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UNION CITY, Ga., May 15 (Stateline) – When Felicia Mahone was 27, she felt her breast and found the mass.
Breast cancer has killed almost all women in her family – mother, two aunts and two relatives. However, her doctor reduced the lump, assuring her that everything would be fine.
For months, he continued his busy life. But she could not shake off the feeling that the bumper could be a tumor. So she saw another doctor at the Grady Memorial Hospital in Atlanta. There were more tests and more nervous waiting. Finally, the biopsy confirmed her deepest fears: stage 2 breast cancer. Inspired by the appearance of cancer without family support, she swore to God: Make me through this, and I will help others not to go through this alone.
Treatment progress has improved breast cancer survival rates among all women in the United States, but the difference between white and black women has increased: black women, such as Mahone, are 40% more likely to die from illness than white women, according to Centers for disease control and prevention.
No region has so many high-disparate states that have been grouped together as the South. Louisiana and Mississippi have the highest racial differences in breast cancer mortality. In both countries, excessive mortality among black women is more than 60%, according to the American Cancer Society. Alabama, Arkansas, Georgia, North Carolina, South Carolina and Tennessee have over 40% deaths.
"We automatically consider that when we get cancer, we are doomed to death and that it is a death sentence," Mahone said, referring to black women. "We are not talking about cancer, do not share it, do not accept hair loss and you do not want to look sick. Many other women live for years.
Although black and white women have similar rates of mammography and black women have a lower overall incidence of breast cancer, black women are more likely to die of the disease. Explaining inequality, an oncologist described the "perfect storm" of scientific and social forces.
One of them is that researchers have not developed advanced treatments for a series of aggressive tumors – known as triple-negative breast cancer – which are more often given to black women. The second is that recent achievements in cancer therapy for other types of tumors have yet to be fully demonstrated in minorities, in part because of the lack of diversity in these clinical trials.
And black women have described the sense of being discarded by the health system from doctors, nurses, and support groups who rarely look like them; and face further obstacles outside laboratories and hospitals – including lack of access to jobs, transit and health insurance. This marginalization of the Negroes is particularly pronounced in the south.
"It makes people, especially black women, who are busy and care about family members, do not want to waste time," says Alisha Cornell, who worked as a nurse in North Carolina. "The way we treat it makes us shameful or irrelevant."
Federal officials have taken certain steps to reduce this inequality from awareness-raising campaigns to the collection of long-term health information from minority communities. Alabama officials have determined that low-income women with a breast cancer diagnosis are automatically enrolled in Medicaid. Tennessee officials also used health information to identify districts with the highest disparities, and persuade hospitals to send mobile mammography clinics in those areas.
But, generally, the task of closing the gap has fallen on individual actors and institutions. One surviving Georgia, who has experienced a lack of culturally relevant support groups, has built an inclusive and diverse community of support for those who have breast cancer. In Louisiana, one doctor insisted not only to study breast cancer in Negroes – a long part of the research – but he invited researchers to partner with minority communities.
"We know the data and we know the statistics," said Dr Valerie Montgomery Rice, President and Dean of the Morehouse Medical School in Atlanta, in a recent speech on cancer disparity. "I hope that we will overcome inequalities and put our dollars into solutions that not only close these gaps, but lead to equity in health."
"Nobody looked like me"
Tiah Tomlin, a resident of Georgia who once worked in the pharmaceutical industry, thought that her triple negative diagnosis of breast cancer was a good thing. Then doctors broke the news that her specific cancer, which disproportionately affects black women, was one of the most severe types of cancers for healing.
Triple negative tumors do not have the most common types of hormonal receptors, estrogens and progesterone, and do not produce too much HER2 protein. Although her tumor was more aggressive, she could not benefit from targeted therapies developed for other forms of cancer.
Tomlin – diagnosed with 38, before the recommended age for routine mammographic examinations – eventually survived breast cancer. Her experience, however, opened her eyes on the institutional challenges faced by black women with breast cancer.
"It did not seem to me that my voice sounded like a patient," Tomlin said. "Disparities are real. I wanted to know why.
Black and white women receive mammography almost equally, but inequality of mortality increases after diagnosis of breast cancer.
Mya Roberson, an epidemiological researcher at the University of North Carolina-Chapel Hill, said it was impossible to single out one reason for post-diagnostic disparity, but she believes that this has to do with "the historical and today's political and social processes that pushed black women to the south to complete margins of society. "
Tomlin saw this game in support groups. During the fight against cancer, she sought out a community of women who shared her struggle. But in Atlanta, a city known as Black Mecca, the groups she found were often full of elderly whites who could not fully understand the unique challenges faced by younger black women.
