Two dynamos of women’s rights law crashed through the glass ceiling—part 2
Marcia Greenberger, the founder and co-president of the National Women’s….
Marcia Greenberger, the founder and co-president of the National Women’s….
Reid Maki is the director of child labor advocacy at the National Consumers League and he coordinates the Child Labor Coalition.
Something really curious is happening in New York State. In June, the New York Assembly passed a bill to ban the nasty pesticide chlorpyrifos, which damages the development of children. But that’s not the weird part.
What’s surprising is that Governor Andrew Cuomo has not signed the bill, despite the fact that the NY Attorney General Letitia James joined five other attorneys general in suing the Trump Administration’s federal Environmental Protection Agency because it overturned an Obama Administration ban on the pesticide.
“Chlorpyrifos is extremely dangerous, especially to the health of our children,” said Attorney General Letitia James. “Yet, the Trump Administration continues to ignore both the science and law, by allowing this toxic pesticide to contaminate food at unsafe levels. If the Trump EPA won’t do its job and protect the health and safety of New Yorkers, my office will take them to court and force them to fulfill their responsibilities.”
The other states that joined the suit are Washington, Maryland, Vermont, Massachusetts, and California—the latter is the country’s largest agricultural producer (measured by cash receipts) and has decided to remove chlorpyrifos from the market in 2020.
Studies have also linked chlorpyrifos to autism, cancer, Parkinson’s disease, reduced IQ, loss of working memory, attention deficit disorders, and delayed motor development.
Nationally, home use was banned in 2001 because of its impact on children’s developing brains. In 2018, Hawaii became the first state to enact a complete ban on its use, which includes farms.
Chlorpyrifos is also thought to damage male reproductive organs to the point that it can make men sterile.
Since food safety authorities determined that there was no safe exposure level to chlorpyrifos—that any trace of the pesticide was too dangerous—the European Union is expected to ban entry of food products contaminated with the pesticide next year.
In August, the National Consumers League (NCL) and the Child Labor Coalition (CLC), which NCL co-chairs, joined 80+ groups—including many from New York—on a letter, urging Governor Cuomo to sign the chlorpyrifos ban. We were naïve enough to think he would.
With an avalanche of data suggesting it is too dangerous to use and his own attorney general suing over its use, why has Cuomo seemingly decided not to ban the pesticide? We can only guess. In July, the governor signed landmark legislation to protect farmworkers from labor abuses, ensure equitable housing and working conditions, and grant them collective bargaining, overtime pay, unemployment compensation and other benefits.
Farmworkers are some of the most exploited workers in America, and we applaud the governor for doing the right thing, but he seems to be taking the position that—having done something farm owners didn’t like—he shouldn’t sign the chlorpyrifos ban because they won’t like that either. The farmers see the pesticide as an effective tool to help them grow crops.
The problem is that chlorpyrifos doesn’t just harm those who eat farm produce; It harms the very people that produce crops—the farmers and the farmworkers and the children of both.
Should giving farmworker labor rights mean that it’s okay to endanger their fertility and cause their children to suffer developmental delays or autism? And from the farmers’ perspective, shouldn’t their children be protected from those afflictions? The governor shouldn’t be striving to protect some of the people some of the time, but should protect all of the people all of the time.
Reid Maki is the director of child labor advocacy at the National Consumers League and he coordinates the Child Labor Coalition.
I didn’t quite believe my eyes when I saw the recent New York Times headline: “For Indonesia’s Child Jockeys, Time to Retire at 10, After 5 years of Racing.” The story, written and photographed by Adam Dean, revealed that child jockeys in Indonesia’s island of Sumbawa as young as 5 are racing horses and getting hurt in the process. The cultural practice is entrenched and boy jockeys are getting younger each year. “In the late ‘90s, jockeys were usually aged from about 10 to 14 years old, but then we found the lighter jockeys to be faster, and now they are aged from about 6 to 10, Fahrir H.M. Noer, a deputy chairman of one of the races, told reporter Dean.
