Category Archives: poverty

Photos from Mental Health Institutions in Indonesia

The Big Picture, one of my very favorite photo blogs, in which the Boston Globe collects a set of stunning photos on a single topic or theme, recently had a series on Indonesia. Two of the photos especially caught my eye, as they depicted scenes from mental health institutions in the country.

In a room with vivid green walls and white tiled floor, a person is seen from the knees down is chained to a wooden pole with a metal link chain. The person is barefoot, wearing dingy jeans with a tear in the knee.

The leg of a patient is chained to a post at the Galuh foundation for people with mental health conditions on February 10, 2010 in Bekasi, Indonesia. Belief in black magic is commonplace in Indonesia, where there is much ignorance over mental health issues, with traditional healers instead consulted for apparent sufferers. 2007 figures suggested that 4.6% of the nation suffered from serious mental disorders in a country whose population now stands at around 230 million, with only around 700 psychiatrists across 48 psychiatric hospitals available to help treat those affected. (Ulet Ifansasti/Getty Images) #

A shirtless boy, thin with protruding ribs, turns his head to the side as he is sprayed with a water hose. Behind him are walls of broken concrete.
A shirtless boy, thin with protruding ribs, turns his head to the side as he is sprayed with a water hose. Behind him are walls of broken concrete.

A patient named Yoyo is bathed at the Galuh foundation for mental patients in East Bekasi near Jakarta on February 11, 2010 in Bekasi, Indonesia. With limited mental heatlth care available in Indonesia, sufferers usually turn to black magic and are taken to “dukuns” or healers who are believed to have magical powers. (Ulet Ifansasti/Getty Images) #

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,
doi:10.1136/bmj.c845

[2] Waiting times for radiotherapy after breast cancer
BMJ 2010;340:c1007
Published 2 March 2010,
doi:10.1136/
bmj.c1007

Kettleman City, California: Low Income, Cleft Palates, and “Nothing Unusual”

It’s a small news story which hasn’t been well reported, and I might have missed it except that I happened to stumble upon it in 2009 and then I started following it. Starting in 2007, 6 babies out of 20 born in an 18 month period in Kettleman City, California were born with cleft lips or cleft palates. Some environmental activists started to cry foul, pointing to a hazardous waste facility near Kettleman City as a possible source of contamination which might be linked with the seemingly high rate of cleft lip and palate.

Cleft lip and/or palate occur in about one in every 700 births. Six out of 20 babies sounds unusual, right? Wrong, according to the California Department of Public Health, which says: “They’re all different and they suggest, or it doesn’t really suggest that they have a common cause. Because in general, we think each kind of birth defect has a different set of causes together that may be responsible. (source)”

This may well be true. Sometimes clusters do happen randomly and there are no causes. And it can be difficult to pin down all of the potential causes and environmental factors. But when you have a town with a hazardous waste facility as a major employer and unusual things start happening, it seems like there might be a correlation which is worth investigating. Even though the town is small. Even though the hazardous waste facility has a lot of political clout.

And do environmental exposures necessarily cause identical changes in fetal development? If being “all different” is an argument to rule out an environmental contaminant, why is it that babies born to women who took thalidomide during pregnancy were also “all different”? Certainly, they shared commonalities, but they were also very distinct from each other; taking thalidomide during pregnancy didn’t guarantee only one outcome. Seeing cleft lips and/or palates in 6/20 babies born in an 18 month period would seem to suggest that there is a common thread linking those mothers and that there is a chance that a cluster phenomenon is occurring.

The thing about Kettleman City is that it’s troubling, demographically. Almost 93% of the population identifies as Hispanic or Latino. Roughly 44% of the population lives below the poverty line. There are some serious income disparities; there’s a $16,619 median income for men versus a $10,179 median income for women. It’s a poor, primarily Spanish speaking community.

And that makes alarm bells ring in my head, because if there’s one thing California is very, very good at, it’s ignoring the needs and concerns of low income Californians. Even if the cleft lips and palates aren’t being caused by the Waste Management facility, I think that they are clearly a cause for concern and that more investigation might be a good idea. If it’s not the Waste Management facility, there might be other environmental factors going on. If this kind of thing was happening in an area like Marin, which is predominantly white, English speaking, and wealthy, there would be an uproar accompanied with demands to find out what is going on, and why.

Of course, Marin would also never house a hazardous waste facility, because there are numerous low income communities in California upon which such facilities can be foisted. In fact, some communities will welcome the extra income and the presence of a large employer who does things like donating to the schools. Low income communities in California literally compete for toxic waste from wealthy California communities.

As abby recently pointed out, “poverty has the greatest negative impact on health.” In her post, she discussed the increased risk of environmental exposure to harmful substances for people living in poverty, and that’s really highlighted across the United States, not just in California. The dirty but necessary things we have in this country, like industrial facilities, hazardous waste dumps, manufacturing facilities, and so forth, are predominantly located in poor communities.

In the Bay Area, for example, the refineries are in Richmond, not Berkeley or San Francisco or Marin, all wealthier communities. The manufacturing facilities in Oakland happen to be in Oakland’s poorest communities, not up in the Oakland Hills, where wealthy residents live. Set up an epidemiology map and overlay it on a map of communities coded by income and the way they match up is nothing short of eerie. If you are poor in the United States, you are more likely to be living close to a source of environmental toxins because it is all you can afford.

I lived on top of a Superfund Site in the Bay Area, and now I live a block away from a severely contaminated former industrial site. I wipe dioxin-laden dust off my bookshelves every day because it blows and blusters in through every crack in my house. I didn’t live in either of these sites by choice, I live in them because it is what I can afford. If the choice is between living on top of ground contaminated with dioxins, PCBs, lead, and radioactive materials and living nowhere at all…what would you choose?

