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Before The Fuller Project’s reporting, the federal health program for 9/11 first responders and survivors covered every single cancer except for uterine cancer.
But after a decade of lobbying and waiting, 9/11 first responders and survivors with uterine cancer can finally get the federal health coverage they’ve long been promised. In mid-January, U.S. Health and Human Services (HHS) officials added uterine cancer to the list of conditions covered by the government program that monitors and treats those directly impacted by 9/11.
Hundreds of program enrollees who survived Ground Zero but received no help from the government for their uterine cancer will now get that coverage — like Donna Malkentzos, Patricia Grande and Tammy Kaminski — and thousands more who were never able to enroll now qualify for the program.
“We’re relieved and feel like we can finally exhale, knowing many women will now receive the benefits they deserve,” said Kaminski, a chiropractor based in West Caldwell, N.J. who volunteered for months at Ground Zero and later developed uterine cancer in 2015.
The decision comes after multiple stories from The Fuller Project and its partners about how women were systemically left out of the government’s World Trade Center Health Program (WTCHP).
The reason cited for uterine cancer exclusion was “insufficient evidence” that it was linked to 9/11. But stories run by The Fuller Project and its partners — Reckon, The Star-Ledger/NJ.com and The Cut — revealed the lack of data was due to the small number of women included in the early days of the program, which resulted in skewed research samples and excluded conditions that affect women.
The program uses its own data to aggregate 9/11 causation and subsequent treatment, so uterine cancer and other female-specific conditions like auto-immune disorders were left off the list because patients in the WTCHP (mostly male) never developed those conditions — a catch-22 with women as the collateral damage. There was no data to prove causation for women’s conditions because it wasn’t collected — part of a systemic problem in health research.
Following our collaborative reporting with Reckon and NJ.com in early January, Rep. Frank Pallone (D-N.J.) sent a letter to HHS Secretary Xavier Becerra and WTCHP Administrator John Howard urging them to act. Pallone sits on the House Energy and Commerce Committee with jurisdiction over HHS, and also serves a district where many 9/11 survivors and first responders live.
Just over a week after Pallone’s letter, HHS released a final rule that uterine cancer patients could immediately apply for the program, noting that a “delayed effective date would defer the agency’s ability to provide life-saving treatment and result in less favorable treatment outcomes and survival rates for covered individuals.”
This story and subsequent outcome resulted from dogged follow-up and innovative newsroom collaboration. Over the last three years, reporter Erica Hensley and The Fuller Project exposed the initial exclusion, followed the policy process to add uterine cancer, and ultimately, the delay, when after more than six months officials hadn’t followed through on their promises to add women with uterine cancer to the coverage rolls. It was our final story about the delay in January 2023, which landed in front of Pallone and his constituents, that finally prompted federal action.
Advocates for uterine cancer awareness say the news is an opportunity to spread the information about WTCHP enrollment, but also uterine cancer in general, which is often misdiagnosed or diagnosed late and leads to worse outcomes.
“They were told the air was safe to breathe. They were told their cancer wasn’t caused by 9/11. Now these women can feel vindicated and can access free healthcare that is statistically more likely to extend their lives,” says Matthew Baione, a lawyer who has been one of the earliest advocates for the cancer’s inclusion.
The U.S. essential oils company doTERRA sources most of its frankincense oil from harvesters in Somaliland, but workers say the company does not practice the ethical approach it preaches. More than a dozen women working for doTERRA’s frankincense supplier, a company called Asli Maydi, say that the company routinely underpays its workers, requires them to work in harsh conditions that are linked to health problems and is led by a politically powerful man whom multiple women have accused of sexual harassment and assault.
For this two-year investigation, co-published with the Guardian, The Fuller Project spoke to thirteen frankincense sorters (women who who divide frankincense resin by color, grade and quality), three alleged sexual harassment victims, and a former U.S-based sustainability consultant who accused the supplier, Barkhad Hassan, of rape.
“People are scared of Barkhad Hassan and his gang,” one woman said at the time. “We are living a life of hell.”
Reporting this story was difficult in a culture that made women ashamed to speak about how they’d been victimized. One woman kept describing how she “felt terrible” and was not herself after one of the incidents in question — she was too ashamed to say the word “rape” aloud to our reporter, the translator explained. She later talked more explicitly about the assault in a written statement. Our reporter earned her sources’ trust by continuing to show up — speaking with them several times for months before formally interviewing them, periodically checking in with them throughout the process, and being dedicated to the story despite publishing setbacks.
