Patient No More: The Politics of Breast Cancer
By Sharon Batt
Australia & New Zealand Edition
Spinifex Press, 1996. 431 pp., $24.95
Reviewed by Dot Tumney
Nothing delights a reviewer like a juicy quote explaining the reason for a book in a dozen lines. So:
"When baby boomers like me get breast cancer, learning that the mortality rate from breast cancer has remained constant over the past forty years comes as a rude awakening. We feel bewildered rather than privileged by the treatment choices we face. A second shock is the discovery that breast cancer — unlike most other cancers — is a disease of affluent countries. The getting and spending of money neither protects us from getting breast cancer, nor offers us a sure cure if we are stricken.
"Breast cancer activists have, nonetheless, led the lobby for increased spending on breast cancer research. Before we go any further we need to look closely at the information that passes the consumerism filter — and examine what gets left behind."
The consumerism filter channels information for general consumption into a neatly marketable win-win profile. Spend money on medical equipment, drugs, research and see the economy and health both flourish. The limitations of the equipment, the side effects or poor performance of the drugs and whether the research is targeted for the maximum benefit of the patient, present or future, is another matter. These, along with past performance, are screened out. They are messy, not to mention unprofitable.
Batt provides in-depth discussion of all aspects of the breast cancer industry in the US and Canada, and additional local material is added at the end of each section. The mammography debate proceeds on a footing of confusion between screening and diagnostic testing and gets cloudier. Breast cancers are not uniform in appearance or behaviour, some are non-invasive and others metastasize long before they are detectable. Screening is of varying clinical use but uniformly profitable. In the US the marketers target young middle class women for testing as a business.
The main risk factor for breast cancer is age, and mammography is most effective in the over-50s, but the overall public perception is that it is a young women's disease, so the public health usefulness of mammography is limited. A recent survey in Australia also revealed this perception so some of the advertising here is being re-targeted. A public health system has better potential for making real use of screening.
Treatment is almost as messy. Batt provides an enthralling history of the evolution of standard treatments and their waxing and waning. As well, there is the matter of access to facilities or the abilities and interests of practitioners. The happy ending of the win-win scenario requires the best equipment, the most expert personnel, the best possible information all round and a version of the disease that the treatment is effective for. Real life often fails to cooperate.
Breast surgery effectiveness is increased by proper timing of operations relative to the woman's menstrual cycle. Does the surgeon remember to check, has the woman the nerve or the knowledge to request it, will a surgeon who fails to take account of timing find his performance statistics adversely affecting career prospects?
Success of cancer treatments is still measured by five-year mortality rates. This statistical limitation is even too narrow for the health bureaucrat these days. It's never been much chop for the individual victim; surprising numbers of people fail to be uncritically grateful for being simply alive. The consumer is getting picky and resentful about discovering adverse effects afterwards. Especially with breast cancers which are not medical emergencies, there is plenty of time to consider and plan. This may, of course, deprive the doctor of a shattered and unquestioningly compliant patient.
Cancer coverage/advertising in the media is not a rainbow. It is terror or miracle depending on whether it's for charity fundraising or selling a new wonder drug. Informed consent becomes a purely legalistic notion in this context. "Treatment partnerships" resemble more a token shareholding of an employee. The terror aspect impels a panic-driven dive into treatment, and the miracle aspect raises expectation beyond the capacities of mere medicine.
Then there is the cosmetic aspect. It is the patient's job to minimise discomfort felt by spectators when confronted by the deficiencies and limitations of treatments. As far as external appearance is concerned, one must assimilate. Reconstructive surgery, breast prostheses, wigs, make-up are all nice sidelines in themselves, as well as making sure women can't casually visually identify each other.
I have no doubt the cosmetic efforts are not intended to fool insurance companies or employers or producers of treatment regimes. Walking about casually displaying the limitations of the medical miracle is not an approved form of rugged individualism. The individual tragedy is of course immensely marketable, but a couple of hundred all at once looks as if it might become unmanageable.
Batt deals well with the inevitable conflict between the individual need to access whatever is available and the problems of longer term assessments to see if the methods used work in the short term, provide quality of life improvement or cause problems down the track. Fee-for-service medical systems designed around disease management are not designed to follow the complexities of developments over a lifetime. Treating patients and studying population outcomes are different industries. The clinical trial is the only thing on offer to try to blend the two.
Alternative measures, especially those the woman can use herself, such as diet, have the additional benefit of being patient directed, and the approach of healers restores the human interaction missing from radiotherapy treatment rooms. The single treatment paradigm — whether conventional or alternative — gets short shrift.
Batt has a great talent for diverting one's gaze from the individual peaks to the overall scenery, to connections rather than fences. I found her discussion of all those things that come under the heading of prevention meshing nicely. Prevention is the area where political activism is least tied to simply lobbying for information access and resource availability. Prevention involves attention to environmental factors, lifestyle changes, direction of research and who is running what in whose interest.
Overall it is a brilliant presentation. Sharon Batt describes her personal story, lots of other people's stories, medical/scientific technicalities, political inevitabilities, industrial imperatives, the development of an activist group and the lessons learned from AIDS activists. She emphatically rejects the personal guilt/it's your own fault scenario, whether pushed by aggro medicos or alternative egomaniacs. An unputdown-able thriller of a resource book. n