Commentary Health Systems

Scars as Stories: Breast Cancer in the Black Community

Renee Bracey Sherman

Breast cancer advocates see the Affordable Care Act as a huge win for Black women, for whom breast cancer is the second most common cancer. But improving access won't address our fear and the stigma associated with illness and poverty; stories of survival can.

This piece is published in collaboration with Echoing Ida, a Strong Families project.

The Affordable Care Act has expanded access to services for 7.3 million in the Black community. It is giving many people access to a variety of preventive services like mammograms, breastfeeding support, and prenatal care, as well as coverage for issues formerly considered pre-existing conditions. This is huge for breast cancer advocates who have long been encouraging early detection and screening, and has the potential to positively affect breast cancer rates among Black women, for whom breast cancer is the second most common cancer. But improving access wasn’t the only problem facing Black women with regard to breast cancer survival—we’ve allowed our fear and the stigma associated with illness and poverty to silence our stories, and that silence is literally killing us.

Some survivors understand the importance of sharing their experience and scars to help address the stigma associated with health care. Deborah Reid knows this all too well. Reid, a 58-year-old dance instructor with Stage 3 breast cancer, said she’d avoided mammograms for eight years due to their unpleasantness. In an interview with the New York Times for a recent article on the racial gap in breast cancer among Black women in the South, Reid explained that hearing someone else’s story and sharing hers became her healing mechanism. Reid was inspired to take care of herself after seeking counseling from a reverend, a 12-year survivor of colon cancer. Now, she educates others about breast cancer by showing them her own breast and talking about the symptoms. “I revealed my breast so they could see it. It was swollen. I made them touch it. It shocked them,” she said. After sharing her story with her dance troupe, Reid says all the women have either had or are going to get mammograms.

It’s the silence that has allowed my own ignorance to fester. I was six when I watched my mother and aunt, both nurses, change the dressing on my grandmother’s absent breast. Despite the years of pain and suffering cancer must have caused my grandmother, and the ripple effect it no doubt had on my family, in more than 20 years, we’ve only had two conversations about our family and the disease. Even with a family of medical professionals, discussions of generational health in our family are awkward. I rarely have an answer when my provider asks about my family history—I remind myself to ask my family, but because the pain of loss is too strong, their answers are often only a sentence long.

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My grandmother had a lumpectomy to remove the lump they found in her breast, and later a full mastectomy. My mother said that while growing up, money was tight, and my grandmother only took the family to the doctor when something was wrong. Raised in Mississippi with little education, my grandmother was taught that you live through pain, and seeing the doctor was for emergencies—not as a proactive measure. And while I have health insurance and go for my annual checkups, I haven’t talked to my doctor about my risk for breast cancer, because the stories and need haven’t been there. Only now do I realize the gravity of her illness and the potential for it in my own body, and my mother’s as well.

When our families don’t talk about issues, when women hide their stories, we don’t know to be on the look out for them—which can mean the difference between longer lives and death. With breast cancer, this is critical.

Early detection, a key factor in fighting breast cancer, is particularly important in the Black community. We are twice as likely to be diagnosed under the age of 35 as our white peers, and we often have denser breasts, making cancer harder to detect in mammograms and requiring further testing. Black women of all ages have higher mortality rates from breast cancer, as well as an increased incidence of triple negative breast cancer (a more aggressive and less treatable form of the disease). Twenty percent of Black women on Medicaid are diagnosed with breast cancer late, in Stage 3 and 4, compared to only 11 percent of their white counterparts. Though the aforementioned opportunities through the Affordable Care Act may improve these statistics, if we don’t know our risk or talk about our health, access and policy changes mean nothing.

It’s true, addressing the barriers and knowing the statistics are steps in the right direction—we have to know what we’re dealing with. But with it, we need to create a culture in our community where it is embraced, even encouraged and normalized, to talk about our bodies. There’s such a stigma associated with talking about health and illness, especially within marginalized communities and families in poverty. The stigma associated with illness and poverty perpetuates a scarred and tired narrative, keeping us silent and invisible from a society that devalues our lives. Racist and classist stereotypes incorrectly assume that we are unable and unwilling to care for ourselves, when in reality the resources aren’t equitably in reach. When we share our whole selves, we give others the opportunity to relate to our lives and those who mean to judge no longer have the power to deny our humanity or ignore our lived experiences.

