NeDina Brocks-Capla sits in her kitchen in San Francisco. Her son Kareem Jones died at age 36 from sickle cell disease. (Jenny Gold/KHN)
For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor.
“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.
It’s not just the loss of her son that upsets Brocks-Capla; she believes that if Jones had gotten the proper medical care, he might still be alive today.
Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multi-organ failure and stroke.
About 100,000 people in the United States have sickle cell disease, and most of them are African-American.
Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.
Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, a professor at Princeton University who writes about the history of the disease.
It is also an example of the broader discrimination experienced by African-Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation and Harvard T.H. Chan School of Public Health.
Dr. Elliott Vichinsky examines Derek Perkins at the sickle cell center at UCSF Benioff Children’s Hospital Oakland, which sees both children and adults. (Jenny Gold/KHN)
“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Dr. Elliott Vichinsky, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”
Indeed, with the proper care, Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.
Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Vichinsky’s patient since childhood.
“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Perkins said.
When Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.
“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours — all I needed was an emergency blood transfusion and I was awake,” Perkins recalls.
Kareem Jones lived just across the bay from Perkins, but he had a profoundly different experience.
Jones’ mother, Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care — that’s not consistent care for a disease of this type,” said Brocks-Capla.
Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Jones had frequent pain crises. Usually he ended up in the emergency room where, Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.
When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’”
Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other pain patients. The opioid crisis has made things even worse, Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.
NeDina Brocks-Capla stands in her living room in San Francisco. She made a shrine filled with memories of son Kareem Jones, who died of sickle cell anemia in 2013. (Jenny Gold/KHN)
Despite his illness, Jones fought to have a normal life. He lived with his girlfriend, had a daughter and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.
For years, he took a drug called hydroxyurea, but it had side effects, and after a while Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” said Brocks-Capla.
Indeed, hydroxyurea, which the FDA first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Jones’ lifetime. In July, the FDA approved a second drug, Endari, specifically to treat patients with sickle cell disease.
Funding by the federal government and private foundations for the disease pales in comparison to other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care and most often occurs in Caucasians. Cystic fibrosis gets seven to 11 times more funding per patient than sickle cell disease, according to a 2013 study in the journal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.
“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Vichinsky said of sickle cell patients. “The death rate is increasing. The quality of care is going down.”
Without a new medication, Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital, with the worst pain of his life. The doctors stabilized him and gave him pain meds but did not diagnose the underlying cause of the crisis. He was released to his mother’s care, still in incredible pain.
At home, Brocks-Capla ran him a warm bath to try to soothe his pain and went downstairs to get him a change of clothes. As she came back up the stairs, she heard loud banging against the bathroom walls.
“So I run into the bathroom and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’”
She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she said.
It turned out Jones had a series of small strokes. His organs were in failure, something Brocks-Capla said the hospital missed. She believes his death could have been prevented with consistent care — the kind he got as a child. Vichinsky thinks she is probably right.
“I would say 40 percent or more of the deaths I’ve had recently have been preventable — I mean totally preventable,” he said, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this — this isn’t a knowledge issue. It’s an access issue.”
A nurse takes patient Derek Perkins’ blood pressure at the sickle cell center at UCSF Benioff Children’s Hospital Oakland — one of only three places in California that offer specialized services for adults with sickle cell disease. (Jenny Gold/KHN)
Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent premature death. Patients at these clinics live two decades longer than the average sickle cell patient.
Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well, because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle even to access treatments that have been around for decades, Vichinsky said.
The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Vichinsky said.
In the 1960s and ’70s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at their “survival conferences” across the country.
“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night — and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.
The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle cell disease.”
For a while, funding did increase, newborn screening took hold and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed, and life expectancy started dropping again.
Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.
“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” said Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”
A health care worker takes the body temperature of a man in Mangina, Democratic Republic of Congo, on Aug 8, 2018. Health experts began Ebola vaccinations in Congo’s northeast village of Mangina for the latest deadly outbreak. (AP Photo/Al-hadji Kudra Maliro)
Thousands of faithful in eastern Democratic Republic of Congo are staying home from church services to avoid contracting or spreading Ebola.
“We are staying in our homes. We can’t go to church and worship together as Christians,” said Daniel Sango, who spoke to Religion News Service by phone from Mangina, 24 miles southwest of the town of Beni in North Kivu. “People are afraid of contracting the virus. Many are listening to the gospel of God on radio stations.”
Thousands of churches remain closed in the country’s eastern regions as the Ebola virus continues to spread. Since August, when the latest outbreak was declared in eastern Congo, 137 confirmed or probable cases have been registered, including 92 deaths, according to the country’s health officials.
