Your money or your life for cancer sufferers

Breast cancer patient Aletia Hudson faces paying $100,000 for treatment with the drug Herceptin. Friends and former colleagues are helping her to raise the money. Picture / Dean Purcell

Aletia Hudson is watching her weight. Not that she's obese. She just knows that shedding some kilos could save her thousands of dollars. She wants Herceptin treatment for breast cancer and her oncologist has told her she is an ideal candidate but that it would cost $100,000.

She has very good reason to want the medicine proclaimed by the New England Journal of Medicine as "stunning" and "maybe even a cure".

It could prevent a recurrence of the malignant tumour that has jolted Hudson's life this year and led to the removal of her left breast. It could save her life.

Friends and former work colleagues are helping her to pay $34,000 to a private oncology clinic for chemotherapy with two drugs. Under the public health system she qualifies for only one of the drugs. She must pay for the other one, which is not funded for women who, like her, have early breast cancer, although it is funded to extend the lives of women whose cancer has spread and become incurable.

The 33-year-old inner-city Aucklander, who has had to take a break from work as a camera assistant in the movie industry, does not know how she will pay the Herceptin bill, which would buy half a small apartment, but she does know she can trim the price if she trims her weight. The larger you are the larger the dose.

"It motivates me," Hudson says. "I really make myself go for a walk each day because you don't want to put on too much weight so it doesn't cost so much. I'm counting on the fact that the average woman is usually taller and larger than me. My figure is a hundred grand."

That $100,000 is on the light end of average, says Associate Professor Vernon Harvey, who works in the public and private sectors.

"The average is $100,000 to $120,000. It's done entirely on weight. I gave someone a quote for $190,000 the other day."

Patients have the stark choice of finding the money - even the insured, because the companies do not pay - or facing a greater risk of cancer recurrence, or death.

That decision has become Pharmac's too, with the filing last month of an application by Herceptin's supplier, Roche, to extend state funding to cover cases of early disease.

If Pharmac and the 21 district health boards agree, it could blow the Government's cancer drugs budget, pushing it to nearly $80 million from its present $47 million.

"It's a challenge," says Pharmac chief executive Wayne McNee.

He is not alone in quaking at the price of Herceptin. Health funders throughout the world are worried over how to pay for the growing wave of extremely expensive new cancer drugs.

In New Zealand, with a Government loath to spend more than the existing one-in-five taxpayer dollars on health, spending an extra $30 million on Herceptin would inescapably mean not funding other new drugs, driving down the prices of older ones, or trimming some other area of health care.

"If you spend on one medicine, you don't have it available for others," says McNee.

Pharmac's budget, which governs access to state-funded drugs from pharmacies, is rising by 3.2 per cent. To make the best use of this it relies on techniques such as asking drug companies to compete in a tendering round, and "reference pricing" to the lowest price within a group of drugs.

"If that's not enough, we ask DHBs for a certain amount of money," McNee says. "They then have to trade off. If they have to find $20 million or $30 million for Herceptin, what else is not going to be funded as a result?"

In past efforts to save money, some public hospitals have given up surgery such as uncomplicated hernias, or have tightened access to elective surgery such as gallbladder removal, which means that to qualify for treatment patients needed to be more seriously ill.

Harvey recalls New Zealand falling behind in cancer drugs before a catch-up in 2001 and thinks it is possible that Herceptin will not be funded for early breast cancer.

"The cost is huge. It's roughly one to two times the national chemotherapy budget. If they fund Herceptin there will be a whole lot of other drugs that don't get to square one. There will be a lot of people who miss out.

"It is still a very effective drug and those people who get it will get good benefits from it."

Which is what led to such enthusiasm from the New England Journal of Medicine. Herceptin, given intravenously, is one of a new type of cancer medicines. It is not chemotherapy. It's an immune system therapy, aimed at cancer cells and nothing else. Chemotherapy attacks healthy cells as well, causing side-effects like nausea and a weakened immune system.

Targeted drugs exploit molecular features of the cancer alone. Herceptin's most noticeable side-effect is heart problems, but this affects at most 1 per cent of patients.

Approved in the United States in 1998, it was one of the first targeted cancer therapies. It targets a protein called human growth factor 2 (HER2). The gene that produces this protein is present in all breast cells, but sometimes far too much is produced, causing the rapid cell growth of HER2-positive breast cancer, which accounts for 20 to 30 per cent of all breast cancer and is an aggressive form that responds poorly to chemotherapy.

