The wonder drug that saved my life but drained our pockets
Karl Schembri
On the day Vivien Mifsud got to know that she needed Herceptin in April 2006, a British woman similarly suffering from breast cancer had just won the landmark court case that put this highly expensive drug on the UK’s National Health Service. “I burst out crying,” Mifsud says today when she recounts the story of her ordeal, not only fighting for her life but also spending all the family’s money set aside for a decent pension and for her son.
“When I got to know I had cancer, we were stunned, but we took it positively and said we’ll fight it together. It was not the end of the world. But when two months later I was prescribed Herceptin, I knew the costs it involved, and we had no choice… it was bad enough losing all my hair and all the bad things that come with living with cancer, but topping it all there was this exorbitant cost. It was like a death sentence, we had no choice whatsoever. Either Herceptin, or death. You’re looking at this mountain, but when on top of that there is Herceptin, you’re facing Everest.”
At 46, Vivien was one of the few breast cancer patients to discover she had the most aggressive tumour spreading in her body known as HER-2.
One in five breast cancer patients are diagnosed with this kind of tumour and are prescribed Trastuzumab, which is sold under the trade name Herceptin. It is a drug administered from a drip through an injection, costing between €39,600 (Lm17,000) and €46,500 (Lm20,000), depending on the woman’s weight.
It is the drug that is driving families to sell their jewels to save their women, and charities to fork out thousands of euros to help the afflicted patients for whom Herceptin is the only hope.
It is also the drug that government has promised to provide on the public health service. Parliamentary secretary for health Joe Cassar has been promising to offer for free the hefty treatment for breast cancer since last April. But five months later, the drug is still off the government formulary.
A spokesman for the minister confirmed the decision to include Herceptin was taken last April, but added that the junior minister could not give a date as from when it will be available.
“Please note that we have now concluded negotiations with the pharma sector and a new legal notice to set up the correct procedure will be issued shortly to ensure that such decisions are taken efficiently within the context of sustainability,” a ministry spokesman said, stopping short of giving timeframes.
Meanwhile, however, women faced with the HER-2 cancer have no option but to finance their own expensive, life-saving treatment.
“We agreed to do this today, so that any woman having to go through this won’t have the added pressure of finding the money,” Vivien says. “You already have enough on your plate when you’re fighting cancer. So you’re already dealing with an awful lot, and Herceptin is on top of that. Basically, if I didn’t have it I don’t know where I would be today.”
For two months, she knew she had cancer cells but the doctors could not find the tumour itself.
Initial tests suggested she had calcification in her breast, a tiny calcium deposit of 0.8cm that showed up as a fine white speck on a mammogram, but somehow the doctor did not detect the actual tumour. It was only when Dr Stephen Brincat, the oncologist at Boffa Hospital, looked at the X-rays, that he realised this was the tumour.
Further tests concluded the tumour was both oestrogen and HER-2 positive, meaning that she needed both Tamoxifen (used in most cases of breast cancer) and Herceptin.
Being British, Vivien checked with the British High Commission if she could get Herceptin through the UK’s NHS, but having lived in Malta for the last 25 years she was told she was not eligible.
In May 2006, Vivien’s husband, Gino, wrote to Director of Health Dr Ray Busuttil asking why the medicine was not available, but he only got an acknowledgement to his query.
Then health minister Louis Deguara had told him Herceptin needed more tests before it would be provided, even though at the same time it was being introduced in the UK.
“I’m sure it underwent several tests in the UK before it was introduced. I don’t know if Deguara had better tests in mind,” Gino says.
“Dr Brincat was very helpful,” Vivien adds. “He told us about Community Chest Fund straight away and gave us a letter to present to them. They are wonderful people. They committed themselves immediately to pay half the costs. But Community Chest Fund would only provide refunds against receipts, so you have to find the money to start the treatment. We set up a separate bank account where we set aside the money for my treatment, while friends and relatives helped me in every way they could, even through a sponsored run in Derby. Even Voices gave a bit of help.”
Vivien believes also that having a positive attitude takes you halfway through to recovery.
“When you get cancer you’re at your lowest ebb. Cancer equals death. We ended up encouraging relatives who would cry in front of us as if I were already dead. You have to keep your spirits high. There is always someone who is worse off than you. It’s all about being positive.
Vivien also found solace in the knowledge that a lot of people were praying for her.
“Believe me there was an awful lot of prayer going on by everyone involved at that particular time,” she says.
“On the day I found out I had cancer, we had a barbeque at our friends’ house, who had come from England. We decided just to go and forget about my cancer for the night, and it helped. It set the mood for the months to come. You can’t just go to your friends’ crying about your cancer. When we told them a year later they could hardly believe it. I was proud of the way we handled it.
“We used to joke that when I was getting chemotherapy, I was toxic; when I was getting radiotherapy, I was radioactive, and with Herceptin I was just expensive.”
About chemotherapy, Vivien says it made her feel very tired and exhausted, but even more exasperating was the inconsistency of the health system.
“You have no immunity against anything, so you are instructed to stay away from other people as the slightest thing could be fatal,” her husband says. “And yet, when she would have appointments at the general hospital, she had to wait for hours among sick people. Chemotherapy patients should be allowed to pass or given appointments at special times. When you’re getting chemo you have no immune system. How can you send a patient in a waiting room full of sick people? It’s common sense! And yet, all the waiting room would be given the same appointment time. What kind of reasoning is this?”
Meanwhile her husband had to leave his job as a property dealer to be able to care for his wife.
“We lived like hermits,” he said. “We had to take out our life insurance as we needed at least Lm5,000 to start the treatment.”
Vivien was one of the first to use Herceptin, so even for the Boffa Hospital staff it was a bit of unchartered territory.
