very persistent wife. If it wasn’t for her, I would have been in the public sector and waiting for eight weeks,” Vining said.

As part of the public health sector he said he overheard doctors talking outside his room about his inoperable status and he also had an infected IV line as procedure wasn’t followed through.

He also said at one point he had a six-hour journey for urgent treatment because no-one was available at the Southern District Health Board.

One would hope that people diagnosed with terminal cancer wouldn’t effectively be condemned to die for lack of health care.

At least in this case one dying person and their wife may be able to make a difference for others – if Health Minister Clark follows through on his assurances.

Stuff:  Health Minister David Clark commits to improving cancer treatment for all Kiwis

 

Health Minister David Clark has vowed to get the ball rolling a national cancer plan to improve Kiwis’ access to fair and consistent cancer treatment, regardless of where they live.

Speaking at the ‘Cancer Care at a Crossroads Conference’ in Wellington, Clark acknowledged more needed to be done in the sector and that he, along with the Ministry of Health, would be working to establish a plan.

Clark had the hard task of following a talk by Blair Vining, a Southland father dying of bowel cancer, and his wife Melissa, who took the minister to task.

“You have failed Blair, you have failed me and my children, and you have failed many other New Zealanders by not having a cancer plan,” Melissa said to Clark and the gathered crowd of cancer experts.

It looks like he was deliberately put on the spot by conference organisers, but at least Clark was there to listen.

“I am personally concerned about the growing inequalities [to access health care] and that is the main reason I chose to get involved in politics.”

“The existing cancer arrangements have lapsed and it’s something that I’ve been aware of since I first became minister and that’s why we’re moving towards … a national system.

“We are committing to an action plan and one of the good things that I think is going to come out of this conference is the early steps of pulling that together,” Clark said.

There are positive signs that Clark understands the problem and will do something about it.

But there are also mixed messages from Clark about whether he sees it as urgent or not.

He said “The existing cancer arrangements have lapsed and it’s something that I’ve been aware of since I first became minister” but “one of the good things that I think is going to come out of this conference is the early steps of pulling that together” is worrying – after 15 months as minister and being aware of the issue he now says they are at “early steps of pulling that together”.

He said timelines were up in the air at this stage, but he was committed to seeing change as soon as possible.

When someone is diagnosed with cancer and is told he may die within two months, and is unable to see a public health specialist for two months, then timelines being ‘up in the air’ is not a very solid assurance.

Clark often comes across as an earnest do-gooder who struggles with the doing.

Health ministers have to try to manage many priorities, but providing health care for people before they die should be close to the top of the list.  I hope Clark takes urgent action over this.

Solidarity with Alex Pirie

From barriejsargeant:


A year ago AWSM conducted an interview with social activist Alex Pirie:

https://www.anarkismo.net/article/30707?search_text=alex+pirie
https://www.anarkismo.net/article/30753?search_text=alex+pirie

Since that interview we have worked closely alongside Alex on various issues such as transgender rights, the nurses struggle and in generally advancing conditions for workers in Aotearoa and elsewhere. He has consistently shown himself to be a staunch advocate for those suffering at the bottom of this economic and political system. We have recently learned that Alex himself is now suffering…our friend has been diagnosed with advanced cancer!

AWSM sends its solidarity and love to Alex and his wife Karly at this time.

For those wishing to give back something to this fighter for social justice in his time of need, please contribute generously to the site which has been established to help fund medical and other costs:

https://givealittle.co.nz/cause/hope-for-alex/donations

AN INJURY TO ONE IS AN INJURY TO ALL

http://awsm.nz/2018/11/08/solidarity-with-alex/

Living in hope of new drugs

Serious, life threatening and life ending illnesses have always been a problem, sometimes at epidemic and even pandemic proportions.

Tuberculosis has been around since at least neolithic times. The Great White Plague epidemic started in the 17th century and lasted about 200 years. The industrial revolution enabled it.  Both my grandfather’s brothers died of TB aged 19.

The 1918 flu pandemic infected about half a billion people around the world and killed 50-100 million, 3-5% of the world population. This followed the massive loss of life during World War 1 – many men who survived the horrors of the trenches died of the flu, or spread it around the world as they returned to their home countries.

TB and the flu haven’t gone away completely but are currently less deadly in developed countries like New Zealand.

Now our biggest killers are heart disease and the various types of cancer that have now been identified.

Modern medicine has made avoidance and survival much more achievable (but something gets us all in the end).

One significant change is hope – hope that medical advances will prevent or cure diseases.

This must be an difficult for those who are suffering, especially those who know there are new drugs available elsewhere but are unavailable or unaffordable.

Others are helped by currently available life extending drugs, but live in hope of something better becoming available.