In a bid to contain the virus, religious leaders and officials have urged residents not to meet in big numbers.
Earlier this year, three Ebola patients left a treatment center in the northwestern city of Mbandaka and attended a church service, where they came into contact with other congregants. The three patients were later found dead in their homes.
“People should not meet in big number either in church or elsewhere,” said pastor Sarah Kalenga of the Church of Jesus Christ in a telephone interview from Mangina. “We are finding ways to end the spread of the virus. People should pray from their houses and God will answer those prayers. We are trusting in God, but we should not tempt him.”
Ebola, which is spread through close contact with the blood, secretions, organs or other bodily fluids of those infected, is highly contagious and can kill within days. The virus returned to Congo only days after a previous outbreak that killed 29 people was declared over in July.
The Democratic Republic of Congo in central Africa. Map courtesy of Creative Commons
Two new cases were reported in Butembo last week, according to UNICEF.
“Butembo is an important commercial city and has nearly one million inhabitants. So there is a real risk the virus could spread quickly in such a large population center,” Gianfranco Rotigliano, UNICEF representative, said in a statement last week. “The number of confirmed Ebola cases in Butembo remains limited, but we have to ensure that everything is being done now to ensure that the outbreak is controlled at this early stage.”
Religious leaders in May suspended sacraments during the Ebola outbreak to help protect worshippers from contracting the disease.
“Although Masses are continuing, sacraments such as baptism and confirmation have had to be suspended,” Monsignor Jean-Marie Bomengola, secretary of the church’s Social Communications Commission, told Catholic News Service during the summer.
The Rev. Lucien Ambunga, a Catholic pastor, was quarantined after being infected with Ebola in Mbandaka town. The priest survived after being taken to a treatment center in Bikoro, a small town in northwestern Congo. The government said the priest became infected while praying as he placed his hands on an Ebola patient in his parish.
Measures have now been taken to help prevent the spread of Ebola virus in this central Africa republic. The government and the World Health Organization said an Ebola vaccination program is underway for high-risk populations in the eastern part of the country, including North Kivu.
“Vaccines are an important tool in the fight against Ebola,” said Oly Ilunga, the country’s minister of health. “This is why it has been a priority to move them rapidly into place to begin protecting our health workers and the affected population.”
A health care worker wears virus protective gear at a treatment center in Bikoro, Democratic Republic of Congo, on May 13, 2018. (AP Photo/John Bompengo)
Officials are doing what they can to encourage locals’ cooperation with prevention measures.
“We have decided to make treatment free to remove the financial barrier that could dissuade the population from going to the health center,” said Bathe Tambwe, an official in charge of coordinating the fight against the disease in eastern Congo.
However, some locals have dismissed use of the Ebola vaccine, saying it does not work. Many said they are prevented from mingling with others or even going to church after being vaccinated.
The mystery of the Ebola virus has left some locals believing that it is a curse or the result of evil spirits and that it can only be solved by prayers and fasting.
“I don’t think this is normal disease that doctors can handle. It’s brought by evil spirits as a punishment to the community,” said Sango, 30, a father of two who owns a butchery in Mangina. “We need to come together as a community and ask God for forgiveness for the sins we committed.”
Meanwhile, Christians in the eastern part of the country continue to pray at home for the end of Ebola and also to keep up the faith.
“Some of us have turned our houses to be churches. We sing, dance and pray to move closer to God. We read our Bibles and pray so that the Holy Spirit can guide us,” said Sango.
Nearly two years out of the White House, former President Barack Obama is facing another political test.
To the delight of many Democrats, he’s stepped back into the fray that former presidents often try to avoid, campaigning for Democratic candidates ahead of the midterms and blasting the political culture of the Trump era. He attracted a large, adoring crowd this past week in Ohio and will be in Pennsylvania on Friday campaigning for Democratic Sen. Bob Casey.
But Obama’s return poses challenges for both the former president and his party. For one, Obama has struggled to turn admiration for him into votes when he’s not on the ballot. Democrats lost significant ground in the 2010 and 2014 midterms and his enthusiastic campaigning for Hillary Clinton didn’t carry her across the finish line in 2016. Perhaps more importantly, Obama’s public re-entry into politics could serve as a motivating factor for Republicans, potentially handing the GOP a gift at a time when they face an uphill battle to maintain their grip on Congress.
“This is perfect for us,” said Rep. Lou Barletta, the Republican challenging Casey for the Senate seat. “It will energize Republicans as a reminder.”
