Breast cancer patient Jyoti Bhagat with her son Shikhar and husband Praveen. Bhagat's best chance for more time with her family is a drug called Kadcyla, which comes at a cost of $100,000.

Jyoti Baghat is going to die. Whether she dies in the next month, or within 12 months, depends on whether she can raise the $100,000 needed for a new drug to buy her more time.

It won't save her life, and it won't drastically improve the quality of the life she has left.

But the Auckland mother-of-one is refusing to accept that a cost-benefit analysis of the worth of her life is the reason she's unable to spend a few extra precious months with her family.

It's an equation national drug-buyer Pharmac has to run every day, and it's not always fair - for either party.

Stories like Bhagat's are becoming increasingly common. Overseas, the debate over the exorbitant prices of life-saving medicine has reached fever-pitch as drug companies refuse to justify their costs, and terminal patients are left to mount public campaigns to gain funds and apply public pressure.

In Baghat's instance, the drug is Kadcyla, and it is used to treat certain types of breast cancer, that have spread to other parts of the body. In the medical world, that's known as metastatic breast cancer; to everyone else, it means terminal.

Baghat realises it's not a cure, but she's been told it's a "wonder-drug" that could potentially contain it, by clearing the way for surgical removal of a 15cm mass, which would give her the best chance of a longer life.

RELATED:

* Big Pharma has the upper hand 'and they know it'

Baghat's battle with cancer began in 2008, when she was diagnosed with inflammatory breast cancer, a rare and aggressive form of the disease.

"My right breast had become pink. Since I bruise very easily and was in the process of building a new garden, I thought it might be from using long-handled implements."

At the time of diagnosis, Baghat's cancer was already 8cm wide and had been forming over the course of a full year.

She was started on chemotherapy right away, but was told if she didn't respond well she would have little more than three months to live. At first the cancer shrunk - but then it returned with vengeance. With anouther round of radiotherapy and treatment, it went into remission in 2010.

But Baghat's cancer was not behaving by the textbook, and by December 2011 it was active again.

She has been on numerous rounds of chemo since, as well as a course of Herceptin; all aimed at staving off the inevitable. But her doctor has told her she can't remain on chemotherapy indefinitely.

Along the way, Bhagat lost her job at Statistics New Zealand. She initially said no to Kadcyla when her oncologist recommended it, because she said the financial burden on her family was not worth it. At about $100,000 a pop, there aren't many who can afford it if the Government can't.

And that's what's got industry professionals concerned.

DRUGS AND MONEY

Bhagat is fighting a battle symptomatic of the inordinate increase in the price of life, that's coming to a head in Europe and the United States.

According to the World Health Organisation, medicines account for over half of total health expenditures in many countries, and they are often unavailable and unaffordable to patients who need them.

Up to 90 per cent of the population in developing countries still buys medicines through out-of-pocket payments, and are often exposed to the risk of catastrophic expenditure.

Yet more medicines than ever before - across a range of ailments - are being developed, and patients are rightly questioning why each new drug appears massively more expensive than the last.

Often, a new medication has been tinkered with to the extent it's technically a new product, but barely. That's not necessarily bad, as Pharmac chief executive Steffan Crausaz points out; it depends on the treatment it relates to.

Thalidomide is a very old and infamous drug, which is still used to treat multiple myeloma - a form of blood cancer. Crausaz says a newer treatment, Lenalidomide, is pretty much a derivative of Thalidomide with some additional advantages for patients.

"That's really quite an important aspect in terms of what Pharmac is looking for, in terms of how we can meet needs that aren't met by Thalidomide."

The list price of Lenalidomide, though, is2600 per cent higher than the 2002 version of the drug. It's no game-changer, it's no cure, it's just different.

By using a confidential rebate system, Pharmac demands the pharmaceutical companies makes a payment back to Pharmac, which is distributed back to district health boards. "Over the last three years, the total amount of confidential rebates we've obtained back from companies has increased three-and-a-half times, Crausaz says. "That's a reflection of the fact that we're generally seeing a lot of international commentary about an increase in international asking prices for new medicines generally."

The operating budget for Pharmac last year was $795 million, with a total spend of about $150 million more than that. The rebates are what brings Pharmac back under budget.

Out of that budget, Pharmac must fund about 16,500 different drugs, technologies and medical devices.

HEP C AND BREAST CANCER

Debate is raging overseas, and is starting to reach New Zealand shores over the cost of a drug called Sovaldi. The drug has the potential to cure Hepatitis C and a funding application for the drug has been registered with Pharmac.