I can barely imagine what it must be like living in this situation, but that’s the situation  Dunedin’s deputy mayor is currently in.

ODT: Staynes making the most of remission

Dunedin’s deputy mayor is readying himself for one last term on the council, after treatment halted the spread of his prostate cancer.

While Cr Chris Staynes’ cancer has not gone away, he said yesterday it was in “a controlled state” that meant he was ready to continue in his role for another three years, if the vote went his way in October.

In April last year Cr Staynes (65) was diagnosed with a particularly aggressive form of prostate cancer.

Tests later confirmed the cancer had spread to his bones at multiple sites, meaning his long-term prognosis appeared bleak.

But yesterday he said after chemotherapy that was “not so good”, and medication, his health was “at the moment good”.

His specialist had told him yesterday his prostate-specific antigen result, which tested for an enzyme in the blood produced exclusively by prostate cells, was zero.

That meant the cancer was neither spreading or growing.

The medication he was taking to get that result, however, would “work for a while; at some point, it will cease working”.

Once that happened, there was another drug that would hold the cancer, but for a shorter time, and another, more recently funded, that “could buy you a bit more time, but shorter again”.

“What you hope is they last as long as they possibly can.”If he got five years from the drug he was on, “that’s a great outcome”, he said.

The longer he lived, the longer he was likely to live because of the research that was going on.

Sooner or later, new drugs would come on the market.

I really feel for him and others in similar situations (as much as is possible without facing it myself), living in hope of life saving or better life extending drugs or treatments.

I must admit that when one gets on a bit, and one notices more people of a similar age falling victim to disease and death, one tends to ponder things like this a lot more.

One thing it reminds me to do is be very thankful I can still enjoy life and good health. Neither of my grandfathers lived as long as I have survived, but I live in much better times as far as medicines and wares are concerned.

Kelly’s cannabis request rejected

Helen Kelly’s oncologist applied to the Ministry of Health to be legally allowed to ease her discomfort as she dies with cannabis related products. This has been rejected, with the MoH asking for more information and claiming the oncologist hasn’t provided it.

This has been a rapidly evolving story that I haven’t had time to cover properly.

Some links to information as the story unfolds:

Stuff: Former union boss given two months to live – nearly a year ago

“But it doesn’t cure me, it just gives me time … I don’t know what the prognosis is now, but it’s still death and it’s still months.”

Kelly continues to source cannabis illegally while she awaits the outcome of her application to the Ministry of Health for medicinal cannabis.

Currently her application has been deferred while the ministry waits for more information from her oncologist.

But Kelly says she’s been asked to provide things she doesn’t have access to, and the ministry should be stepping up and helping source information.

“Why doesn’t the Ministry of Health have a list, which they’re satisfied meets their criteria? Instead you have all these people Googling away and Skyping American producers trying to work out what they’re saying.

“I’ll try and find the information they want and see whether that goes through and, if it doesn’t, then I don’t know what I’m going to do.”

Kelly’s situation is very sad – she’s dying. And it’s also sad that the Ministry of Health is making it hard for her to obtain what she wants legally.

Russell Brown has a good post at Public Address on developments: Helen Kelly’s letter.

There’s some concerning issues but some possible positives:

The good part is that the criteria for applications like Helen’s can be improved without changing the law. They’re not part of the Medicines Act. I think Peter Dunne needs to ensure,  as minister, that the process is fundamentally improved. Because a process so designed as to frustrate all medical cannabis applications will not prevent the use of cannabis in this way.

In the end, we do need to revisit the law – as the Law Commisison and two Parliamentary select committee inquiries have already said. Palliative care is not the only element of medical cannabis policy. But it’s certainly the place we should start, given the growing use of cannabis this way in defiance of the law. When we fail to do this, we impose risk and stress on desperately ill people and their doctors – and we’re saying we don’t care enough to properly regulate for their safety.

But the situation with Kelly is awful.

No one is going to prosecute Helen Kelly for treating her symptoms with cannabis. But what the system currently says is that it can’t and won’t make that safer for her. We need to do better than this. A lot better.

Surely we can do a lot better.

Brown attributes most of the blame on the National caucus and by implication John Key.

 

Oils are unhealthy now

Another study in the neverending uncertainty about what is healthy or unhealthy to eat says that vegetable oils used for cooking are unhealthy.

Cooking with vegetable oils releases toxic cancer-causing chemicals, say experts

Cooking with vegetable oils releases toxic chemicals linked to cancer and other diseases, according to leading scientists, who are now recommending food be fried in olive oil, coconut oil, butter or even lard.

The results of a series of experiments threaten to turn on its head official advice that oils rich in polyunsaturated fats – such as corn oil and sunflower oil – are better for the health than the saturated fats in animal products.