The former president will also “energize those blue-collar Democrats who worried about their jobs under Obama and went out to vote for Donald Trump,” Barletta added.
For their part, Democrats say an Obama visit is a huge boon. Massive crowds give candidates and the party a chance to organize, update contact lists, motivate new donors and boost volunteerism.
Michael Halle, the campaign manager for Richard Cordray, the Democratic candidate for governor in Ohio, said Obama’s visit sent a message about the stakes of the race, which could have implications for redistricting and voting rights in the future.
“First and foremost, it’s important for the people who live in Ohio,” he said. “But secondly, there are also significant national implications, and I think the (former) president weighed those in making the decision.”
An aide to the former president said Obama is aware that he does not have a strong record of aiding Democrats in midterm elections and that his presence can have the effect of galvanizing Republican voters. The aide said Obama would take a strategic approach to the midterm races and pointed to the light footprint that the former president kept earlier in his post-presidency. That’s when he recorded a get-out-the-vote robocall for Democrat Doug Jones, rather than travel to Alabama to appear with Jones ahead of his upset Senate victory. The aide cast the decision as an example of how Obama could still lend his voice in a part of the country where he is less popular.
The aide lacked authorization to discuss publicly Obama’s thinking and spoke on condition of anonymity.
Scott Mulhauser, who served as Vice President Joe Biden’s deputy chief of staff during the 2012 election, said Obama left office as the “most admired man in the country, and his popularity has only increased since.”
“Part of his success is being strategic in his approach to campaigning — coordinating with campaigns to maximize his impact and minimize any blowback, stumping where it makes sense and avoiding where it doesn’t,” Mulhauser said, noting Obama’s role in the Jones campaign. “He’s rightfully out on the trail for certain campaigns, taking a pass on others and recording calls and sending emails on behalf of those that want to use him and his popularity in a targeted manner.”
In Pennsylvania, Obama returns to a state he carried twice but that swung to Trump in 2016. The state features critical contests for Congress and governor. Rep. Dwight Evans of Philadelphia, where Obama will campaign, said that the former president’s presence will be important for his ability to motivate African-American voters, college-aged voters and the poor.
“I think that he can help Democrats, and I think it needs to be really targeted,” Evans said.
Both African-Americans and college-age voters were crucial to Obama’s victories in 2008 and 2012, and because Obama was the first black president, Evans said, “he can say some things to the African-American community that cannot be said by anybody else.”
While in Philadelphia, Obama will fundraise for Senate Democrats in general and in particular, Casey, who was among Obama’s earliest Senate backers when he sought the Democratic presidential nomination in 2008.
While Obama’s full schedule is taking shape, aides say he is weighing how to best engage on behalf of Democratic candidates across the nation. Earlier this year, he endorsed more than 80 Democrats across more than a dozen states, and aides say a second wave of endorsements is expected this fall.
Brenda Boots, 42, who attended the Ohio rally, said Obama is a welcome presence and hoped he would inject the governor’s race with new life.
“How could he hurt?” she asked. “I don’t think he could hurt.”
In April, a 25-year-old black woman named Chikesia Clemons was violently arrested by police at a Waffle House restaurant in Alabama.
A video of the arrest that went viral shows police pulling Clemons from her chair and throwing her to the floor. In the process, her breasts are exposed and her dress rides up in the back. When she attempts to cover her breasts, the two officers on top of her threaten to break her arm for “resisting.”
Clemons’ experience is not uncommon. In the U.S., black women are not afforded the same regard for bodily privacy as white women.
Another example: In an investigation of the Baltimore City Police Department, the Department of Justice found that the Baltimore Police Department frequently engaged in unjustified strip searches of African-Americans. In one instance, Baltimore police conducted a strip search of a black woman, including an anal cavity search, on a sidewalk in broad daylight and in full public view. The woman’s pleas to not be forced to disrobe in public were ignored. Her offense? A broken headlight.
While the #MeToo movement has been successful in bringing down several high-profile assailants, critics continue to argue that it has been monopolized by middle- and upper-class white women, particularly white Hollywood actresses. This, despite the fact that a black woman, Tarana Burke, created the Me Too campaign more than a decade ago. These criticisms reflect the fact that black women have experienced sexual violence differently than white women.
As a philosopher of race and gender who has written about sexual harassment, I offer historical context on the ways that black women experience sexual abuse, often by the authority of the state, as a way to think about black women’s contemporary experiences as the kinds of experiences that #MeToo should address.
