Black Cancer Matters – Susan Gubar, The New York Times

I started following Susan Gubar’s columns during my cancer journey and continue to find them interesting. This column is no exception with its focus on how African Americans are disproportionately affected by cancer with higher mortality rates:

Like many people, I attribute my cancer to bad luck. So the feature-length documentary “Company Town” shocked me. It contends that the economic consequences of racial discrimination increase cancer risk. Watching the movie led me to realize that wretched statistics on cancer mortalities are also linked to racial inequalities. Black cancer should matter, but has it mattered in the past and will it matter in the future?

Company Town,” released in 2016 and available March 20 on iTunes, was co-directed by Natalie Kottke-Masocco and Erica Sardarian. It opens with gospel vocalists singing the words “run down to the river,” a deeply ironic injunction in Crossett, Ark., a setting where a Georgia-Pacific paper and chemical plant — owned by the billionaire Koch brothers — stands accused of polluting local waters. The movie depicts rural people dependent for a livelihood on an industry that they believe is sickening them by contaminating their environment. Most of the men and women dealing with cancer in the area are African-Americans.

We see David Bouie, a Baptist minister who worked in the facility for 10 years, pointing out the houses on his lane. “It’s all around us … cancer, cancer,” he says. “Door-to-door cancer.”

It is difficult to establish a causal connection between hazardous wastes and cancer; however, “Company Town” presents a formidable case. The air, earth and water of Crossett, with its population of about 5,500 people, have been spoiled by harmful fumes and vapors, by chemicals discharged into unlined basins, by fiber products and ash hidden in fields beneath a few inches of dirt and behind fences that do not solve the problem of carcinogens leaching into creeks and wells. Congregants in Pastor Bouie’s church speak as or about the children and adults dying in what amounts to a lethal cancer cluster.

Pastor Bouie organizes his neighbors with the help of a woman who serves as the Ouachita Riverkeeper and a whistle-blower who had been a safety coordinator in the mill. Together, they gain the attention of representatives of the Environmental Protection Agency and the Arkansas Department of Environmental Quality. At hearings, a number of these officials proffer placating but prevaricating reassurances.

Somehow a few days before the arrival of one set of bureaucrats, the smoke from the Georgia-Pacific facility decreases and the air smells better. After the meeting, the noxious plumes reappear.

Government spokespeople, the Koch brothers and the supervisors of Georgia-Pacific dispute the directors’ argument and evidence. Yet “Company Town” mounts a passionate protest on behalf of overlooked victims of corporate negligence and greed.

By putting into play the words “race” and “cancer,” the film motivated me to ponder the impact of race on cancer outcomes nationally — and therefore disentangled from local ecological factors. The big picture is grim.

A 2016 report of the American Cancer Society states that the “five-year relative survival is lower for blacks than whites for most cancers at each stage of diagnosis.” African-American men, for example, are twice as likely to die from prostate cancer. Experts continue to debate why, even as many ascribe this scandalous phenomenon to inequalities in access to screening and treatment.

In women’s cancer, the mortality gap has widened. According to the 2016-18 report on Cancer Facts and Figures for African-Americans, “despite lower incidence rates for breast and uterine cancers, black women have death rates for these cancers that are 42 percent and 92 percent higher, respectively, than white women.” Investigators connect the ghastly numbers to the usual socioeconomic discrepancies but also to biological differences in the malignancies of black women.

With regard to breast cancer, is the mortality gap related to a greater percentage of black women than white women contending with an aggressive form of the disease that lacks estrogen receptors?

Dr. Otis Webb Brawley, the chief medical officer of the American Cancer Society, rejects an explanation based on “biological difference,” pointing instead to dietary disparities.

Disadvantaged Americans consume more calories and carbohydrates, “the sort of food that is available in poor areas of inner cities,” Dr. Brawley writes in his book “How We Do Harm.” Greater body weight means African-American girls menstruate earlier and the number of uninterrupted menstrual cycles increases the risk of breast cancer: “The black-white gap in the onset of menstruation and body weight has dramatically widened, which means that the disease disparities will widen also.”