As an advocate who has followed child labor closely for 20 years, I was not surprised that young children might do something dangerous. More than one million children around the world are engaged in mining, which is extremely hazardous. We’ve seen photos of children in the Philippines who mine underwater, connected to very precarious breathing tubes. Children work with toxic chemicals in leather tanning facilities; they help break apart giant ships. Nearly half the 152 million children trapped in child labor perform hazardous child labor.
In this case, however, I was surprised that that children, 5 to 10, could be asked to control animals so large and fast—a task that requires well developed athletic skills. Dean’s stunning photos confirm that this phenomenon is happening:
Racing around the first bend. Adam Dean for The New York Times
Child jockeys, between ages 5 to 10, in a professional race on the island of Sumbawa in Indonesia in July.
The Child Labor Coalition has been posting these photos on Twitter (@ChildLaborCLC) and there has been almost no response from our 17,000 followers. Several tweets have elicited only one or two retweets each. There has been no horror decrying the practice–no expressions of concern for the little boys. I don’t know why this is the case. Cleary, jockeying a horse is dangerous and these children are too young. Is the public confused because horse racing is a sport? Or does it feel that the use of children as jockeys is an embedded cultural practice in Indonesia and somehow acceptable?
Dean tells the story of Firmansyah, 8, who fell off his horse while racing and hit his head on a wooden railing. Fortunately, the boy’s injury did not seem to be as serious as feared.
Although horse racing officials in Indonesia defend the practice of using child jockeys as part of the culture and something the children want to do, some Indonesian advocates disagree. The Times story quotes Arist Merdeka Sirait, chairman of the National Commission for child protection, a nonprofit: “This is clearly child exploitation. The horses move so fast. The boys ride the horses with no proper protection. This is violence against children. As children, they cannot say no to their parents or whoever ordered them to ride the horse.”
This new report of child jockeys is not the first. We’ve known for a long time that the Persian Gulf nations used child jockeys—boys trafficked form Pakistan, Bangladesh and Sudan—to ride camels in races. For a time, there were reports that the boys were being replaced with robotic jockeys but that attempt appears to have been short-lived. In July 2002, Sheikh Hamdan bin Zayed Al Nahyan announced a ban on child jockeys under 15, but in 2010, Anti-Slavery International photographed violations of the ban. A report in FrontPage Mag in December of 2011 said that the “Camel jockey slave trade [is] still alive and well.” The report noted that some of the Persian Gulf’s boy jockeys in training were “starved, beaten and sometimes sexually abused.” Death and serious injury, as well as damaged genitals, may result from jockeying. The child jockeys in the Persian Gulf were also often victims of trafficking from other countries—something that doesn’t seem to be happening to the child jockeys of Indonesia.
The Indonesian jockeys wear masks on their faces. We can’t help but wonder if it is a deliberate attempt to obscure the riders’ faces so that race fans can ignore the fact that children are risking their lives for their pleasure.
An owner embracing his horse after a winning ride. Adam Dean for The New York Times
Check out this boy who is resting after an injury—he looks so young and fragile:
Imam Dudu, 8, resting after a fall. Adam Dean for The New York Times
And the facial injuries to this rider:
Firmansyah, 8, who fell from his horse the day before, getting ready for another race.
Isn’t it time for this dangerous practice to end?
Our gratitude to Adam Dean for breaking this story and for his stunning photos. Thanks to the New York Times for this powerful expose.
The work of the National Consumers League is making a difference in people’s lives across the country. Meet some of the consumers touched by our programs.
Read about NCL’s impact
Paige, 55, a Nashville wife and mother of two, answered an employment ad for secret shoppers. Before sending payment to the scammers, she reached out to NCL.
Read about NCL’s impact
A grease fire flared up in Decklan’s kitchen. As his family scrambled and panicked, fearing that the whole house might erupt in flames, Decklan remained calm. He hurried over to the pantry, grabbed some baking soda, and dumped it on the fire quickly extinguishing the blaze.