Research shows that stories have the power to improve life outcomes. A 2011 trial with 300 African-American patients found that listening to personal stories “helped control high blood pressure levels as effectively as the addition of more medications.” Over a three-month period, patients who watched DVDs of personal experiences, versus those who watched informational videos, had, on average, lower blood pressure. Hearing the experiences of someone one can relate to helps to build a relationship and create trust, particularly in a medical setting. “Telling and listening to stories is the way we make sense of our lives. That natural tendency may have the potential to alter behavior and improve health,” Dr. Thomas K. Houston, lead author of the study, told the New York Times.

“I’m not a weak person. I decided to be a messenger,” Reid told the Times on her new calling. And she’s right; we’re not weak. We can heal each other with our stories. We have the power to take back our own health with our words. I’m going to break the cycle in my family. Will you break the one in yours?

Roundups Sexual Health

This Week in Sex: The Sexually Transmitted Infections Edition

Martha Kempner

A new Zika case suggests the virus can be transmitted from an infected woman to a male partner. And, in other news, HPV-related cancers are on the rise, and an experimental chlamydia vaccine shows signs of promise.

This Week in Sex is a weekly summary of news and research related to sexual behavior, sexuality education, contraception, STIs, and more.

Zika May Have Been Sexually Transmitted From a Woman to Her Male Partner

A new case suggests that males may be infected with the Zika virus through unprotected sex with female partners. Researchers have known for a while that men can infect their partners through penetrative sexual intercourse, but this is the first suspected case of sexual transmission from a woman.

The case involves a New York City woman who is in her early 20s and traveled to a country with high rates of the mosquito-borne virus (her name and the specific country where she traveled have not been released). The woman, who experienced stomach cramps and a headache while waiting for her flight back to New York, reported one act of sexual intercourse without a condom the day she returned from her trip. The following day, her symptoms became worse and included fever, fatigue, a rash, and tingling in her hands and feet. Two days later, she visited her primary-care provider and tests confirmed she had the Zika virus.

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A few days after that (seven days after intercourse), her male partner, also in his 20s, began feeling similar symptoms. He had a rash, a fever, and also conjunctivitis (pink eye). He, too, was diagnosed with Zika. After meeting with him, public health officials in the New York City confirmed that he had not traveled out of the country nor had he been recently bit by a mosquito. This leaves sexual transmission from his partner as the most likely cause of his infection, though further tests are being done.

The Centers for Disease Control and Prevention (CDC)’s recommendations for preventing Zika have been based on the assumption that virus was spread from a male to a receptive partner. Therefore the recommendations had been that pregnant women whose male partners had traveled or lived in a place where Zika virus is spreading use condoms or abstain from sex during the pregnancy. For those couples for whom pregnancy is not an issue, the CDC recommended that men who had traveled to countries with Zika outbreaks and had symptoms of the virus, use condoms or abstain from sex for six months after their trip. It also suggested that men who traveled but don’t have symptoms use condoms for at least eight weeks.

Based on this case—the first to suggest female-to-male transmission—the CDC may extend these recommendations to couples in which a female traveled to a country with an outbreak.

More Signs of Gonorrhea’s Growing Antibiotic Resistance

Last week, the CDC released new data on gonorrhea and warned once again that the bacteria that causes this common sexually transmitted infection (STI) is becoming resistant to the antibiotics used to treat it.

There are about 350,000 cases of gonorrhea reported each year, but it is estimated that 800,000 cases really occur with many going undiagnosed and untreated. Once easily treatable with antibiotics, the bacteria Neisseria gonorrhoeae has steadily gained resistance to whole classes of antibiotics over the decades. By the 1980s, penicillin no longer worked to treat it, and in 2007 the CDC stopped recommending the use of fluoroquinolones. Now, cephalosporins are the only class of drugs that work. The recommended treatment involves a combination of ceftriaxone (an injectable cephalosporin) and azithromycin (an oral antibiotic).

