Your money or cancer takes your life ...

Many cancer patients have had to pay for drugs. The unlucky have been unable to afford them. Soon a fairer scheme will operate, reports MARTIN JOHNSON.

Cancer patient Sandy Birse is a victim of bad timing - a $30,000 victim.

The Auckland man is part way through a $30,000 course of chemotherapy, the most effective treatment available to him. He and his family are having to pay the bill because the Auckland District Health Board won't.

Free access to newer chemotherapy drugs such as the Irinotecan Mr Birse needs varies around the country's six public cancer units in Auckland, Hamilton, Palmerston North, Wellington, Christchurch and Dunedin.

But the Ministry of Health is reversing its policy of not paying for the drugs. It says patients should have equal access to them from October 1 and has increased funds to pay for this.

That is too late for Mr Birse, whose treatment is due to end a few days before then.

The 48-year-old computer consultant, who had surgery before the chemotherapy, is annoyed that he could have received the drug free at Wellington Hospital, but not in Auckland. Now he is upset and cynical that he will just miss out on the new policy.

Doctors have told him the most likely outcome of the therapy is an extension of his life by months, but tests show a dramatic decline in the activity of the tumours in his liver. He is putting on weight and hopes to resume work within a few months.

What is the demand for cancer treatment?

One in three New Zealanders will develop cancer in the course of a lifetime. In 1995, there were 17,798 new cases.

The number of patients receiving radiation therapy is rising 5.4 per cent a year, and in Auckland the annual increase in chemotherapy patients is running at 9 per cent.

The rising population accounts for some of this increase. Other factors include greater longevity - most cancer patients are elderly - and improved detection.

How has the ministry's policy changed?

Since the ministry released its report on non-surgical cancer treatment for adults, it has approved the use of 10 newer chemotherapy agents for certain patients.

Cancer specialists welcome the change, saying it is long overdue.

What are the drugs and who is allowed them free?

Irinotecan. Used to treat colorectal cancer that has metastasised (spread). It is used as an initial treatment with another agent, 5FU, or for patients who have relapsed after receiving 5FU.

It costs up to $25,000 for a six-month course of the drugs, or $30,000 for the whole package of treatment.

On its own, 5FU will shrink the tumours in about 20 per cent of patients. This rate doubles with the combined therapy.

Taxanes - Taxol and Taxotere. For initial treatment of ovarian, fallopian tube or primary peritoneal cancer. Also for subsequent chemotherapy in patients first treated with other drugs.

With breast cancer, taxanes are for patients who have relapsed after treatment with the standard anthracycline drugs, or for whom those drugs are unsuitable.

With lung cancer, they can be used to treat non-small-cell cancer in advanced disease or with radiotherapy; and as a second-line therapy in small-cell cancer.

A course costs about $20,000.

Xeloda. For metastatic colorectal cancer.

Also for metastatic breast cancer following relapse after treatment with taxanes and anthracyclines. Because it is a tablet, it can be used when taxane/anthracycline therapy is unsuitable, for example when access to veins is poor.

It can substitute for 5FU when this would be used alone and vein access is poor or the patient has a needle phobia.

Up to $7000 for a course.

Gemzar. For advanced lung and pancreatic cancers.

Also for ovarian, fallopian tube or primary peritoneal cancer after taxane therapy and as the initial therapy in patients for whom taxanes are unsuitable.

Costs up to $15,000 for a course.

Navelbine. For metastatic breast cancer after anthracycline/taxane therapy and for those patients for whom that cocktail is considered unsuitable. Also for advanced lung cancer.

Costs up to $15,000 for a course.

Eloxatin. For metastatic colorectal cancer after failure of 5FU and Irinotecan. Also for patients in whom 5FU has failed and who are unsuitable for Irinotecan.

Costs about $20,000 for a course.

Mabthera. This drug can be used as the initial therapy for transplant related non-Hodgkin's lymphoma.

For low-grade non-Hodgkin's lymphoma, it can be used after failure of anthracycline treatment, and when standard chemotherapy has failed and the patient is unsuitable for anthracyclines.

Costs up to $20,000 for a course.

Herceptin. For metastatic breast cancer patients in whom the cancer cells carry a particular molecule that is attacked by the drug. About one-third of breast cancers have this molecule.

Costs about $50,000 for a year-long course, the most common duration.

Interferon. For the conditions carcinoid tumour, metastatic malignant melanoma and metastatic renal cell cancer.

Costs about $12,000 a year. Doctors say most patients in whom the drug works are given it for more than a year.

Aredia. For malignant hypercalcaemia (a complication of cancer resulting in abnormally high calcium levels in the blood). Also for certain kinds of metastatic breast cancer and myeloma, and for pain control in some conditions.

This drug is already funded by Pharmac for certain hospice patients.

Given by monthly injections which cost $600 each.

How effective are these drugs?