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Cincinnati resident Charles, 45, lost his computer business — and health insurance— during a time of economic downturn. A diabetic, Charles was now unable to afford his medication. He stopped taking it which made him seriously ill and put his life at risk.
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Jeremy is a fast-food worker who has been employed at a number of Chipotle restaurants in New York City. When he was just 20 years old, he took part in an NCL research project that revealed that management practices within the fast food chain were putting workers—and food safety for customers—at risk.
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PBPA Commends HHS Funding to Support Maternal and Infant Health
The Preterm Birth Prevention Alliance (PBPA), a coalition of maternal and women’s health advocates dedicated to improving preterm birth outcomes in the United States and addressing its disproportionate impact on women of color, applauds the U.S. Department of Health and Human Services (HHS) for awarding nearly $350 million to states across the country to improve support for safe pregnancies and healthy babies.
“For far too long, U.S. maternal health care has lagged behind that of other developed countries, particularly for women of color,” noted Sally Greenberg, Executive Director of the National Consumers League. “This additional funding will enable local health departments and nonprofits to better address the health care needs of the most vulnerable mothers and their babies.”
The funding, awarded by HHS’ Health Resources and Services Administration (HRSA), will support home visiting services, increase access to doulas, address infant mortality and maternal illness, and improve data reporting on maternal mortality.
“Maternal health care in the U.S. has consistently failed women of color,” Greenberg continued. “We applaud HHS for this additional funding that will help to improve the maternal health for all mothers and babies, especially women of color and those most at-risk.”
The funding announcement follows the release of a report by the U.S. Commission on Civil Rights which found that Native American women are more than two times more likely to die from pregnancy-related complications than white women in the U.S. This disparity was further exacerbated for Black women in the U.S., who are three to four times more likely to die from pregnancy-related complications than white women.
“In addition to expanding programs to support maternal health, we must increase representation from racially and ethnically diverse groups in research and clinical trials, particularly those studying treatment options to prevent maternal morbidity and mortality,” said Greenberg. “The need for the additional HHS funding and the report from the Commission on Civil Rights clearly illustrate how critical representative research and real world evidence are to ensuring all mothers and their babies have the same opportunity for the best possible health outcomes.”
/in Blog, Health, Prevention Blog Post
By Sally Greenberg, NCL Executive Director
While the COVID-19 pandemic has led to hardship for all Americans, it is clear that people of color have been disproportionately burdened. Across the health care continuum, addressing this disparity has become part of the broader conversation about the history of systemic racism and the underlying social determinants of health that negatively affect the mental, physical, and economic health of individuals and entire communities.
The pandemic has underscored persistent health disparities, and there is growing recognition that representation in research and clinical trials can have a profound impact on health outcomes. A lack of representation from racially and ethnically diverse groups in research and clinical trials have typically led to gaps in data, missing the opportunity to assess the full impact of various treatments and drugs across a range of populations. The collection and use of real-world research and data to inform the potential use, risks, and benefits of medical products and treatments can ultimately lead to better health outcomes, particularly for those who have been underrepresented in the past.
Existing efforts to improve inclusion
Efforts to expand diversity and representation in medical research are underway in Congress. Policymakers are encouraging the incorporation of Real World Evidence (RWE) in drug development through the recent Cures 2.0 draft legislation released by Reps. Diana Degette (D-CO-1) and Fred Upton (D-MI-6). While the status quo limits us from effectively reaching underserved populations, the proposed legislation would allow studies that include RWE for some drugs after they have been approved. At the heart of this issue is a growing appreciation that the same therapy can affect different populations in different ways, which is why Cures 2.0 supports collecting data that more accurately reflects the unique experiences and needs of patients across diverse populations.
Recognizing the potential for RWE in maternal health
The lack of representative research in the field of maternal health is undeniable, and its implications are staggering. The dismal state of maternal care in the United States reflects how our health care system has failed women of color, including by not adequately studying treatment options to prevent maternal morbidity and mortality. The need for RWE is clear when you consider the persistent disparities in health outcomes that plague minority communities.