Unfortunately, the data released last week—which comes from analysis of more than 5,000 samples of gonorrhea (called isolates) collected from STI clinics across the country—shows that the bacteria is developing resistance to these drugs as well. In fact, the percentage of gonorrhea isolates with decreased susceptibility to azithromycin increased more than 300 percent between 2013 and 2014 (from 0.6 percent to 2.5 percent).

Though no cases of treatment failure has been reported in the United States, this is a troubling sign of what may be coming. Dr. Gail Bolan, director of CDC’s Division of STD Prevention, said in a press release: “It is unclear how long the combination therapy of azithromycin and ceftriaxone will be effective if the increases in resistance persists. We need to push forward on multiple fronts to ensure we can continue offering successful treatment to those who need it.”

HPV-Related Cancers Up Despite Vaccine 

The CDC also released new data this month showing an increase in HPV-associated cancers between 2008 and 2012 compared with the previous five-year period. HPV or human papillomavirus is an extremely common sexually transmitted infection. In fact, HPV is so common that the CDC believes most sexually active adults will get it at some point in their lives. Many cases of HPV clear spontaneously with no medical intervention, but certain types of the virus cause cancer of the cervix, vulva, penis, anus, mouth, and neck.

The CDC’s new data suggests that an average of 38,793 HPV-associated cancers were diagnosed each year between 2008 and 2012. This is a 17 percent increase from about 33,000 each year between 2004 and 2008. This is a particularly unfortunate trend given that the newest available vaccine—Gardasil 9—can prevent the types of HPV most often linked to cancer. In fact, researchers estimated that the majority of cancers found in the recent data (about 28,000 each year) were caused by types of the virus that could be prevented by the vaccine.

Unfortunately, as Rewire has reported, the vaccine is often mired in controversy and far fewer young people have received it than get most other recommended vaccines. In 2014, only 40 percent of girls and 22 percent of boys ages 13 to 17 had received all three recommended doses of the vaccine. In comparison, nearly 80 percent of young people in this age group had received the vaccine that protects against meningitis.

In response to the newest data, Dr. Electra Paskett, co-director of the Cancer Control Research Program at the Ohio State University Comprehensive Cancer Center, told HealthDay:

In order to increase HPV vaccination rates, we must change the perception of the HPV vaccine from something that prevents a sexually transmitted disease to a vaccine that prevents cancer. Every parent should ask the question: If there was a vaccine I could give my child that would prevent them from developing six different cancers, would I give it to them? The answer would be a resounding yes—and we would have a dramatic decrease in HPV-related cancers across the globe.

Making Inroads Toward a Chlamydia Vaccine

An article published in the journal Vaccine shows that researchers have made progress with a new vaccine to prevent chlamydia. According to lead researcher David Bulir of the M. G. DeGroote Institute for Infectious Disease Research at Canada’s McMaster University, efforts to create a vaccine have been underway for decades, but this is the first formulation to show success.

In 2014, there were 1.4 million reported cases of chlamydia in the United States. While this bacterial infection can be easily treated with antibiotics, it often goes undiagnosed because many people show no symptoms. Untreated chlamydia can lead to pelvic inflammatory disease, which can leave scar tissue in the fallopian tubes or uterus and ultimately result in infertility.

The experimental vaccine was created by Canadian researchers who used pieces of the bacteria that causes chlamydia to form an antigen they called BD584. The hope was that the antigen could prompt the body’s immune system to fight the chlamydia bacteria if exposed to it.

Researchers gave BD584 to mice using a nasal spray, and then exposed them to chlamydia. The results were very promising. The mice who received the spray cleared the infection faster than the mice who did not. Moreover, the mice given the nasal spray were less likely to show symptoms of infection, such as bacterial shedding from the vagina or fluid blockages of the fallopian tubes.

There are many steps to go before this vaccine could become available. The researchers need to test it on other strains of the bacteria and in other animals before testing it in humans. And, of course, experience with the HPV vaccine shows that there’s work to be done to make sure people get vaccines that prevent STIs even after they’re invented. Nonetheless, a vaccine to prevent chlamydia would be a great victory in our ongoing fight against STIs and their health consequences, and we here at This Week in Sex are happy to end on a bit of a positive note.

Roundups Politics

Campaign Week in Review: Republican National Convention Edition

Ally Boguhn

The Trump family's RNC claims about crime and the presidential candidate's record on gender equality have kept fact-checkers busy.