In this Dec. 8, 2017, file photo, Anita Hill and Fatima Goss Graves join a discussion about sexual harassment in Beverly Hills, Calif. The sexual assault allegations against Supreme Court nominee Brett Kavanaugh recall Hill’s accusations against Clarence Thomas in 1991, but there are important differences as well as cautions for senators considering how to deal with the allegations. (Photo by Willy Sanjuan/Invision/AP, File)
History of black women’s bodies on display
As early as the 17th century, European men wrote travel narratives about their trips to West Africa to capture, enslave and trade African people. Their writings offer a window into how they perceived African women and what they thought primarily European male readers would find titillating.
In particular, their descriptions of West African women’s style of dance played a role in shaping European perceptions of black women’s sexual immorality and availability.
These travel accounts were the popular media of their day and offered some of the first reports of continental Africa to average Europeans. For example, Frenchman Jean Barbot wrote of African men and women “knocking bellies together very indecently” while “uttering some dirty mysterious words.” Meanwhile, naval officer Abraham Duqesne characterized African women as desiring the “caresses of white men.”
Because African women differed from European women both in attire and bodily movement, European travel writers regarded African women as sexually available and immoral. European settlers carried these attitudes to the United States where enslaved black women were subjected to violent sexual abuse and forced nudity as routine social practice, in ways that would have been unthinkable toward white women.
Sexual violence and the father of gynecology
By the 19th century, treating black and white women differently was firmly entrenched in society. Nowhere was this more evident than in the practice of J. Marion Sims, the physician widely regarded by gynecologists as the “father of modern gynecology.” The convention of the period was for physicians to conduct gynecological examinations of white women with averted gazes while the patients remained as clothed as possible.
However, Sims also conducted medical experiments on enslaved black women that ultimately resulted in a technique to repair vesicovaginal fistula, an opening that can develop between the vaginal wall and the bladder or large intestine, sometimes as a result of childbirth. The enslaved black women were stripped completely naked and examined on all fours, as Sims and other physicians took turns using a specially created speculum that enabled full viewing of the vagina. Private citizens were also allowed to watch these experiments and they, too, were invited to witness the full exposure of enslaved women’s vaginas.
Sims conducted his experiments without anesthesia, despite the fact that ether was known and in use by the time he performed later surgeries. Black women were denied anesthesia on the grounds that black people did not feel pain in the same ways that white people felt pain, a perception that still exists today. For example, one study found that when people viewed images of blacks receiving painful stimuli, like needle pricks, they responded with less empathy than when they viewed similar images of white people in pain.
Sexual violence in a court of law
In New York in 1925, another historical example shows how black women’s exposed bodies have been treated with indifference. Kip Rhinelander, a member of New York’s high society, was set to wed Alice Beatrice Jones, a working-class biracial woman. Their union drew national attention.
Although New York did not legally prohibit interracial marriage as other states did at that time, society strongly disapproved of interracial marriage.
Once their marriage was made public, Kip filed for divorce on the grounds of fraud. The salient question in the divorce hearing was whether Kip knew that Alice was black at the time of their marriage.
In order to answer that question, Alice’s attorney suggested that Alice bare her breasts in front of the all-white male jury, judge and attorneys in order to prove her racial identity. By viewing the shading of her areolas and legs, he said, the jurors could assess whether Kip – who had admitted to premarital sex with her – should have known her racial identity.
The judge directed Alice to follow through. Neither Alice Rhinelander’s tears nor her connection to a prominent white family could save her from the indignity of forced nudity in front of strangers. Ultimately, the jury decided that Alice was, in fact, “of colored blood” and that she did not conceal or misrepresent her racial identity.
The past is present
The hostility to black women’s bodily privacy and dignity in these examples isn’t accidental. Rather, it is part of the history of how black women have been cast in U.S. society.
In the Sims and Rhinelander examples, the legal status of enslavement and weight of the court validated the coercive display of black women’s bodies. The Department of Justice found that the Baltimore police used the weight of their badges to force compliance with public strip searches. Likewise, in the Waffle House example, although Clemons’ initial exposure may not have been intentional, the police responded to her cries and her attempts to cover herself by using their authority to threaten her with further harm.
This is a unique form of sexual violence experienced by black women. The convergence of race and gender in black women’s lives has created the social conditions in which black women are coerced and often expected, under threat of punishment by the government, to suffer the exposure of intimate body parts.
Race and gender converge in black women’s lives and have created the social conditions under which black women are coerced and expected to suffer the exposure of intimate body parts, or else face punishment. If movements like #MeToo are serious about combating sexual violence, then they have to also understand these practices as sexual violence.