Preterm birth and its disproportionate impact on women of color is a stark illustration of the need to make progress on representative research in maternal health. Preterm birth is the second-largest contributor to infant death in America today. Despite the tremendous physical, emotional, and financial toll that preterm birth continues to take on our country — disproportionately so on women and families of color — not enough therapeutic tools currently exist to prevent it.
Today, “17P,” the only FDA-approved treatment to help reduce the likelihood of spontaneous, recurrent preterm birth in the United States is at-risk of being withdrawn from the market in all its forms, including the branded product and five generic versions. Unfortunately there is conflicting evidence from two different clinical trials, one representative of a diverse U.S. population and another studied in a largely white population in Europe. It’s not a straightforward comparison. If 17P is withdrawn, the women most affected by preterm birth, predominantly women of color, would be left without an FDA-approved treatment option.
The FDA is considering the path forward, including additional data collection through leveraging RWE from past patient use. The success of the first (approval) trial for 17P in the impacted communities signals the importance of RWE. Continued access to 17P is, at its core, a matter of health equity. Black women must not yet again be left vulnerable to a system that historically has overlooked them.
PRETERM BIRTH PREVENTION ALLIANCE APPLAUDS FDA’S GRANTING OF HEARING FOR THE ONLY FDA-APPROVED THERAPIES TO REDUCE RECURRENT PRETERM BIRTH
WASHINGTON, DC, August 26, 2021 –
Preterm Birth Prevention Alliance a coalition of maternal and women’s health advocates dedicated to improving preterm birth outcomes in the United States and addressing its disproportionate impact on women of color, commends the U.S. Food and Drug Administration (FDA) for granting a public hearing to discuss 17P, the only FDA-approved class of branded and generic treatments to reduce preterm birth in indicated patients.
We appreciate the FDA’s willingness to hear directly from individuals facing prematurity and the providers who treat them about their experiences with 17P,” said National Consumer League’s Executive Director Sally Greenberg. “It is an important step towards better understanding variations in efficacy across diverse populations and ensuring all women have an equal chance at the best possible outcomes.”
Last week, the FDA agreed to grant Covis Pharma, the manufacturer of the branded 17P product Makena its request for a public hearing to discuss 17P. Hydroxyprogesterone caproate—or “17P”—has been approved since 2011 and is the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth in the United States. In 2020, the FDA proposed withdrawing 17P in all its forms, including the branded product and its five generic versions, based on conflicting efficacy data from two studies composed of vastly different populations, one predominantly inclusive of women in the U.S. most vulnerable to preterm birth and one not.
“Mothers and birthing people deserve access to the best possible treatments to prevent preterm birth. We cannot achieve birth equity if we study pregnant women as a monolith,” said Blythe Thomas, Initiative Director of 1,000 Days. “It is only by systematically researching the real-world, post-market impact of 17P on individuals from a variety of racial and ethnic backgrounds, while maintaining access for all affected, that we can reduce disparities in maternal and infant health.”
While the hearing date has not yet been set, the Alliance looks forward to sharing the perspectives of affected individuals and their physicians with the agency once the hearing is scheduled and will continue to advocate for at-risk moms and babies of all races and ethnicities.
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ABOUT THE PRETERM BIRTH PREVENTION ALLIANCE
The Preterm Birth Prevention Alliance (PBPA) is a coalition of maternal and women’s health advocates who share a common concern about the state of preterm birth in the United States and the proposed market withdrawal of 17P, the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth. Formed in 2021 by the National Consumers League, the 15 partners in the PBPA seek to improve preterm birth outcomes in the United States by maintaining access to safe, FDA-approved treatment options and advocating for more diverse medical research that adequately represents the experiences of women and newborns of color. Women of color need a seat at the table. To learn more, visit www.pretermbirthalliance.org
LEADING PATIENT ADVOCATES LAUNCH PRETERM BIRTH PREVENTION ALLIANCE TO PROTECT CRITICAL ACCESS TO THE SOLE FDA-APPROVED CLASS OF THERAPIES TO REDUCE RECURRENT PRETERM BIRTH
WASHINGTON, DC, April 20, 2021 – Today, the National Consumers League (NCL), along with a coalition of patient advocacy organizations dedicated to advancing the health of mothers and infants, announced the launch of the >Preterm Birth Prevention Alliance.