Republicans came together in Cleveland this week to nominate Donald Trump at the Republican National Convention (RNC), generating days of cringe-inducing falsehoods and misleading statements on crime, the nominee’s positions on gender equality, and LGBTQ people.

Trump’s Acceptance Speech Blasted for Making False Claims on Crime

Trump accepted the Republican nomination in a Thursday night speech at the RNC that drew harsh criticism for many of its misleading and outright false talking points.

Numerous fact-checkers took Trump to task, calling out many of his claims for being “wrong,” and “inflated or misleading.”

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 Among the most hotly contested of Trump’s claims was the assertion that crime has exploded across the country.

“Decades of progress made in bringing down crime are now being reversed by this administration’s rollback of criminal enforcement,” Trump claimed, according to his prepared remarks, which were leaked ahead of his address. “Homicides last year increased by 17 percent in America’s 50 largest cities. That’s the largest increase in 25 years. In our nation’s capital, killings have risen by 50 percent. They are up nearly 60 percent in nearby Baltimore.”

Crime rates overall have been steadily declining for years.

“In 2015, there was an uptick in homicides in 36 of the 50 largest cities compared to the previous years. The rate did, indeed, increase nearly 17 percent, and it was the worst annual change since 1990. The homicide rate was up 54.3 percent in Washington, and 58.5 percent in Baltimore,” explained Washington Post fact checkers Glenn Kessler and Michelle Ye Hee Lee. “But in the first months of 2016, homicide trends were about evenly split in the major cities. Out of 63 agencies reporting to the Major Cities Chiefs Association, 32 cities saw a decrease in homicides in first quarter 2016 and 31 saw an increase.”

Ames Grawert, a counsel in the Brennan Center’s Justice Program, said in a statement posted to the organization’s website that 2016 statistics aren’t sufficient in declaring crime rate trends. 

“Overall, crime rates remain at historic lows. Fear-inducing soundbites are counterproductive, and distract from nuanced, data-driven, and solution-oriented conversations on how to build a smarter criminal justice system in America,” Grawert said. “It’s true that some cities saw an increase in murder rates last year, and that can’t be ignored, but it’s too early to say if that’s part of a national trend.” 

When Paul Manafort, Trump’s campaign chairman, was confronted with the common Republican falsehoods on crime during a Thursday interview with CNN’s Jake Tapper, he claimed that the FBI’s statistics were not to be trusted given that the organization recently advised against charges in connection with Hillary Clinton’s use of a private email server during her tenure as secretary of state.

“According to FBI statistics, crime rates have been going down for decades,” Tapper told Manafort. “How can Republicans make the argument that it’s somehow more dangerous today when the facts don’t back that up?”

“People don’t feel safe in their neighborhoods,” said Manafort, going on to claim that “the FBI is certainly suspect these days after what they did with Hillary Clinton.”

There was at least one notable figure who wholeheartedly embraced Trump’s fearmongering: former KKK Grand Wizard David Duke. “Great Trump Speech,” tweeted Duke on Thursday evening. “Couldn’t have said it better!”

Ben Carson Claims Transgender People Are Proof of “How Absurd We Have Become”

Former Republican presidential candidate Ben Carson criticized the existence of transgender people while speaking at the Florida delegation breakfast on Tuesday in Cleveland.  

“You know, we look at this whole transgender thing, I’ve got to tell you: For thousands of years, mankind has known what a man is and what a woman is. And now, all of a sudden we don’t know anymore,” said Carson, a retired neurosurgeon. “Now, is that the height of absurdity? Because today you feel like a woman, even though everything about you genetically says that you’re a man or vice versa?”

“Wouldn’t that be the same as if you woke up tomorrow morning after seeing a movie about Afghanistan or reading some books and said, ‘You know what? I’m Afghanistan. Look, I know I don’t look that way. My ancestors came from Sweden, or something, I don’t know. But I really am. And if you say I’m not, you’re a racist,’” Carson said. “This is how absurd we have become.”

When confronted with his comments during an interview with Yahoo News’ Katie Couric, Carson doubled down on his claims.“There are biological markers that tell us whether we are a male or a female,” said Carson. “And just because you wake up one day and you say, ‘I think I’m the other one,’ that doesn’t change it. Just, a leopard can’t change its spots.”

“It’s not as if they woke up one day and decided, ‘I’m going to be a male or I’m going to be a female,’” Couric countered, pointing out that transgender people do not suddenly choose to change their gender identities on a whim.

Carson made several similar comments last year while on the campaign trail.

In December, Carson criticized the suggested that allowing transgender people into the military amounted to using the armed services “as a laboratory for social experimentation.”

Carson once suggested that allowing transgender people to use the restroom that aligned with their gender identity amounted to granting them “extra rights.”

Ivanka Trump Claims Her Father Supports Equal Pay, Access to Child Care

Ivanka Trump, the nominee’s daughter, made a pitch during her speech Thursday night at the RNC for why women voters should support her father.

“There have always been men of all background and ethnicities on my father’s job sites. And long before it was commonplace, you also saw women,” Ivanka Trump said. “At my father’s company, there are more female than male executives. Women are paid equally for the work that we do and when a woman becomes a mother, she is supported, not shut out.” 

“As president, my father will change the labor laws that were put into place at a time when women were not a significant portion of the workforce. And he will focus on making quality child care affordable and accessible for all,” she continued before pivoting to address the gender wage gap. 

“Policies that allow women with children to thrive should not be novelties; they should be the norm. Politicians talk about wage equality, but my father has made it a practice at his company throughout his entire career.”

However, Trump’s stated positions on the gender wage gap, pregnancy and mothers in the workplace, and child care don’t quite add up to the picture the Trumps tried to paint at the RNC.

In 2004, Trump called pregnancy an “inconvenience” for employers. When a lawyer asked for a break during a deposition in 2011 to pump breast milk, Trump reportedly called her “disgusting.”

According to a June analysis conducted by the Boston Globe, the Trump campaign found that men who worked on Trump’s campaign “made nearly $6,100, or about 35 percent more [than women during the April payroll]. The disparity is slightly greater than the gender pay gap nationally.”

A former organizer for Trump also filed a discrimination complaint in January, alleging that she was paid less than her male counterparts.

When Trump was questioned about equal pay during a campaign stop last October, he did not outline his support for policies to address the issue. Instead, Trump suggested that, “You’re gonna make the same if you do as good a job.” Though he had previously stated that men and women who do the same job should be paid the same during an August 2015 interview on MSNBC, he also cautioned that determining whether people were doing the same jobs was “tricky.”

Trump has been all but completely silent on child care so far on the campaign trail. In contrast, Clinton released an agenda in May to address the soaring costs of child care in the United States.

Ivanka’s claims were not the only attempt that night by Trump’s inner circle to explain why women voters should turn to the Republican ticket. During an interview with MSNBC’s Chris Matthews, Manafort said that women would vote for the Republican nominee because they “can’t afford their lives anymore.”

“Many women in this country feel they can’t afford their lives, their husbands can’t afford to be paying for the family bills,” claimed Manafort. “Hillary Clinton is guilty of being part of the establishment that created that problem. They’re going to hear the message. And as they hear the message, that’s how we are going to appeal to them.”

What Else We’re Reading

Vox’s Dara Lind explained how “Trump’s RNC speech turned his white supporters’ fear into a weapon.”

Now that Mike Pence is the Republican nominee for vice president, Indiana Republicans have faced “an intense, chaotic, awkward week of brazen lobbying at the breakfast buffet, in the hallways and on the elevators” at the convention as they grapple with who will run to replace the state’s governor, according to the New York Times.

“This is a party and a power structure that feels threatened with extinction, willing to do anything for survival,” wrote Rebecca Traister on Trump and the RNC for New York Magazine. “They may not love Trump, but he is leading them precisely because he embodies their grotesque dreams of the restoration of white, patriarchal power.”

Though Trump spent much of the primary season denouncing big money in politics, while at the RNC, he courted billionaires in hopes of having them donate to supporting super PACs.

Michael Kranish reported for the Washington Post that of the 2,472 delegates at the RNC, it is estimated that only 18 were Black.

Cosmopolitan highlighted nine of the most sexist things that could be found at the convention.

Rep. Steve King (R-IA) asked, “Where are these contributions that have been made” by people of color to civilization?