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UNION CITY, GA. – At the age of 27, Felicia Mahone felt her chest and found a mass. Breast cancer had killed almost all the women in her family – her mother, two aunts and two cousins. Her doctor, however, minimized the size, assuring that everything would be fine.
For months, Mahone resumed her busy life. But she could not help thinking that the size could be a tumor. She saw another doctor at the Grady Memorial Hospital in Atlanta. There was more testing and waiting more nervous. Finally, a biopsy confirmed his deepest fears: stage two breast cancer. Tired by the prospect of facing cancer without the support of her family, she made a vow to God: Help me get through this, and I'll help others not to go through this alone.
Therapeutic advances have improved breast cancer survival rates in all US women, but the disparity between white and black women has increased: Black women such as Mahone have a 40% greater risk of breast cancer. dying of the disease that white women, according to the Centers for Disease Control and Prevention.
No region has as many states with large disparities grouped together as the South. Louisiana and Mississippi have the highest racial disparities in breast cancer mortality. According to the American Cancer Society, the excess mortality rate among black women exceeds 60%. Alabama, Arkansas, Georgia, North Carolina, South Carolina and Tennessee all have excess mortality rates above 40%.
"We automatically think that when we have cancer, we are condemned and it is a death sentence," said Mahone, referring to black women. "We do not talk about cancer, do not share it, do not kiss our falling hair and do not want to look sick. So many other women live however for years.
Although black and white women have similar mammography rates and the overall incidence of breast cancer in black women is lower, black women are more likely to die from the disease. In explaining the disparity, an oncologist described a "perfect storm" of scientific and social forces.
One of them is that researchers have not developed advanced treatments for a series of aggressive tumors, called triple negative breast cancer, that black women are at greater risk of contracting. Another is that recent advances in cancer treatments for other types of tumors have not yet been fully proven among minorities, partly because of the lack of diversity in these clinical trials.
And black women have reported feeling rejected by a health system of doctors, nurses, and support groups that seldom resemble them; and face other barriers outside of labs and hospitals – including lack of access to jobs, public transportation, and health insurance. This marginalization of black women is particularly prevalent in the south.
"It prevents people, especially black women, who work and provide care for family members from not wasting their time," said Alisha Cornell, who worked as a nurse in North Carolina. "The way we are treated makes us feel ashamed or unimportant."
Federal officials have taken steps to reduce this disparity, from awareness campaigns to long-term health data collection to minority communities. Officials in Alabama have asked that low-income women with breast cancer be automatically enrolled in Medicaid. And Tennessee officials used health data to identify counties with the highest disparities and convinced hospitals to send mobile mammography clinics to these areas.
But on the whole, the task of bridging the gap lies with individual actors and institutions. A survivor from Georgia, who has experienced a lack of culturally appropriate support groups, has created an inclusive and diverse support community for people with breast cancer. In Louisiana, a doctor attempted not only to study breast cancer among black women – a long under-researched area of research – but also urged researchers to partner with minority communities.
"We know the data and statistics," said Dr. Valerie Montgomery Rice, president and dean of the Morehouse School of Medicine in Atlanta, in a recent speech on cancer disparities. "I hope we are going beyond disparities and putting our budget at the service of solutions that not only fill these gaps, but also lead to health equity."
"Nobody looked like me"
Tiah Tomlin, a resident of Georgia who previously worked in the pharmaceutical industry, first thought her diagnosis of triple negative breast cancer was a good thing. Then her doctors announced that her specific cancer, which disproportionately affects black women, was one of the most difficult cancers to treat.
Triple negative tumors do not have the most common types of hormone receptors, estrogen and progesterone, and do not produce too much HER2 protein. Although her tumor tends to be more aggressive, she could not benefit from targeted therapies developed for other forms of cancer.
Tomlin – who had been diagnosed at the age of 38, before the age recommended for routine mammography screening – finally survived breast cancer. Her experience has, however, opened her eyes to the institutional challenges faced by black women with breast cancer.
"I did not think my voice was being heard as a patient," said Tomlin. "The disparities are real. I wanted to know why. "
Black and white women undergo mammograms at almost equal rates, but the mortality gap grows after the diagnosis of breast cancer.
Mya Roberson, an epidemiology researcher at the University of North Carolina (Chapel Hill), said it was impossible to isolate a single reason for the disparity between diagnoses, but was linked to "political processes and social pushed black women from the South to the margins of society.
Tomlin saw this being played in support groups. During her fight against cancer, she sought a community of women sharing her struggle. But in Atlanta, a city known as Black Mecca, the groups she discovered were often made up of older white women who did not fully understand the unique challenges faced by younger black women.
