Please sign the petitions

May 4, 2019

Eight health groups are combining to seek more funding for Pharmac to fund drugs that extend lives or improve their quality.

They’re urging people to sign their petitions:

A range of health groups are calling on members of the public to sign petitions that will presented to Parliament on 7 May. They call for medicines to be funded that will help New Zealanders live longer, healthier lives and reduce extreme suffering.

“We need kiwis to support other kiwis who often can’t stand up for themselves because they are too unwell,” Breast Cancer Aotearoa Coalition committee member Louise Malone says.

“This is a real opportunity for people to say to the Government that the time for proper funding of medicines is now.”

The groups will march to Parliament, starting at Wellington Library then to PHARMAC for a candle lighting ceremony in commemoration of those who have gone before. Once they reach Parliament, the petitions will be accepted by MPs.

The petitions call for dramatically improved medicines funding to provide the care that people with a range of serious illnesses need.

“The medicines are desperately needed,” Lung Foundation New Zealand CEO Philip Hope says.

“If everyone knew the suffering that people go through with these diseases, most wouldn’t hesitate to sign the petitions.”

The groups are Lung Foundation New Zealand, Breast Cancer Aotearoa Coalition, Ovarian Cancer New Zealand, Myeloma New Zealand, Pompe New Zealand and Chronic Lymphocytic Leukaemia Advocates New Zealand.

 

No photo description available.

Image may contain: text

Among the charities involved is Ovarian Cancer New Zealand.

Each year in New Zealand 350 women are diagnosed and 220 die from ovarian cancer. It’s the second biggest contributor to women’s cancer deaths from female specific cancers. Approximately one in 70 women will develop it in their lifetime.

New Zealand women with the disease don’t get access to the same drugs that are funded in other countries.

This is the motivation for a petition asking  Pharmac to fund Lynparza and Avastin for ovarian cancer, and also urging the Minister of Health to provide additional funding to Pharmac to enable the drugs to be subsidised.

Each year [in New Zealand] 350 women are diagnosed and 220 die from ovarian cancer. It’s the second biggest contributor to women’s cancer deaths from female specific cancers. In women with ovarian cancer linked to the BRCA gene, Lynparza can extend progression free survival by about one year and is reimbursed by Governments in Australia, UK, and most OECD countries. In women with advanced disease Avastin extends PFS by 6 months. . . 

Ovarian cancer is often diagnosed late because the symptoms aren’t recognised.

Every woman, and those who care about them, should familiarise themselves with the symptoms.

Potential symptoms of ovarian cancer include:

  • Bloating
  • Abdominal/back/pelvic pain
  • Eating less and feeling fuller
  • Needing to pee more often or urgently
  • Bowel changes
  • Fatigue
  • Indigestion
  • Abnormal vaginal bleeding
  • Painful intercause 
  • Unintentional weight loss

If women experience these for two weeks or longer they should tell their doctor. Ovarian cancer is detected with a blood test (CA-125) and ultrasound. 

The petition for better funding to treat ovarian cancer is here.

The other petitions are:

Breast cancer

Chronic lymphocytic leukemia

Lung cancer and Non small cell lung cancer

Myeloma

Multiple myeloma

Pompe disease

These organisations have recognised that insufficient money it the major reason Pharmac doesn’t fund treatments available in other countries which is why they’re asking that more is allocated.


Young Farmers getting plastered

September 29, 2010

Young Farmers are getting plastered for a good cause.

They’re fronting up to support A Rural Women New Zealand’s initiative to highlight the need for women of all ages to be alert to any changes in their breasts.

 Let’s Get Plastered for Breast Cancer  is a nationwide event involves women, and some men, creating plaster sculptures of their torsos, which are going on display in galleries and cafes all over the country for Breast Cancer Awareness month in October.

Rural Women New Zealand will donate profits from the sale of the plaster kits to the NZ Breast Cancer Foundation.

RWNZ National President Liz Evans says “We are delighted that the Wellington Young Farmers are supporting this campaign.  By creating personal sculptures, we hope these young women will be reminded to take a hands-on approach to regularly monitoring their breasts.”

Wellington Young Farmers Chairman Erica van Reenen says “We had great fun making our casts and it certainly broke down the barriers, as well as reinforcing the serious message behind this campaign.”

And the fun doesn’t stop there.  The women will be displaying their decorated breast sculptures at the Wellington Young Farmers’ Ball on 16 October, where they’ll be up for auction.