“Herceptin can have some side-effects, especially heart problems, so they took all the precautions when administering the first few injections,” she said. “You buy this powder, put it in a cold bag, and go straight to hospital to have it injected. There are very nice people at Boffa. Lovely people. Very dedicated staff… after a year and a half it feels like going home there.”
Vivien kept getting Herceptin every three weeks for a whole year, but she says the image of the drip injected to her arm made her feel ashamed at the prospect of thousands of liri “thrown literally down the drip”.
“It felt like throwing money away,” she says. “I felt ashamed. You look at the drip and feel guilty. The Lm7,000 we put into it was our life funding. We came out of it exactly. If it hadn’t been for our funds and the help we got we would have probably had to sell our house.
“I always thought charity was for poor people. I can’t say enough good things about Community Chest Fund. But I feel bad as they could have used the funds for others. It’s not fair on them. How many other cancer patients can they help? Government should be paying for it. It even saves it money in the long-term, as it halves the chances of the cancer returning, saving money on further treatment.”
Herceptin had no side effects whatsoever on Vivien, although some women may have heart complications.
“It is a wonder drug,” she says. “With cancer, you never know if you’re over it, because it never hurts. You get better because you stop taking chemo and radiotherapy. Today I’m staring to feel like I felt before.”
Why is Herceptin so expensive?
Produced by Swiss-based pharmaceuticals giant Roche, Herceptin has made headlines the world over as “the wonder drug” that is saving thousands of lives.
Yet the answers to the question as to why it is so expensive remain elusive.
Questions sent to Roche last week about why the price of Herceptin is so exorbitant remained unanswered.
Genentech – Roche’s US-based subsidiary – has similarly refused to give details to explain the high costs when asked by foreign journalists. Trastuzumab brought in $327 million in revenue for Genentech in the fourth quarter of 2007.
“Someone, somewhere, is making an awful lot of money,” Vivien says. “With all those charities giving funds for cancer research, it’s ending up in multinational corporations’ pockets pulling in cash from charities and from patients. Cancer is such a big business that we’re all paying the price, one way or another.
“The British woman in court asked for her right to life to be upheld. That’s what it is at the end of the day; a woman’s right to life. It shouldn’t be about charity, it’s about the right to life. With all the money donated to cancer research I would expect the solutions to be within reach for everyone. Cures have to be affordable for everybody.”
Clearly, they aren’t, and Herceptin is only the tip of the iceberg. Part of the explanation is that distributors make a huge mark-up on the drug, but the price is further exacerbated by the fact that Herceptin is still under patent, meaning that generic versions cannot be produced despite the evident need.
Pharmaceutical giants justify their exorbitant drugs prices by citing the investment made in research and development, although the amounts received from charities for research remain undisclosed.
In its half-year report for 2008, Roche reports that Herceptin “continued to record double-digit sales growth in the first half-year”, boasting further market penetration after surgey in the US, Europe and Japan, where a staggering growth of 23% was registered after the product’s approval in February for the treatment of early breast cancer. “Strong double-digit sales increases” were also registered in the Asia-Pacific.
TRIP-ping on death
What ultimately keeps the prices sky-high are the pharmaceutical patents, officially known as Trade Related Intellectual Property Rights (TRIPs).
“Nowhere is the intellectual property conflict being fought out more intensively than in the field of public health,” writes Kevin Watkins, Oxfam’s head of research, in a seminal paper on Pharmaceutical Patents published in Anti-Capitalism, A Guide to the Movement.
TRIPs are regulated by the World Trade Organisation (WTO). A drug like Herceptin would have a 20-year exclusive patent, meaning that generics cannot be produced in the period while the inventor can sell its product at whatever price it deems appropriate.
This is justified on the claim that drug companies need time to recoup their research investment, but this is having serious adverse effects particularly on developing countries in need of HIV/Aids drugs.
How does Herceptin work?
Herceptin targets the HER-2 receptor, which stands for Human Epidermal Growth Factor Receptor 2.
HER-2 receptors are ‘unlocked’ by what is known as growth factor, which makes cells grow. Cancer cells that have a lot more HER-2 receptors than normal are celled HER2-positive cells. An HER2-positive cancer grows more quickly than other types of cancer.
About one in five women with breast cancer are HER2-positive, meaning that the cancer is likely to grow more quickly than other types of cancer.
Herceptin is used on women with secondary breast cancer, which is what happens when breast cancer cells spread to other parts of the body.
Herceptin works by sitting on the HER-2 receptors and blocking the growth factor, while helping to stop the cancer cells from growing as quickly. In the process, HER2-positive breast cancer cells are killed. The drug is said to half the chances of the cancer returning.
Because Herceptin targets cancer cells, users are less likely to get side effects seen with other cancer treatments which also affect normal cells. In fact, Herceptin users should not usually lose any of their hair while on the actual treatment. However, some side effects may still happen. Some women had heart complications using the drug.
One woman’s fight for Herceptin
The woman referred to by Vivien Mifsud was Ann Marie Rogers of Swindon, Wilts, who won an appeal two years ago against an earlier High Court decision upholding Swindon Primary Care Trust’s refusal to fund Herceptin.
Rogers had said she was prescribed the drug by her doctor but was refused it by local health bosses, and had to borrowe £5,000 to fund her treatment. But she said she could not pay anymore and accused Swindon Primary Care Trust of putting “money before life”.
The landmark ruling declared that a breast cancer patient should have the drug Herceptin, paving the way for the NHS to fund the drug. The judgment is estimated to cost the NHS around £100m a year.
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“I burst out crying,” Mifsud says today when she recounts the story of her ordeal, not only fighting for her life but also spending all the family’s money set aside for a decent pension and for her son.