It's also known as the "$1000 pill". A general course of treatment (12 weeks' worth) costs up to $239,000 per patient, which is generally a one-off cost. There are 150,000 people living with Hepatitis C in New Zealand. To fund that drug for all of them, it would cost up to $15 billion - or $1 billion more than NewZealand's entire health budget.

Pharmac's unique way of creating competition, where there essentially is none, allows New Zealand DHBs to budget exactly for medicines, without any surprises.

But Breast Cancer Aotearoa Coalition (BCAC) chair Libby Burgess says Pharmac doesn't try hard enough. "Out of 20 OECD countries, we are 19th in terms of access to innovative medicines. We get 27 per cent of those, and the average OECD country gets around 55 per cent. And we're 19th in speed to funding, after Medsafe registers a drug. In the OECD it's 320 days, in New Zealand it's 579."

A recent study showed of the 3000 women who were diagnosed with breast cancer every year, 120 deaths occured that potentially need not have happened.

Burgess said that was at least in part, due to Pharmac's refusal to fund certain drugs.

The Compare report she cited was commissioned by Medicines Australia, a representative body for more than 50 different Pharmaceutical companies including Roche, Janssen, and AstraZenica.

Burgess was instrumental in gaining funding for Herceptin, through a very public campaign. The drug is largely considered a major success story, and offers breast cancer sufferers a lifeline by increasing the length of time until the cancer progresses and increasing life-expectancy. BCAC is now campaigning for Kadcyla.

But Burgess rejects any notion that BCAC is aligned with the drug companies. "That was a completely unjustified criticism that was laid on us when we were lobbying for Herceptin funding. It was completely wrong and a totally unfair attempt to discredit us. The only thing we have ever had from pharmaceutical companies is information, and we're not stupid actually."

"The one that has the power to change things is the Government".

EXPLOITING THE ILL

Last month, Pharmac announced the funding of abiraterone for prostate cancer.

Abiraterone, known as Zytiga, was at the centre of a PR blitz last year. Among its many outspoken proponents was veteran lawyer Sir Peter Williams, QC.

At the time Sir Peter was taking the drug in 2013, it was new and still unregistered. "It was the best Christmas present," he told the Herald on Sunday at the time. "It's very pleasing. I am feeling a lot stronger and I have more energy."

The drug cost $5000 a month but Sir Peter said he was only asked to pay $2500 a month. The implicit quid pro quo? He later spoke in the media and at the drug company Janssen-Johnson & Johnson conference about his success story.

The Sunday Star Times revealed that global drug giant Janssen Pharmaceuticals (an offshoot of Johnson & Johnson) had teamed up with the Prostate Cancer Foundation, a PR firm, and terminally ill men in an attempt to persuade the Government to fund the $60,000-a-year drug.

The PR agency's cynical pitch set up a health funding battle between men and women, claiming breast cancer sufferers received "gold standard" treatment but men with prostate cancer were "sent home to die".

Crausaz is reluctant to criticise the practices of Big Pharma, in recruiting terminal patients to apply pressure for public funding. He says it's not uncommon, and their interests often do align.

"We're never in a position to be able to fund everything, but what we're here to do is listen to the voice of patients, understand what the needs are and the impact on their families and those factors, as well as all the other relevant points before we make a decision."

Herein lies the problem.

Should the government heed the highly-emotive and self-serving campaigns of major PR companies, who says it's a "crime" for drug-buying agency Pharmac to deny terminally ill people treatment? Or should the government, as an example, use that money to further fund its rheumatic fever prevention campaign, and save potentially thousands of vulnerable children from the complications of rheumatic heart disease?

Neither the terminally-ill patients nor the charities backing them are doing nothing wrong.

They need money and support to effectively campaign on behalf of other patients. And although Pharmac aims to look at each funding application objectively, that patient voice is an important factor in deciding where the greatest need is.

But should those links with pharmaceutical companies be more transparent?

A patient's main objective is for a longer and better life, but in the cut-throat world of Big Pharma the drug companies' main aim is to increase profit.

Melanoma NZ chief executive Linda Flay acknowledges there are cases where patient advocacy groups and drug companies team up. "We've seen it with other drugs, not only in New Zealand ... but the patient voice speaks volumes really, because it's personal, it's about what this means to them and their families, and I think that's something that other organisations are perhaps able to put across.

"This is really not about a crusade for Melanoma NZ. This is a crusade to get a drug funded for advanced melanoma patients. We're here to support that process."

When people are mortgaging their homes for the medication, the Government needed to take notice.