“As well as donating money to the NZ Breast Cancer Foundation through Rural Women New Zealand, we plan to raise extra funds from the auction for rural people affected by the Canterbury earthquake,” says Ms van Reenen.

You can find details on how to get a plaster kit and tickets to the ball at Rural Women NZ on the link above.


Too many groups too little for causes

October 8, 2008

Last month was blue for prostate awareness, and orange for atrthritis, this month it’s pink for breast cancer, it was Hospice Appeal last Friday and there was an envelope in yesterday’s mail for Plunket.

Almost every time I go to town there’s someone selling raffles outside the supermarket and hardly a week goes by that there isn’t someone on the street or the phone asking for money for a very worthy cause.

The Manawatu Standard  wonders if it’s all getting too much:

Every week is another awareness week – if not for cancer, for some other health, disability or learning difficulty group.

If you have a conscience, your pay packet is constantly clobbered to help these genuinely good causes that need our support.

What worries me is that there are so many support groups in New Zealand now, all doing pretty much the same thing for different-flavoured causes. All with administrators organising volunteers, many with PR companies helping produce professional media kits, many with little widgets for the public to buy, to wear, to keep, to raise awareness to raise funds to help. Every day brings another awareness day, week, month, year.

Nobody’s going to like this and nobody’s going to have the stomach to do it. Feelings will be hurt. But honestly, what’s needed isn’t so much a rosy glow of pink lights over Palmerston North as a strong searchlight review of the whole fundraising industry, to get rid of duplication and the constant blaring barrage to give to every cause going.

There’s also a compelling argument that support, treatment and research shouldn’t depend on donations from the generous. What are our taxes for, if not to look after New Zealanders?

There will always be a place, and a need, for private philanthropy but I do wonder if a little judicious rationalisation of the many worthy groups might mean lower overheads with less duplication which would require less time, energy and money spent on the organisations and leave more for the causes.


Herceptin, health & politics

August 8, 2008

Was Pharmac’s decision to not fund 12 month courses of herceptin based on clinical evidence or financial necessity?

Women’s Health Action Trust director Jo Fitzpatrick accepts it was clinical: 

[she] “reluctantly” spoke out yesterday in support of the decision, “because of concern at the high level of public misunderstanding about the drug and its effects”.

“Herceptin is promoted as the magic bullet for early breast cancer treatment,” she said. “People used to think – and many still do – that Her-2 positive breast cancer can and will be cured by Herceptin.

“We wish that was true but the evidence just isn’t there and people need to know that. At its best, 87 women in every 100 taking Herceptin get no benefit from the drug at all and may be harmed by it.”

And:

District health boards’ spokesman Murray Georgel said the lack of convincing evidence for 12-month treatments meant the decision was one “DHBs can understand”.

“In that context, and given the ability of DHBs to improve health through other interventions, it would have been concerning if Pharmac had come to DHBs and asked that the 12-month treatment be funded.”

But:

Other groups were scathing of the decision. Breast Cancer Aotearoa Coalition chairwoman Libby Burgess called it “a cruel blow for women and their families”.

She said the drug was “life-saving”, and Pharmac’s decision was “shameful” and “simply inhumane”.

Comments on my previous post  on the issue are also divided with Ed Snack saying it is important to judge the issue on science not emotion and he points to this link as a starting point. However Macdoctor  evaluates clinical trials and concludes Pharmac’s decision was a budget one.

But then NZ Conservative and several comments at No Minister  back Pharmac.

I am not qualified to argue about the science so I’ll move to the politics and this from TVNZ:

Diane Edwards from Herceptin Heroines says “there’s not a woman in this country that can afford to vote for this government after today’s decision”.

However over at the Hand Mirror Stargazer points out:

… national are saying they will fund the full 12 month course but legally would not be allowed to do so. unless, of course, they change the law to allow political interference in medical decisions.

She is right, Pharmac is independent and there are good reasons why neither the the Minsiter of Health nor the government can intervene. But that will be lost on most people because emotion beats facts in politics. Pharmac is regarded as an arm of government so unpopular decisions from the former will rebound on the latter.

Furthermore, Keeping Stock  points out the only other OECD countries not to fund 12 month courses of the drug are Turkey and Mexico.

As any parent will tell you “nearly everyone else does it” is not a convincing argument. But if most other OECD countries fund the treatment because they can afford to, even if the science is not settled; and we don’t because we can’t afford to then regardless of Pharmac’s independence we are justified in holding the government to account.


%d bloggers like this: