Another victim of NHS pennypinching: 'I was told I was too young for a smear test but now I am dying of cervical cancer at just 24'

Twice Katie asked for a smear test, but was told she was 'too young' to need one. Now 24, she is dying from cervical cancer, one of many young women who have fallen victim to a scandalous change in health policy.

One year ago Katie Hilliard was a typical 20-something - working in the City, going out with friends from university and generally just having fun. But the 24-year-old now has cervical cancer and despite a hysterectomy, chemotherapy and radiotherapy, the disease has spread to her lymph nodes and lungs. Doctors have given Katie at best two years; at worst 11 months. 'They have not been very positive about the future,' she says simply.

What makes her story even more tragic is that cervical cancer, if detected early, is a preventable disease. In fact, Katie had actually requested a smear test - used to detect the pre-cancerous cell changes linked to the disease - twice in the four years before her diagnosis. Yet each time she was refused, because she was 'too young'. Too young to be eligible for a smear test, though not too young to contract cervical cancer.

She says: 'If I'd had a smear test when I was 21, all of this could have been avoided.' Instead, Katie is now undergoing more chemotherapy and is desperately researching alternative ways of fighting the cancer. She is in a lot of pain and has trouble walking. 'I feel old before my time, but I want to live. I'm not going to give up,' she says. 'I wanted to have children and buy a house, but getting a mortgage is now impossible,' says the insurance broker from Haywards Heath, West Sussex.

She and her fiance still plan to marry this October, and she has had her eggs saved in the hope that she goes into remission. 'Some days I'm really hopeful, other days I don't know how I'm going to do this. This should never have happened. I am too young to be dealing with this. 'It is something that a simple smear test should have sorted out.'

Like Katie, Claire Everett, 22, a married mother-of-one, is terminally ill with cervical cancer. She has no doubt that a smear test 'would have made all the difference'. An otherwise healthy young woman, when she developed worrying symptoms (an unusual discharge) last year she immediately went to the doctor; the cancer was diagnosed and initially chemotherapy and radiation were thought to have been successful. Yet last summer, two months after the treatment finished, Claire was told the disease had spread through her pelvis and the cancer was now incurable.

'My mum was crying her eyes out,' she recalls. 'She asked if the cancer was terminal and I walked out of the room. Sometimes I think that if I ignore bad news, it's not happening. 'My initial thought was not for me, but for Alex, my little boy, who's two. The thought that I might not see him grow up broke my heart.'



Both Katie and Claire had fallen foul of a recent change in government health policy. Until a few years ago, all women in the UK were offered regular screening for cervical cancer from the age of 20; then in 2004 the screening age in England was raised to 25 (it remains at 20 in Scotland and Wales). This was because the risk of cervical cancer in younger women was thought to be negligible. But experts believe this change in policy means the condition could go undiagnosed while it is still highly treatable. It was 'a very poor decision', says Professor John Shepherd, surgeon and gynaecological oncologist at The Royal Marsden Hospital in London. 'Approximately 10 per cent of patients diagnosed with invasive cervical cancer are women aged 30 or younger, and these numbers are likely to increase.' ...

Screening at 25 is far too late, says Professor Shepherd. He believes women should ideally have their first smear test as soon as they become sexually active and certainly no later than the age of 20. This is in line with America, where screening begins at 20 or within three years of first sexual contact - whichever comes earlier. In other countries, such as Australia, screening begins at 18.

'I think it is inappropriate in 2008 that the NHS screening programme in England does not acknowledge and thus protect young women who are sexually active before they reach the age of 25,' says Pamela Morton, director of the cervical cancer charity Jo's Trust. 'Frankly, it's disgraceful.' ...

Quite what impact the decision to postpone the screening age to 25 has on cervical cancer rates won't be known until the figures become available around 2010. But Professor Shepherd is clear: 'I appreciate that there is a health economics issue here - it will cost money to screen younger women - but I still think it should be a priority. 'Cervical cancer is a preventable disease and catching it early will save lives.'


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Health decisions with an eye to the bottom line

The savings could be huge, according to lawmakers and researchers, if patients can be pressed into the best, most cost-effective treatments. Of course, that's a big if. But it sounds reasonable as long as it is kept optional

Medical researchers and politicians are tiptoeing into an area of healthcare that makes some Americans uncomfortable, even angry, and it has nothing to do with such hot-button issues as cloning and stem cell research. This time, the controversial idea is to press doctors and patients to use particular drugs and treatments in order to save money.

On the surface, it seems simple enough: Billions of dollars could be saved if everyone adopted the regimens that research showed were best and most cost-effective -- which, experts say, happens far less than most patients think. The problem is that any push for doctors and patients to make a particular choice collides with the cherished American belief that medical decisions are nobody's business but the patient's and the doctor's. Least of all the government's. Also, since the research is based on statistical analysis and almost all medical choices involve trade-offs, the "best practice" is sometimes arguable.

Yet scientists, medical policy specialists and leading politicians are starting to embrace the idea of using cost-effectiveness research to drive individual medical decisions. They call it "comparative effectiveness" research, sidestepping a direct reference to costs.

Democratic presidential candidate Sen. Barack Obama of Illinois is calling for substantial investment in the idea. And GOP candidate Sen. John McCain is interested. Sens. Max Baucus (D-Mont.) and Kent Conrad (D-N.D.) are to introduce legislation to create a government institute for such research. Baucus heads the finance committee, which oversees Medicare and Medicaid, and Conrad heads the budget committee.

Americans are expected to spend $2.4 trillion on healthcare in 2008. Within a decade, the figure is expected to surpass $4 trillion a year and account for 20% of the gross domestic product, the prime measure of economic output.

"Learning how to spend smarter is one of the three or four critical things that needs to happen in our healthcare system," says Gail Wilensky, a leading Republican health policy expert and former Medicare administrator. "Not only is it something the Democrats have been interested in, but a number of Republicans think this is the kind of information that is consistent with market strategies [to reform healthcare] that help doctors and patients make better decisions."

Obama's plan to control costs and make insurance more affordable includes an institute to study cost-effective treatment options. McCain's healthcare advisor says a greater role for cost-benefit studies is "imperative."

The candidates say their sole purpose is to generate information to help doctors and patients make better decisions -- not to steer insurance coverage. But experts say that's exactly where the process leads: First, researchers would identify "best practices," then Medicare and private insurers would come under pressure to penalize those who rejected the guidance.

Initially, research would probably focus on treatments that have not yet been widely adopted. But common treatments debated within the medical community -- such as surgery versus physical therapy for bad backs -- could also get scrutiny.

In the future, some experts say, approved medical tests and treatments could be handled the same way prescriptions drugs are: Patients would pay little or nothing for generic drugs or "high value" procedures and higher co-payments for treatments judged to be of "low value."

Medicare does not explicitly take costs into account. It bases coverage decisions on whether a new treatment is "reasonable and necessary." Supporters of adding cost considerations to the equation -- using "comparative effectiveness" research -- say the goal is to develop a knowledge base that government programs and private insurers can rely on to guide decisions.

"People have pointed out that a lot of the care in our system is inefficient, wasteful or inappropriate -- maybe 20% or 30%. The problem is, it doesn't come tagged," said Sean Tunis, Medicare's former chief physician. "So any efforts to restrain spending on unnecessary care are going to involve difficult decisions depriving people of things they need, or think they might need. We haven't been very honest about it, and we haven't figured out a good way to do it."

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