In a 2014 study of studies involving women with breast cancer, the researchers noted that women who were negatively managing their diagnosis – including emotional suppression and behavioral disengagement – had "experienced an increase level of distress and poorer survival ".
"I wanted to understand what other young women of color without children were experiencing," said Tomlin. "Nobody looked like me. They answered as best as they could, but they had never been a brunette girl and they walked in these shoes. "
Without this, Tomlin knew that black women did not have enough space to talk about how their concerns were being ignored by a medical profession that inclines men and women. More importantly, she feared that stigma would prevent women like her from sharing their diagnosis in their respective communities.
So she created a Facebook support group called My Breast Years Ahead. In this group, women from all walks of life can help each other to overcome the medical obstacles – pain, treatment regimes, side effects – and not medical – lack of transportation, childcare costs. children, disadvantaged families.
"People will not even tell their families that they have breast cancer," said Cornell, the nurse from North Carolina. "They are dying for fear of going to the hospital, discovering that something is wrong and not being able to afford it financially or putting their family in a bind. With this fear, we wait.
Diversity in clinical trials
At the 2019 annual conference of the American Association for Cancer Research, health experts agreed on one of the main reasons for this disparity: the lack of diversity in clinical trials. Despite the progress of cancer researchers, Dr. Shafiq Khan, a professor of biological sciences at Clark Atlanta University, said treatments developed and approved were disproportionately tested on whites.
Since 2016, the Food and Drug Administration has approved four new drugs for breast cancer. However, none of these clinical trials had more than 3% of black participants.
Dr. Lucio Miele, chair of the genetics department at Louisiana State University, said the lack of diversity in drug development has two serious consequences for black women in the South. First, the latest cancer therapies have not proven themselves to the minorities. Second, researchers have not developed targeted therapies for triple-negative breast cancer tumors that disproportionately affect black women.
"It has always been thought that black women could not be recruited because they did not want to be," said Athena Starlard-Davenport, professor of genetics at the Center's Health Sciences Center. 39, 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. "
Melissa Davis, an assistant professor of genetics at the University of Georgia, called for more "pressures on biopharmaceuticals to demand more diversity" in clinical trials, so these companies "do not have the Luxury of saying: "It's too difficult." "
However, Miele believes that the cancer research community shares the burden of recruiting more diverse clinical trial participants. He is convinced that budding cancer scientists must learn to conduct research not only in laboratories but also in communities of color.
Until that happens, Beverly Tolliver Foringer, Senior Clinical Research Associate at Bayer, said the results of the studies would remain limited. (Foringer noted that her opinions expressed her own opinion and that she was not speaking on behalf of her employer.)
"As new technologies and precision medicine become available, there will be another gap if we do nothing," said James Lillard, associate dean of research at the Morehouse School of Medicine.
Destigmatize the disease
In the face of alarming mortality gap, southern advocates, researchers and practitioners are taking action to help black women with breast cancer.
Dr. Temeika Fairley, a health scientist with CDC's Division of Cancer Prevention and Control, said the Atlanta-based agency has conducted awareness campaigns targeting young black women at risk for breast cancer . They also made breast cancer information available to Hollywood screenwriters, with the hope that they could incorporate health information into scenarios to de-stigmatize the disease.
Davenport, for its part, has partnered with advocates in the Memphis community to collect saliva samples to better understand the genetic factors that contribute to breast cancer in black women. And the University of Alabama in Birmingham has formed a small army of black women – nicknamed the "ladies of cancer" – to spread information to their hometowns on how to get to know them. to get screenings and the fact that the law in force allows to be registered to Medicaid.
Michelle Martin, a professor of preventive medicine at the University of Tennessee's Health Sciences Center, believes that support during treatment is exactly what black women need. In a large study published in the Journal of Oncology Practice, she discovered that using a patient navigator made blacks suffer from cancer – including many people suffering from a breast tumor – five times more likely to carry out a clinical trial .
After a series of grueling treatments – bilateral mastectomy, chemotherapy and breast reconstruction – Mahone overcame her cancer almost 11 years ago. From that moment, she held her vow to God. Now a patient rights advocate, she guides other women throughout the treatment, reminding everyone of the advice she would have liked: You have the right to ask questions. Get a second opinion. Put yourself first.
At a support group, Mahone shared her journey against breast cancer. In the room was Beverly Jones, a grandmother from East Point, Georgia, who had survived breast cancer but now had another tumor. The two connected next. Mahone started calling Jones; sometimes just for recording, sometimes to offer a ride to the hospital.
Comforted by the constant presence of Mahone, Jones now feels more comfortable telling his story and spreading the word about testing and treatment with his friends. The most comforting is the fact that, if she can not help anyone, Mahone only has to phone.
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