"They will control the disease for a period of time in a number of patients," says Dr Vernon Harvey, Auckland Hospital's clinical director of medical oncology.

These chemotherapy agents are palliative. They improve the quality of patients' remaining time and extend their lives, but they are not expected to cure cancer.

But some patients do remarkably well on them.

Says Dr Harvey: "We've had a lady on a Herceptin clinical trial for four years at a cost of [about $250,000]. The drug company paid for that. She is in her 40s and doing very well. She had metastatic breast cancer. The average survival is one year. Four years later, she's still having treatment."

How much is the ministry spending on the newer drugs?

It spends about $85 million a year on cancer treatment, excluding surgery. An extra $8 million will be allocated to improve these services - $4 million for chemotherapy and up to $4 million for radiation therapy.

Is this enough?

Auckland and Palmerston North Hospitals are worried that it may not be.

Auckland's chief operating officer, Neil Woodhams, says he has not done the analysis yet but is concerned because the number of patients who may need the drugs is unknown.

Says Dr Harvey: "Funding needs to match the usage. I'm concerned that the usage will be more than the funding that's put aside for it."

Based on the ministry's proposed price increase for each chemotherapy attendance, he understands that Auckland Hospital will receive about $750,000 a year extra - "It doesn't seem to be going to provide as much money as we are going to spend if we provided treatment for all the patients."

The ministry's chief medical adviser, Dr Colin Feek, says the price was worked out by averaging the costs of Auckland, Wellington, Waikato and Dunedin Hospitals.

"Auckland will have to ask themselves why they are consistently higher, if that's their problem."

He says large teaching hospitals like Auckland and Green Lane always cost more to run and are given a "tertiary adjuster", financial top-ups to acknowledge the highly specialised services they provide to the region and the country.

But the board running those hospitals has argued for years that the top-up is too small.

How many patients might need the newer drugs?

Dr Harvey estimates that 150 patients a year in Auckland have been paying to be given the drugs at private clinics.

Many times that number may have been suitable candidates but would not have been able to afford them, he says.

Why are there restrictions on who can receive the drugs?

Because they are so expensive, their use has been limited to the areas in which they have been shown to help patients.

Some specialists say the permitted range of uses is fairly narrow, but that is acceptable because of the high cost and the need to spend public money wisely.

Are these drugs available on public health systems overseas?

Dr Harvey says most of the drugs are paid for in a range of Western countries, including Australia and Britain, although Herceptin is not free in Australia.

"This is just a catch-up," says Dr Peter Dady, medical director of the Cancer Society, Wellington Hospital oncologist and a persistent critic of how long the ministry has taken to pay for these drugs."We're just now joining the developed world."

The report recommends developing a process for evaluating future chemotherapy agents.

How have some hospitals managed to provide the drugs?

Wellington Hospital oncology department simply overspent its pharmaceuticals budget by $300,000, says Dr Dady, and the hospital is now trying to reduce its overall spending on drugs.

Doctors in the department had prescribed the drugs, "because we believe they have to be given". A colleague was "hauled over the coals" by hospital management, "but they stopped short of banning it".

A Palmerston North Hospital oncologist, Dr Garry Forgeson, says some patients have received the drugs at the hospital but paid for them themselves. The administration of the drugs was paid for by the hospital.

Auckland Hospital last year became the last of the six cancer units to provide taxanes free to patients, says Dr Harvey, and another worry he has is that the new ministry funding is expected also to cover the past losses from providing these drugs when they were not paid for.

What other recommendations does the cancer report make?

It says unnecessary delays in radiation therapy are unacceptable. Some patients have had to wait up to 20 weeks, and two Auckland women who had undergone surgery for breast cancer suffered relapses while waiting for radiation.

Waikato Hospital paid for some patients to go to Australia for treatment, while some Auckland patients have paid their own way. The service is not available privately in New Zealand.

The delays have been caused by the shortage of radiation therapists, partly due to the lure of fatter paypackets overseas.

The report says that in May the six cancer units were short of 27 radiation therapists, out of 147 positions, and five radiation oncologists, out of 30 positions.

The report recommends more attractive salaries. It also says cancer research in New Zealand suffers many weaknesses, which need to be fixed, such as lack of money and receiving a low priority from health boards.

Is radiation therapy getting enough money?

A 1999 report for health officials recommended $254 as the sustainable long-term price to pay cancer units for each attendance by radiation therapy patients, but most units this year receive only $224.

The price covers everything from wages to replacing machinery. Linear accelerator machines cost under $3 million in 1999, but now cost $3.5 million, and more are needed.

The head of the cancer treatment working party, Auckland's radiation oncology head, Dr John Childs, said some of the units, including Auckland, might have to be paid more.

Dr Feek says the indicative price for next year is $236, and that in Auckland's case that "equates roughly" to $254 once the price adjustment for tertiary services is included.