Fighting for the right to mammograms

Last month, the US Preventive Services Task Force (USPSTF) revised previous recommendations on routine mammogram screening for breast cancer. But far from being thanked for relieving women of having to go through a stressful, and probably unnecessary, process, the Task Force has been blasted for potentially condemning many women to an early death.

As an independent group of 16 experts put together by the US Department of Health and Human Services, and tasked with the job of reviewing the effectiveness of preventive health services, the Task Force up until recently enjoyed relative anonymity. But all that changed as its new recommendations unleashed a nationwide political uproar. While the Task Force previously encouraged annual screenings for women beginning at the age of 40, it now recommends that:

• Women aged 40 to 49 who are not at high risk of developing cancer should cease annual screening mammograms;
• Women aged 50 to 75 should have mammograms only biennially;
• Doctors should stop teaching women breast self-examination techniques.

Within hours of announcing its findings, the Task Force faced a barrage of attacks from women, doctors, journalists and politicians across the US. The onslaught was swift, harsh and emotionally charged.

The new guidelines fly in the face of recommendations from the American Cancer Society and other professional groups. An annual mammogram from the age of 40, along with monthly self-examinations, have long been presented as the gold standard in preventative breast cancer care. The new advice is understood by many as a step backwards for women, and the Task Force has been accused of putting money before women’s lives.

Others link the Task Force’s finding to the already fractious healthcare debate in the US. Republicans and some doctors, including members of the American College of Radiology, say the new guidelines show up the Obama administration’s desire to save healthcare dollars. Republican representative Marsha Blackburn declared that ‘this is how rationing begins. This is the little toes in the edge of the water.’ For Blackburn, the recommendations confirm Republican fears about the Democrats’ healthcare agenda: ‘This is when you start getting a bureaucrat between you and your physician. This is what we have warned about.’

However, the Obama administration also distanced itself from the panel’s findings. Kathleen Sibelius, the head of the Health and Human Services Department, was quick to tell CNN: ‘This panel was appointed by the prior administration, by former president George Bush.’ She made clear that the findings would not influence policy and would not be used to deny any women insurance coverage for mammograms. Sibelius advised women to ‘Keep doing what you have been doing for years… My message to women is simple. Mammograms have always been an important life-saving tool in the fight against breast cancer, and they still are today.’

But while there has been a near universal condemnation of the USPSTF recommendations from across the political spectrum, there is hardly anything spectacular about the Task Force’s findings; in fact, the recommendations are rather modest given the scant evidence that there are meaningful, tangible benefits to screening. As Professor Robert Aronowitz, author of Unnatural History: Breast Cancer and American Society, explained in the New York Times: ‘It’s the same debate that’s gone on in medicine since 1971, when the very first large-scale, randomised trial of screening mammography found that it saved the lives only of women aged 50 or older. Despite the evidence, doctors continued to screen women in their 40s.’

In 1977, after an official of the National Cancer Institute voiced concern that women in their forties were getting too much radiation from unnecessary screening, the National Institute of Health held a consensus conference on mammography, which concluded that most women should wait until they’re 50 to have regular screenings (1).

Indeed, while American women in their forties now see it as their right to have a routine annual mammogram as part of their medical care, this practice is far from common on a global scale. The USPSTF’s new recommendations, if they are ever adopted, would only bring US screening practices in line with screening standards in many other developed nations. The World Health Organization does not recommend screening mammograms for women in their forties and many developed countries do not offer routine mammograms to younger women. In Britain, for example, women do not undergo regular screening mammograms until they’re in their fifties, and even then they are screened only once every three years.

So what caused the Task Force to change its recommendation and why has it been met with such resistance? At the heart of this controversy is the sad truth that mammogram screening has not been as helpful in preventing deaths from breast cancer as many might have hoped. For all the rigorous screening to which American women are subjected, the death rates from breast cancer are not dramatically different in the US than they are in other parts of the developed world. US mortality rates from breast cancer have improved in recent years, but they have followed a similar trajectory in the UK and elsewhere, despite marked differences in screening practices (2).

On the surface, screening seems to be such a good idea. The widely accepted logic is that early detection of cancer is a key factor in beating the disease. Surely, it is reasoned, if cancers are detected early, it allows us to treat them swiftly and with better outcomes. But, unfortunately, early detection of breast cancer does not guarantee a cure. Some women who have frequent mammograms still die of breast cancer. That is not to say that screening makes no difference at all. Screening appears to reduce the risk of dying from breast cancer by up to 15 per cent. That sounds significant, but amongst women in their forties, for whom breast cancer is still rare, the bottom line is that with screening, a fortysomething woman’s risk of dying of cancer drops only from three per cent to 2.7 per cent. Still, many argue that it is worth screening more women more often even if it only saves a few lives.