Dr. Brawley quotes an all-white study in Scotland that “found evidence pointing to a correlation between social deprivation and incidence of breast cancer that lacks estrogen receptors.” In addition, he cites the insight of his friend Dr. Samuel Broder, a former director of the National Cancer Institute: “Poverty is a carcinogen.”

Given the mortality discrepancies, it is disturbing that African-Americans are underrepresented as subjects in cancer research, as are other minorities. According to research by Dr. Narjust Duma of the Mayo Clinic, only 6 percent of participants in clinical trials are black, although African-Americans make up approximately 12 percent of the population; Hispanics amount to 3 percent of participants, although they make up about 15 percent of the population.

“If our government doesn’t fix this,” one protester in “Company Town” says, “then I don’t know what kind of government they are.” If we don’t fix this, I chime in, what sort of people are we?

via Black Cancer Matters – The New York Times

ICYMI: In Cancer Trials, a Lopsided Shot at Hope for Minorities – The New York Times

Another area where ensuring diversity is important:

Like a man on a flying trapeze, K.T. Jones has leapt from one medical study to another during his 15-year struggle with cancer, and he has no doubt that the experimental treatments he has received have saved his life.

Mr. Jones, 45, has an aggressive type of Hodgkin’s lymphoma that resists the usual therapies. At the start of his most recent clinical trial, his life expectancy was measured in months. That was more than three years ago. He received a drug that helped his immune system fight cancer — a type of immunotherapy, the hottest area in cancer research and treatment.

“I’ve been over 12 months now with no treatment at all,” he said. “I walk half-marathons.”

Mr. Jones is one of many patients who have benefited from lifesaving advances in immunotherapy. But he’s an outlier: He is African-American. As money pours into immunotherapy research and promising results multiply, patients getting the new treatments in studies have been overwhelmingly white. Minority participation in most clinical trials is low, often out of proportion with the groups’ numbers in the general population and their cancer rates. Many researchers acknowledge the imbalance, and say they are trying to correct it.

Two major studies of immunotherapy last year starkly illustrate the problem. The drug being tested was nivolumab, a type of checkpoint inhibitor, one of the most promising drug classes for cancer. In both studies, patients taking it lived significantly longer than those given chemotherapy.

In the first study, of 582 patients with lung cancer, 92 percent were white. Three percent were black, 3 percent were Asian and 3 percent were listed as “other.” In the second study, of 821 people with kidney cancer, 88 percent were white, 9 percent Asian and just 1 percent black.

According to 2015 census figures, whites make up 77 percent of the United States population, blacks 13.3 percent and Asians 5.6 percent.

A 1993 law requires that all medical research conducted or paid for by the National Institutes of Health include enough minorities and women to determine whether they respond to treatment differently than other groups. Minority enrollment in its studies was about 28 percent in clinical research and 40 percent in Phase III clinical trials in 2015, the N.I.H. said.

But the N.I.H. paid for only about 6 percent of all clinical trials in the United States in 2014, and those it does not support do not have to adhere to its rules. The lung and kidney studies of nivolumab, for instance, were paid for by the drug’s maker, Bristol-Myers Squibb. Researchers say such studies, geared toward getting a drug approved for new uses, are often done quickly, and minority patients may be left out because it can take longer to find and enroll them.

One obstacle, researchers say, is that people in minority groups tend to have lower incomes and less education, and therefore less awareness of medical studies and how to find them. Many live in areas that do not have easy access to a major cancer center. Moreover, minority patients with cancer are more likely to have other, poorly controlled chronic diseases like diabetes that may make them ineligible for studies, according to Dr. Julie R. Brahmer, from the Johns Hopkins Kimmel Cancer Center.

 

Source: In Cancer Trials, a Lopsided Shot at Hope for Minorities

First Nations chemo case ruling amended to include child’s well-being

A welcome development:

The clarification of a controversial court ruling that allowed the mother of an 11-year-old First Nations girl to pull her out of chemotherapy says the best interests of the child are “paramount,” but traditional medicine must be respected.

It is a “significant qualification” of Ontario court Judge Gethin Edward’s November 2014 ruling, according to one legal expert, which means the child’s well-being has to be balanced against rights to traditional medicine.