Members of the Alliance are joining forces in an effort to preserve patient access to the only Food & Drug Administration-approved class of treatments for pregnant women who have previously had an unexpected, or spontaneous, preterm birth. Together, Alliance members seek to ensure that the Food & Drug Administration (FDA) hears concerns from the full range of stakeholders about the potential risks and impact of withdrawal for at-risk pregnant women and their providers.
For the fifth year in a row, the U.S. preterm birth rate has increased (to 10.2 percent of births), and preterm birth and its complications were the second largest contributor to infant death across the country. Preterm birth also represents a significant racial health disparity, with Black women in America experiencing premature delivery at a rate 50 percent higher than other racial groups throughout the country.
However, in 2020, the FDA >proposed withdrawing hydroxyprogesterone caproate, commonly called “17P” or “17-OHPC”, the only FDA-approved class of branded and generic treatments to help prevent the risk of preterm birth in women with a history of spontaneous preterm birth. The FDA is currently determining whether to hold a hearing on the status of 17P, based on conflicting efficacy data from two studies composed of vastly different patient populations, one inclusive of women in the U.S. most vulnerable to preterm birth and one not.
“We’re fighting for a more inclusive healthcare system that gives everyone an equal chance to have the best outcomes possible,” said Sally Greenberg, executive director of the National Consumers League. “We don’t believe that removing 17P from the market without gaining a better understanding of who could benefit the most from its use is in the best interests of patients, nor their healthcare providers, particularly as there are no other approved treatment options available.”
To date, 14 organizations have joined NCL to advocate for the health interests of at-risk pregnant women and infants, including: 1,000 Days; 2020 Mom; American Association of Birth Centers; Black Mamas Matter Alliance; Black Women’s Health Imperative; Expecting Health; Healthy Mothers, Healthy Babies Montana; HealthyWomen; Miracle Babies; National Birth Equity Collaborative; National Black Midwives Alliance; National Partnership for Women & Families; Sidelines High-Risk National Support Network; and SisterReach.
“As a trained obstetrician and gynecologist, I know firsthand the impact of preterm birth on Black women and birthing people. I also know that racism – not race – is the driving factor leading the disproportionate impact of preterm birth on Black women and birthing people thereby exacerbating systemic inequities in maternal and infant health. To achieve birth equity, which is the assurance of the conditions of optimal births for all people with a willingness to address racial and social inequities in a sustained effort, we must work to protect and uphold a standard of care for spontaneous, recurrent preterm births and ensure it remains accessible and affordable for all who stand in need,” added Dr. Joia Crear Perry, founder and president of the National Birth Equity Collaborative.
The Preterm Birth Prevention Alliance is calling for the FDA to grant a public hearing to fully consider all of the data, additional research methods, and stakeholder perspectives before deciding whether to withdraw approval of this critical class of therapies. The health of America’s moms and babies warrants the utmost care and consideration.
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ABOUT THE PRETERM BIRTH PREVENTION ALLIANCE
The Preterm Birth Prevention Alliance is a coalition of maternal and women’s health advocates who share a common concern about the state of preterm birth in the United States and the proposed market withdrawal of 17P, the only FDA-approved class of treatments to help prevent spontaneous, recurrent preterm birth. Formed in 2021 by the National Consumers League, we seek to improve preterm birth outcomes in the United States by maintaining access to safe, FDA-approved treatment options and advocating for more diverse medical research that adequately represents the experiences of women and newborns of color. Women of color need a seat at the table. To learn more, visit www.pretermbirthalliance.org.
Initial support for the Preterm Birth Prevention Alliance is provided by Covis Pharma.
MEDIA CONTACT:
Carol McKay, carolm@nclnet.org
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