Scientists found that heating up vegetable oils led to the release of high concentrations of chemicals called aldehydes, which have been linked to illnesses including cancer, heart disease and dementia.

Martin Grootveld, a professor of bioanalytical chemistry and chemical pathology, said his research showed “a typical meal of fish and chips”, fried in vegetable oil, contained as much as 100 to 200 times more toxic aldehydes than the safe daily limit set by the World Health Organisation.

In contrast, heating up butter, olive oil and lard in tests produced much lower levels of aldehydes. Coconut oil produced the lowest levels of the harmful chemicals.

We have had “butter is unhealthy” rammed down our throats for years.

Coconut oil was rated here as the most healthy. Last year the Herald reported:

Coconut oil seen as health hazard

Coconut oil is high in saturated fat and should not be used as regular cooking oil despite being the “trendy thing”, the New Zealand Heart Foundation says.

The foundation commissioned food industry consultant Dr Laurence Eyres to review existing research on coconut oil and its effect on heart health after what it deemed was “widespread misinformation” about the benefits.

Coconut oil had been heavily marketed over recent years as a “super-food” but Eyres said the health claims did not stack up.

“Traditionally, coconut oil hasn’t been recommended because it is extremely high in saturated fat. This advice remains, despite the large number of marketing claims to the contrary,” he said.

Switching to coconut oil was likely to lead to an increase in cholesterol levels and could potentially increase the risk of coronary heart disease, Eyres said.

If we avoided eating everything found in a study to be unhealthy – fats, oils, salt, sugar, processed foods etc there wouldn’t be much left for us to choose from.

A lack of variety is probably bad for us as well.

The stress and worry about whether what we are eating might kill us might end up killing us.

The best dietary advice seems to be moderation in everything. Bacause as the saying goes, if you don’t eat you don’t shit. And if you donm’t shit you die.

Gareth Jones, dying and cannabis oil

Gareth Jones is dying of cancer. He was told he had only a few months to live (last October). He producing his own cannabis oil and self medicating with it. He says it helps his pain and thinks it may have extended his life. But it’s illegal.

3-D (3 News): Cancer patient says NZ needs law change on medical cannabis

His pain is substantial. He’s doing his best to manage it with pharmaceutical drugs administered through this “pain patch”, but he’s adamant the cannabis oil is playing a lead role in fighting the pain and improving his quality of life.

He says the benefits are sleeping, pain relief and appetite.

Mr Jones also believes his homemade medicine is extending his life. Last October he was told he had just three months to live.

“The way the oncologist was talking it was more like I’d have a month of good and maybe a month or two after that, maybe three months tops, and he was talking six months as the extreme side of it and I’m over that now,” says Mr Jones.

Regardless of whether the cannabis oil is providing any real medical benefit – even if it is just having a placebo effect – surely there is nothing wrong with a dying man from using it. It’s hard to see what harm can be done by it.

Without fail, every night Mr Jones takes two capsules – a measured combination of his home-cooked cannabis oil mixed with coconut oil.

“Yes [I get high], but that’s why I take it at night, so I sleep off the effects, so I don’t really feel anything. So that’s why I take a good dose at night then wake up in the morning and it’s gone and I carry on the day like normal.”

He needn’t get high – if the law allowed him to use cannabis oil that was low in intoxicants. Cannabis low in THC can be grown although it isn’t readily available in New Zealand.

But so what if he gets high?

What makes it even more frustrating for Mr Jones is seeing the recent legalisation of medical cannabis across the United States; in many states what he’s doing is totally legal.

“It’s pretty average really. For trying to extend my life and spend more time with my family I get made a criminal for it.

“Something needs to change in New Zealand. Most other countries have woken up to it. And using it for medicinal use anyway, they’ve been doing it for a long time with good results now, so it’s about time New Zealand finally caught up.”

Overseas, studies have found cannabis works well on chronic pain, especially for people like Mr Jones with late-stage cancers.

But this family can’t wait for New Zealand to catch on. Mr Jones is determined to see his daughter turn three. If that means breaking the law, then that’s what he’ll do.

“I guess I’ll just keep taking my nightly pills and go from there I guess. I don’t really have back-up plans now.

I suppose there’s a risk that now Gareth has gone public the police could arrest him. What then – put him in a prison hospital and does him up on morphine?

Morphine is often legally provided for pain relief and that is highly intoxicating. It seems nuts that a milder and far safer intoxicant can’t be legally used, especially as it might provide other medical benefits as well.

The Ministry of Health told 3D as part of a wider review of the Medicines Act it’s looking into the legislation around the use of controlled drugs, including cannabis. The results of the review will be released next year.

It seems likely Gareth will be dead by next year. Because our Government is paranoid about sick and dying people getting high using cannabis – already one of the most widely used drugs in New Zealand.