The medicine is a large molecule that fits into the shape of the protein and blocks it.

"There are three or four ways by which it might be working," says Stuart Knight, the New Zealand sales and marketing director for Roche Products. "Scientists think it's part of programmed cell death. It flags the cell for destruction by the immune system. You are blocking the HER2 pathway, an important pathway for cell division and growth."

Knight cites international trials involving more than 13,000 women with early breast cancer which have shown hugely improved results for those who received Herceptin for a year following standard treatment.

They were found to be 46 per cent less likely to die or suffer a cancer recurrence than those who received standard treatment.

In one trial, 14 per cent of the Herceptin recipients died or had a recurrence within a year, compared with 23 per cent of the other women.

One year is a short period of follow-up and longer trials are being done.

Will it be a cure?

Harvey: "That's what everybody hopes. The expectation is that when we follow up long enough it will be that."

But its success poses a dilemma.

"It's a tremendous cost," says Harvey. "For most it's way out of what they can afford. A lot of people are very upset that it's that expensive because they've read about how good it is, how much it might help them, and they want it.

"For some it's so far out of anything they can afford, they just say, 'I can't afford it'. Others say they might just about afford it, but really they can't. Some are prepared to mortgage their house and so on.

"It's a terrible choice. It's a very very uncomfortable discussion that we have with them."

It took a while for it to dawn on Aletia Hudson just how expensive Herceptin is and that she might have to pay for it herself. In the weeks following her diagnosis in August she read newspaper coverage of the drug.

"I didn't quite realise that I was going to have to pay for it. I thought there were other drugs I could get publicly."

Last month her private oncologist told her she was a prime candidate. He said: "I would highly recommend it for you."

Hudson's colleagues in the film industry helped raise money for her treatment and that has been supplemented by $16,000 paid or promised from an auction of friends' art works.

She is thankful for their support, which will fund her through the next few chemo courses, and says: "It's a big amount of money".

Her parents have died, her siblings can't help with such large sums, so she is planning another fundraising event in March.

But why do the new drugs - Glivec for leukaemia, Mabthera for non-Hodgkins lymphoma, temozolomide for brain cancer - cost so much?

Knight declines to talk about Roche's pricing policy, but does say that one main reason for Herceptin's price is the cost of research and manufacture. "We don't think of it in terms of cost. We think of it in terms of value."

Most women with HER2-positive breast cancer are under 50. "The drug therapy might cost you $60,000, but you are talking about somebody who is a mother, who is working, paying taxes, going to be a contributing member of society."

But Pharmac, facing annual cancer drug bill increases of at least 30 per cent for the next three years, is very interested in the cost. McNee, who says initial talks with the company have been promising, says he will ask if Herceptin needs to be so expensive.

A Glivec-style deal will be explored. Pharmac paid Novartis its price for the wonder drug, technically up to $88,000 a year for each patient, but the company agreed to "risk-sharing" with Pharmac and to big price cuts on other drugs.

High prices also came up in Pharmac's briefing paper to new Health Minister Pete Hodgson, which cites a book by Marcia Angell, a former editor of the New England Journal of Medicine. In the New York Review of Books, Angell questions the high cost of many new medicines in the US and rejects the calculation of an American study, often quoted by the pharmaceutical industry, that each new drug costs US$802 million ($1.16 billion) to bring to market.

"The prices drug companies charge have little relationship to the costs of making the drugs ... ," she says, adding that the handful of truly important drugs introduced in recent years are mostly based on taxpayer-funded research.

Pharmaceutical industry profits have fallen, she says, but are "still beyond anything most other industries could hope for ... it is difficult to conceive how awash in money big pharma is."

Angell says that profits of the top companies were 18 per cent of sales in 2001 but had shrunk to 14 per cent by 2003. Research and development received 14 per cent in 2000. The big winner was marketing and administration, which was 36 per cent in 2000.

But for patients faced with paying, such calculations are academic.

Hudson is stressed by the costs, sick from the chemo (the radiotherapy is yet to come) and bitter to have learned by personal experience that the New Zealand health system does not pay for everything.

"I've been working hard since I left school. I didn't realise [the public health system] wouldn't be there when your life is at risk."

Hudson is engaged and plans to marry in 2007, but "I have to wait for my breast reconstruction first".

So she retains hope - that she will have Herceptin, and that she will have a future.