But the Task Force notes that the process of screening itself is not risk-free. While some women might be saved by screening, many more will be put through the pain of having false positive results, causing them to go through further unnecessary tests and biopsies. A significant number of women will, in turn, face ‘overdiagnosis’ – that is, they will be diagnosed and fully treated for breast cancer for small asymptomatic tumours that would never have developed into a clinical disease (3).

However, it seems that many women do not experience cancer screening like this. Instead, as more women are diagnosed with breast cancer, and more of those women survive, the screening process and treatment look like a medical breakthrough. It must be hard both for breast cancer survivors and their families and friends to acknowledge that their painful, even disfiguring, treatment may have been a waste of time. But it is important to remember that the proper aim of screening is to save lives, not to spot cancers.

It is this dilemma that the Task Force is now trying to address. It has concluded that, when it comes to screening fortysomething women, the risks posed by false positives and overdiagnosis outweigh the benefits. The panel has claimed that healthcare costs were not a consideration in their deliberations or recommendations. But announced in the middle of the healthcare debate it was inevitable that the recommendations would be used by Republicans as a stick with which to beat the Obama administration. After months of banging on about the dangers of so-called ‘socialised medicine’ and holding out the spectre of Orwellian ‘death panels’, any recommendation to reduce access to medical services was likely to be turned into a political and partisan football.

What has clearly surprised the panel, however, is the wider hostility that its recommendations provoked. Considering that most, if not all, women do not enjoy having mammograms, which are painful and cause considerable stress and anxiety, perhaps the panel expected American women to respond to its findings with a sigh of relief. After all, the stated objective of the inquiry was to reduce women’s unnecessary exposure to risky procedures.

But that is to ignore the way that many Americans view healthcare provision, which is a far more individualised system of care than in Europe. The entire edifice of healthcare is organised around individual insurance plans. This means that Americans approach the medical establishment not as patients, but as lone consumers. For those who can afford it, healthcare is a market place where consumer demand, rather than sound medical practice, determines the availability of medical procedures like mammograms. In this context, screening mammography is seen as a great success story of modern medicine; from the individual’s perspective the number of cancer ‘survivors’ is growing.

Moreover, for many, breast cancer screening holds a special significance in the history of modern medicine. American women long felt that they were mistreated by a male medical establishment that was historically indifferent to women’s needs. As a result, feminists challenged the medical elites and specifically took on the cause of fighting breast cancer as their own. Feminists urged their sisters to stop being victims of the medical establishment. Activists evangelised about the virtues of early screening, fought to get mammograms covered by private health-insurers, and promoted the virtues of self-awareness through teaching self-examination techniques, everywhere from university campuses to shopping malls. Many women still devote a considerable amount of time and energy to campaigning and raising money for ‘the cure’.

Breast cancer is no longer just a disease. It is a political cause endorsed by everyone from footballers to Hollywood superstars. And it is a cause that inspires new evangelists in every generation. Today, though, breast cancer activists no longer need to set themselves against the medical profession as their evangelism has spread to the medical elites themselves. The promotion of breast cancer screening has in many ways paved the way for much current medical thinking. The American medical establishment has increasingly endorsed the notion that diseases like breast cancer can be defeated by individuals acting responsibly. Top doctors now embrace the idea that individuals can determine their medical outcomes through the adoption of healthy lifestyles, regular diagnostic screening and preventative medicine. Even the Obama administration states that one of the central planks of the new healthcare proposal is to ‘invest in prevention and wellness’.

As a result, Americans are now enormously committed to cancer screening. As Amanda Schaffer, writing in Slate, noted: ‘In a national survey… 87 per cent of respondents agreed that “routine cancer screening is almost always a good idea” and 74 per cent felt that early detection saves lives “most or all of the time”. In fact, so enthusiastic were the survey participants that 73 per cent of them said they would rather receive a free full-body CT scan than $1,000 in cash.’ (4)

The mantra for prevention and screening has now been repeated so often and so loudly by so many that it is difficult to see how any recommendation to limit breast cancer screening will gain much of a hearing, however scientifically well-founded it might be. The screening mammogram has become almost a religious ritual that all responsible women should apparently adhere to, and it is a ritual that American women are unlikely to give up without a fight.

Helen Searls is executive producer at Feature Story News in Washington, DC.

(1) Why do we keep coming around to the same advice — but never comfortably follow it?, New York Times, 20 November 2009

(2) The changing global patterns of female breast cancer incidence and mortality, Breast Cancer Research 2004; 6(6): 229–239

(3) The mammogram storm: benefits vs risks, Philadelphia Inquirer, 20 November 2009

(4) Screen saver?, Slate, 17 November 2009