Melanoma NZ, at least, is transparent about the sponsorship support it receives from drug company Roche and major PR/lobbying firm Baldwin Boyle, with both listed as sponsors on the Melanoma NZ website site. And in a coordinated campaign, Melanoma NZ and drug company Merck Sharp and Dohme made simultaneous applications to Medsafe for registration of Pembrolizumab in New Zealand last week.

The press release says the new melanoma treatment "is being hailed as the end of painful chemotherapy and radiotherapy".

Simon Craigie is fronting that campaign. "," he says.

Using Pembrolizumab, his tumour shrunk by two thirds in three months. If the drug is cleared for use by Medsafe, applications will be submitted to Pharmac to consider funding - and the PR campaign for that funding starts now.

THE HUMAN EQUATION

So where does that leave patients like Baghat?

In the case of Kadcyla, Swiss pharmaceutical giant Roche is selling the drug for about $100,000 but is prepared to wipe up to $20,000 for eligible patients - Baghat is one. She now has to raise only around $80,000.

Roche NZ general manager Lance Baldo says: "If she did incredibly well, which is what we hope for all patients, and lived for 18 months or two years, her costs would still be $80,000."

So why not just price it $20,000 cheaper? "The cost of the drug is not necessarily based on the cost of development for that individual therapy, because we have to take into account not just the cost of the success, but also the cost of the failures that we encounter as we bring this drug to market.

"We try to price the drugs consistently on a world-wide basis."

The company expects the drug to be funded within Australia in the next couple of months.

Baldo insists there is no shadowy PR campaign for public funding for Kadcyla - indeed, Roche has not lodged a funding applicaiton at all. "The barriers and the hurdles in New Zealand are much higher than in most of the developed world or other OECD countries.

"We do of course try to encourage patients that are vocal that if they feel there are drugs that they can access and should access they should, but in the case of Kadcyla, there have been no tactics or campaigns or anything like that.

"We truly believe that Kadcyla would bring great benefit to patients with breast cancer here in New Zealand, and I do believe that we'd be able to find a price that would be suitable for the New Zealand market."

Bhagat appears torn over whether her fight is worth it.

"I do think it is much too expensive - unreasonably expensive. My husband and my family offered to take a loan and I said 'if you take a loan it's going to be putting you under financial risk'.

"But I think if it's a question of life and death, it should be more easily accessible."

She is preparing herself for either eventuality.

"Tomorrow, if I die, I will go into oblivion, but families are affected also ... we've been married 37 years, and tomorrow if I'm not there suddenly, his frustration would be not that I'm gone, but that he could not give me the best treatment that could have helped."

* To donate to Jyoti Bhagat's treatment visit www.givealittle.co.nz/cause/helpsavejo

FOLLOW THE MONEY

SOLIRIS: Andrea Murphy who suffers from PNH, an extremely rare blood and immune system disorder, was the face of an expensive "miracle" drug. Soliris costs $500,000 a year for each suffererer - according to Forbes, it's the world's most expensive drug. Viva, a Sydney public relations firm that represents billion-dollar multinational Alexion Pharmaceuticals, fronted up Murphy and seven other PNH sufferers to the media in a tear-jerking campaign to persuade Pharmac to pick up the extraordinary pricetag.

ZYTIGA: Respected lawyer Peter Williams, QC, went public to tell how he had rebounded from a near-death brush with prostate cancer since taking a new, unregistered drug, Zytiga. He called on the Government to fund the $60,000-a-year drug for cancer sufferers who couldn't otherwise afford it. But the Sunday Star-Times revealedAndrea Brady, a PR consultant for drug firm Janssen Pharmaceuticals, was plying her trade for the Prostate Cancer Foundation claiming breast cancer sufferers got "gold standard" treatment but men with prostate cancer were "sent home to die". Despite Zytiga, Williams' cancer has returned and the Governor-General travelled to Auckland last month to knight him, amid family fears that he might not otherwise live long enough for his investiture.

PEMBROLIZUMAB: This week, Simon Craigie tearfully told the TV cameras how his melanoma tumour had shrunk by two thirds in that three months, thanks to a new drug, Pembrolizumab. The following day, Melanoma NZ and drug firm Merck Sharp and Dohme announced coordinated applications for Medsafe approval, followed by an application to Pharmac for public funding. Last year, Pharmac declined a request to fund ipilimumab, an earlier immunotherapy for advanced melanoma, partly because of the cost. In the US, pembrolizumab costs about NZ$200,000 per patient.

KADCYLA: Beast cancer sufferer Jyoti Baghat says she needs the $100,000-a-year drug Kadcyla to extend her life expectancy, but it is "unreasonably expensive". Her family have started a Givealittle page to pay for the drug, but the Breast Cancer Aotearoa Coalition is calling for Kadcyla to be publicly funded.