Tag Archives: research

Black, Hispanic, Poor people wait longer for breast cancer treatment, experience more recurrences

In the USA, Black women have the highest mortality from breast cancer of any other group, despite the rate of diagnosis of breast cancer being highest in White women. Hispanic women have a lower breast cancer diagnosis incidence than either, but mortality rates are disproportionately high in Hispanic women also. Here are the CDC incidence and mortality statistics over time:

“Incidence rate” means how many women out of a given number get the disease each year. The graph below shows how many women out of 100,000 got breast cancer each year during the years 1975–2005. The year 2005 is the most recent year for which numbers have been reported. The breast cancer incidence rate is grouped by race and ethnicity.

For example, you can see that white women had the highest incidence rate for breast cancer. Black women had the second highest incidence of getting breast cancer, followed by American Indian/Alaska Native, Asian/Pacific Islander, and Hispanic women.

Breast ca incidence stats showing White women at highest risk

The graph below shows that in 2005, black women were more likely to die of breast cancer than any other group. White women had the second highest rate of deaths from breast cancer, followed by women who are American Indian/Alaska Native, Hispanic, and Asian/Pacific Islander.

Breast ca mortality stats showing Black women at greatest risk

A number of contributors to this disproportionate mortality have been proposed, including environmental toxin and pesticide exposure, more aggressive tumours, and later diagnosis. Most alarmingly, the mortality gap seems to be widening.

This week’s British Medical Journal (BMJ) has an important article today demonstrating one of the consequences of healthcare racism in the USA:

Impact of interval from breast conserving surgery to radiotherapy on local recurrence in older women with breast cancer: retrospective cohort analysis[1]

The researchers analysed national cancer records for 18,050 US women, aged 65 or older and otherwise non-disabled, who were diagnosed with early stage breast cancer during an eleven year period to 2002, and who received breast conserving surgery and radiotherapy, but not chemotherapy.

30% of the women in this study had to wait more than six weeks after their surgery before they could have radiotherapy. Delays greater than six weeks were associated with a modest but significant increase in local recurrence of the breast cancer.

The study also showed that there was a continuous relationship between radiotherapy delays and local recurrence; the sooner radiotherapy was started, the lower the risk of cancer recurrence, and this relationship was strong. This is concordant with previous studies.

So who was subject to these long, risky delays in treatment?

Sadly, the answer will not surprise you: Black women, Hispanic women, and poor women. Black women were almost 50% more likely to experience a longer than six week gap before radiotherapy treatment, and Hispanic women experienced a 30% increase in risk of delay.

The followup was only five years long in this study, and breast cancer tends to be a cancer that bides its time; the increase in risk (and in consequence mortality) may be greater, even much greater, with longer followup. In addition, as local recurrence risk tends to more common in younger women and this study focused on older women, the effect could be more pronounced in the total population of those with breast cancer. In addition, the study studied mostly White women, as Black women tend to get their cancers younger and have a decreased likelihood of receiving breast-conserving surgery and radiotherapy. In other words, this study was set up in a way that made it, in some ways, particularly difficult to find a significant difference in the effect they were looking at; the fact that they still found one means that the effect is likely to be really quite pronounced.

The accompanying BMJ editorial by Ruth H Jack and Lars Holmberg[2] goes on to suggest one possible model of healthcare delivery that might alleviate these delays:

One good example of how practices can be improved is the Rapid Response Radiotherapy programme in Ontario. This programme has drastically shortened waiting times for patients having palliative radiotherapy by restructuring the referral process so that many patients are treated on the same day as their consultation.9 Countries where disconnected systems are responsible for different aspects of treatment will find it more difficult to ensure that diagnosis, referral, and treatment are not subject to delay.


[1] Impact of interval from breast conserving surgery to radiotherapy on local recurrence in older women with breast cancer: retrospective cohort analysis
Rinaa S Punglia, Akiko M Saito, Bridget A Neville, Craig C Earle, Jane C Weeks.
BMJ 2010;340:c845; Published 2 March 2010,

[2] Waiting times for radiotherapy after breast cancer
BMJ 2010;340:c1007
Published 2 March 2010,

Conceptualizing disability

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

[aut_concept_chart.png]AnneC’s chart: Conceptualizing Autism, transcribed below[1. The chart reads in three columns, transcribed here:

* Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
* Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
* Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

* Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
* Cognitive & Perceptual Style: What characterizes the experience of being Autistic
* Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

* Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
* Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
* Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!


Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.


Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

[This post was originally posted at Hoyden About Town on April 27, 2009.]

There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.


Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

Continue reading Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”