And when people in these communities start to get sick, when clusters do start appearing, it is ignored. Or people are told that they knew about the danger (not true) and that they could have avoided it (by what, moving? Where?) and that the community is responsible for cleaning it up (with what money?) and sending the toxic materials somewhere else (another, poorer community, perhaps?). My neighboring town of Willits, heavily contaminated with chromium by Remco, fought for years to address the issue until the cause was taken up by Erin Brokavitch.

For every Erin Brokavitch in the world, there are 100 other towns which need help. Like Sierra Vista, Arizona, where there’s a leukemia cluster baffling and infuriating local residents while government representatives insist that there are no environmental causes. What’s happening in Kettleman City is repeated at varying degrees of scale all over the United States and it’s rarely reported or discussed.

Newsflash: Poverty is Bad for Your Health

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also,  PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

Disability in Rwanda

Nobody knows how many people with disabilities there are in the world. In doing some basic research, I saw estimates ranging from 300 to 600 million. This is partly a definitional issue – it’s hard to get people to agree what “disabled” means – but mostly is because nobody has ever tried to figure it out. What is clear is that most people with disabilities live in poverty. According to the UN, two-thirds of people with moderate to severe disabilities live below the poverty line. Only two percent of people with disabilities in developing countries have access to basic services.

Take, for example, Rwanda, where poverty is both a cause and an effect of disability. It’s a gorgeous country and home to the rare mountain gorillas. It also had a massive genocide in 1994 during which an estimated 800,000 people were killed – an eighth of the population. Currently, organizations estimate that about 300,000 of the 10 million residents have disabilities. Nearly ten percent of the disabled population has had one or more limbs removed – either hacked off by machete or destroyed by mines, bombs, and bullets during the genocide. The genocide also caused resources like food to be diverted and scarce, resulting in malnutrition, which in turn has caused disability. Despite all that, the genocide is not the major cause of disability in the country – poverty, disease, accidents, lack of medical care and congenital causes are more common.

It’s also one of the poorest countries in Africa. “In 2006, 56.9% of the total population were living below the poverty line and 37.9% were extremely poor. In rural areas about 64.7% of the population were living in poverty… 28% of the rural population was food-insecure and 24% was highly vulnerable to food insecurity.” Poverty is more likely in households headed by females (which are more common after many men were killed during the genocide) and especially in households headed by individuals with HIV/AIDS.

Unfortunately, attitudes towards people with disabilities in Rwanda are not positive. From a report on disability policy in Rwanda:

‘Social exclusion’ is not a concept that is widely used in Rwanda, but disabled people are both actively and passively excluded in Rwandan society. Rwandans do not value disabled people. Disabled people are seen as objects of charity. They are underestimated and overprotected, and their potential and abilities are not recognised. Disabled children are seen as a source of shame and often hidden away. Name-calling is common. Disabled women find it difficult to get married. Disabled people suffer discrimination in employment.
Disabled family members are sometimes passed over in matters of inheritance. Land and assets are given to others who are deemed to be able to make better use of them, thus leaving the disabled person dependant on family to support them and removing the opportunity for them to lead independent lives. Negative attitudes are particularly strong towards those with severe disabilities, people with intellectual and learning disabilities, blind and deaf people.

Another organization reports that “disabled people are commonly addressed by their disability rather than their real name.”

Rwanda is making significant economic progress since the genocide, with yearly economic growth twice as high as what’s usually expected for a developing nation. It is described by Fortune Magazine as “a business-friendly nation that wants to become a model of private sector development in Africa.” The United Nations awarded Kigali, the capitol city, “the Habitat Scroll of Honour Award for many innovations in building a model, modern city symbolized by zero tolerance for plastics, improved garbage collection and a substantial reduction in crime.”

But it’s unlikely that this economic development will benefit Rwandans with disabilities. The country’s first Economic Development and Poverty Reduction Strategy Plan “had no specific reference to disability or how to include people with disabilities in the process.” While there has been significant foreign investment in the country, that impacts only the urban corporate portion of Rwanda. When nine of every ten adults are subsistence farmers in rural areas, those incoming dollars are extremely unlikely to reach the hands of most of the country’s inhabitants. The countryside isn’t appealing to private investment, especially when there’s no health stability. Any job development programs in rural areas are run by NGOs operating on donations and the products they create ($85 silk-mohair knitted scarves for Whitney Port from MTV!) are marketed based on pity for Rwandans. Those are not sustainable jobs or industries and will not create long term employment for those in rural areas. The most viable avenue for rural economic development has been through microloans through organizations such as Kiva.

Even these limited opportunities for work are unlikely to be available to people with disabilities. PWDs are unlikely to be awarded microloans to run their own businesses and are rarely employed by the NGO projects. As one research report observed:

Disabled people are generally excluded from development activities. They are often extremely poor and are continually in ‘survival mode’, so they literally cannot contribute to development activities, either materially or in terms of their time. They are largely excluded from micro-credit programmes because they lack assets as collateral and are seen as a bad risk. Disabled informants for this study said that they were often not told about development activities in their communities in the first place and when they tried to get involved, they were deliberately excluded.

It’s clear that colonization and ongoing meddling from the Western world has done nothing but contribute to and exacerbate problems like the genocide, so the solution isn’t to charge in there and tell Rwanda what policies it should have and how to run things. They were colonized by Belgium until 1960, for goodness sake. So I can’t say I know what the solution is, and the only advocacy action I can think to take is to encourage/pressure NGOs to be inclusive of PWDs when designing and implementing development projects. There’s a number of disability organizations in Rwanda and I think we’ll have to rely on them to do this work. Some lists of the organizations can be found in this report and in a project report from Handicap International.