Nick Bala, a law professor at Queen’s University, says the clarification “walks back” the original ruling that put First Nations constitutional rights as the major factor to be considered in the care of the child.

The clarification, read in a Brantford, Ont. court Friday afternoon, comes with news the child restarted chemotherapy in March when the cancer returned after a period of remission.

The family’s lawyer, Paul Williams, said the clarification prevents the previous ruling regarding aboriginal rights as being interpreted as an ‘absolute.’ The child’s best interests must also be considered. (Jeff Green/CBC)

The joint submission from the auditor general of Ontario, as well as counsel for the Six Nations, the child’s family and McMaster Children’s Hospital, was celebrated as a collaborative conversation rather than a confrontation among the parties involved.

First Nations chemo case ruling amended to include child’s well-being – Latest Hamilton news – CBC Hamilton.

Cancer survivors income falls $5K a year, StatsCan finds

Not surprising, and mirrors my experience, although I benefitted from good government employee benefits that helped those with catastrophic illness (the government planning to roll these back).

While in the end, my particularly aggressive form of cancer made returning to work a non-starter, most people following cancer diagnosis and treatment of any kind also tend to shift their priorities towards family and friends, with career advancement becoming secondary.

While I wouldn’t go so far as the Canadian Cancer Society – we often make choices between income and other priorities – there is need to examine whether we have the right balance between benefits for those with catastrophic illness and the overall cost to governments and employers:

On average, cancer survivors earned $5,079, or 12.1 per cent, less one year after diagnosis than their counterparts who were never diagnosed with the disease. Cancer lowered the probability of working in the first year after diagnosis by three percentage points on average compared with the other group in the sample.

The effects continued but lessened in the second and third years after diagnosis.

Employees may work fewer hours after cancer treatment as they recover. Others may switch jobs to something less stressful and perhaps lower paying.

“We find cancer patients are forced into situations where they have to choose between their treatment or their income, and thats not acceptable,” said Lauren Dobson-Hughes of the Canadian Cancer Society.

The society would like to see an increase in sickness benefits beyond 15 weeks and an increase in the amount thats provided beyond 55 per cent of salary. Theres also currently a two-week waiting period for EI, which Dobson-Hughes said isnt sustainable for many patients.

Cancer survivors income falls $5K a year, StatsCan finds – Health – CBC News.

Cancer fight puts focus on lack of minorities on stem-cell donor lists

Periodically, articles emerge regarding the need for more donors from minority communities (e.g., Asian British Columbians less likely to be organ donors). This latest, thanks to a social media campaign launched by Mai Duong, a leukaemia patient in Montreal, pertains to the need for stem cell donations, used to transplant new immune systems to patients with a range of blood-related cancers.

Having benefitted from a stem cell donation to treat my lymphoma, and without the challenges of finding a donor given my European ancestry (my donor turned out to be a nice young German man), I can only urge those of you of whatever extraction to consider donating stem cells. The Canadian link is OneMatch Stem Cell and Marrow Network, in Quebec, Héma-Québec:

But Duong, 34, has discovered that locating the right person can be a needle-in-a-haystack challenge, particularly for those who are from a non-Caucasian background.

“This is a global problem,” Duong, who is of Vietnamese origin, said in an interview from her room at Montreal’s Maisonneuve-Rosemont Hospital.

“We can’t do a scavenger hunt every time someone has this type of problem.”

…. Canada Blood Services, which manages the stem cell and marrow registry outside Quebec, says 340,837 people are currently registered in the rest of the country. Of them, 71 per cent are Caucasian, with the rest qualifying as “ethnically diverse” or of unknown origin.

Hema-Quebec, the organization that manages the province’s list, says about three per cent of the 47,000 stem-cell donors are of Asian descent and only a fraction of those are Vietnamese. The ratios are similar among international donors and Vietnam doesn’t have a registry of its own.

Cancer fight puts focus on lack of minorities on stem-cell donor lists.

Review of Living with Cancer: A Journey

Nice review in our community newspaper of my book, Living with Cancer: A Journey. My other identity that unfortunately, too many of us, or those close to us, have.

Glebe Report Review