In a review of women's studies of breast cancer diagnosis in 2014, researchers have identified women who have been adversely affected by their diagnosis – including emotional suppression and separation from behavior – "experienced increased levels of anxiety and poorer survival."
"I wanted to understand what other young women in color without children are experiencing," Tomlin said. "Nobody looked like me. They replied the best they could, but they were never a young brown girl and walked with those shoes.
Without it, Tomlin knew that the black people lacked the room to talk about how their medical profession, which distorts both white and males, remains unknown. More importantly, she was afraid that the stigma prevented women like her from sharing their diagnosis within their communities.
So she launched a support group on Facebook called My Year of Breast. In this group, women from all walks of life can help each other through barriers that are medical – pain, treatment, side effects – and non-medical – lack of transportation, childcare costs, families without support.
"People will not even tell their families they have breast cancer," says Cornell, a nurse from North Carolina. "They die because of the fear of going to the hospital, knowing that something is wrong, and that they are not able to afford it financially or to bind your family. With this fear, we are waiting. "
Diversity in clinical trials
At the annual conference of the American Cancer Research Association in 2019, health experts agreed on one of the main reasons for this disparity: lack of diversity in clinical trials. Despite advances in cancer research, Dr. Shafiq Khan, professor of biological science at Clark Atlanta University, says that treatments that were developed and approved were disproportionately tested on white people.
Since 2016, the Food and Drug Administration has approved four new breast cancer drugs. However, none of these clinical trials had more than 3% of black participants.
Dr. Lucio Miele, president of the Department of Genetics at the State University of Louisiana, said the lack of diversity in drug development has two far-reaching consequences for black women in the south. First, the latest anti-cancer therapy has not been fully proven to be effective in minority populations. Secondly, researchers have not developed advanced targeted therapies for triple negative breast tumors that disproportionately affect black women.
"It has always been thought that black women can not be recruited because they do not want to be," says Athena Starlard-Davenport, a professor of genetics at the University of Tennessee. "I found the opposite in Memphis. Black women say they want to help – and help future generations – but they do not always know where to go. "
During a study by the American Cancer Research Association, Melissa Davis, a genetic research assistant at the University of Georgia, called for more "pressure on biopharm to require more diversity" in clinical trials, so that these companies "do not have the luxury to say:" It's too difficult . "
However, Miele believes that the cancer research community shares the burden of recruiting various participants in clinical trials. He believes that cancer scientists must learn how to conduct research not only in laboratories, but also in color communities.
Until this happens, Beverly Tolliver Foringer, a senior clinical researcher at Bayer, says studies will remain tight in their findings. (Foringer noted that her views expressed her own opinion and did not speak on behalf of her employer.)
"As new technologies and precision medicine become available, there is another gap if we do not do something," said James Lillard, dean for research at the Morehouse School of Medicine.
Destigmatizing the disease
Faced with an alarming gap in mortality, southern advocates, researchers and practitioners are taking steps to help black women with breast cancer.
Dr Temeika Fairley, a senior medical scientist at the CDC's Department of Cancer Prevention and Control, says the headquartered in Atlanta has launched awareness-raising campaigns targeting younger black women who are facing breast cancer. Also, breast cancer information was made available to Hollywood scriptwriters, hoping to include information about health in the stories in a way that destigmatizes the disease.
Davenport, for his part, teamed up with community advocates in Memphis to collect saliva samples to develop a better understanding of the genetic factors that contribute to breast cancer in black women. And the University of Alabama-Birmingham trained a small army of black women – called "cancer women" – to spread information in their hometowns on how to get projections and the fact that state law allows women with low incomes to have breast cancer to be enrolled in Medicaid.
Michel Martin, professor of preventive medicine at the University of Tennessee, believes that treatment support is exactly what black women need. In a large study published in the Journal of Oncology Practice, she found that the use of a navigator patient made black people with cancer – including many breast tumors – five times more likely to complete a clinical trial.
After a strenuous set of treatments – bilateral mastectomy, chemotherapy, and breast reconstruction – Mahone beat her cancer nearly 11 years ago. From that moment on, she kept her vow to God. Now representing the patient, she leads other women through treatment, reminding of any advice she wanted her to give her: You have the right to ask questions. Get another opinion. Put yourself in the first place.
In one support group, Mahone shared her journey to fight breast cancer. The room was Beverly Jones, a grandmother from East Point, Georgia, who survived breast cancer, but now she had another tumor. Two connected later. Mahone began to call Jones; Sometimes just to apply, sometimes I offer transportation to the hospital.
Consoled by Mahone's constant presence, Jones is now feeling safer in sharing his story and spreading words about projections and treatment with his friends. The most intriguing fact is that, if it can not help someone, Mahone is just a phone call. https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2019/05/15/black-women-more-likely-to-die-of-breast-cancer-especially-in- south