The story’s impact was swift and powerful. Presented with The Fuller Project’s findings before publication, doTERRA said it would “temporarily suspend” its operations in Somaliland and was working to engage a third-party team to help it investigate the matter. Within weeks of publishing, the sorters had formed their own cooperative and are now working for their own company. The supplier appears to have left the country.
The Fuller Project’s reporting drew attention for the first time to the exploitation of women sorters by a company that says it champions community investment and competitive wages. doTERRA markets to women, engages mostly female “wellness advocates” to sell their products, and counts among its influencers prominent female athletes and celebrities including singer/songwriter India Arie Simpson, professional tennis player Sloane Stephens, and Olympic Gold Medalist Jamie Anderson, according to their website.
U.S. customers expressed dismay and disappointment that doTERRA wasn’t implementing the ethical practices it promised. This story helped them make an informed choice about the products they were purchasing and gave them the ability to vote with their wallets.
For the thousands of women who lived and worked in lower Manhattan during the September 11 attacks — many of whom breathed dust from the towers for months afterward — the profound and sometimes fatal long-term impacts on their health remain understudied and undercovered.
The federal World Trade Center Health Program (WTCHP), which was created to provide free medical monitoring and treatment for 9/11 survivors and responders, relied on initial research conducted overwhelmingly on male first responders to determine what treatments would qualify — which means some of the most common conditions for women survivors, such as breast cancer, went uncovered for years.
For The Fuller Project and The Cut, reporter Susan Rinkunas spent months speaking with women who had survived 9/11 to later be diagnosed with cancer, asthma, auto-immune or mental health disorders, who revealed what this critical lack of research on women survivors means for their health.
When our story published, just ahead of the twentieth anniversary of the September 11 attacks, some of those women were battling uterine and endometrial cancers that were still not covered by the WTCHP; a hearing to discuss whether uterine cancer should qualify for coverage was scheduled for later that month. By November, an advisory committee unanimously approved a recommendation to include uterine cancer under the WTCHP. A final ruling is expected by mid-2022.
In partnership with The New York Times, The Fuller Project published the first in-depth examination of how domestic workers in the Middle East have turned to TikTok to share intimate details of their lives — and the consequences they could face for speaking out. Last August, a young Kenyan housekeeper, Brenda Dama, posted one such video from Saudi Arabia. As words like “freedom” and “respect” pop up on the screen, Dama, 26, swats them away one by one. A single day off? “Don’t got it.” A peaceful life without quarrels or insults? “Don’t got it.” One in a series posted by Ms. Dama, the video has amassed more than 900,000 views — her account gained nearly 5,000 followers in just two days after posting it.
Far from home and in unfamiliar settings, domestic workers in the Gulf — the vast majority of them women — have long used social media to keep in touch with friends and family. Our story documents how they have increasingly turned to TikTok after the platform’s popularity exploded last year, opening up about their lives and working conditions. Many of them say they are overworked, sexually harassed, discriminated against — and the pandemic has further diminished the minimal freedoms they once had.
To give our readers the context they needed to understand stories like Ms. Dama’s, The Fuller Project created an explainer video for social media, styled after TikTok’s platform. It allowed us to reach, inform and engage broad audiences beyond our normal remit — like the youth who are likely to be on TikTok themselves. The final product is The Fuller Project’s most-watched IGTV video to date.
Published in The New York Times online and in print, our story was widely shared among migrant rights and human rights groups, including The National Domestic Workers Alliance. It was covered by KTN, one of the largest news channels in Kenya, and reporter Louise Donovan discussed the implications of her reporting on NBC News Now and BBC’s Woman’s Hour — the second most popular daily podcast across BBC Radio, with 3.7 million weekly listeners. Several New York Times readers reached out to Brenda on TikTok after publication, engaging with her content and asking her to share more about her life as a foreign domestic worker.
The Fuller Project was among the first international newsrooms to capture scenes from the ground as India suffered the world’s most severe outbreak of COVID-19 this March. For weeks, our editors tracked the unfolding crisis in India as western journalists flew in to report for a few days — then left.
Our newsroom saw the urgent need for timely reporting by Indian journalists living through the surge themselves. Setting aside the long-form reporting that typically defines The Fuller Project’s work, we aimed instead to cover as much of one of the world’s largest and most densely populated countries as quickly as possible. We issued a call out on Twitter to reporters on the ground who could capture the sensory experience of the outbreak, receiving dozens of pitches from parts of the country beyond New Delhi and Mumbai, allowing us to cover areas most Western journalists could not gain access to in their brief reporting trips.
The resulting series exclusively features the work of journalists from India and India-administered Kashmir — most of them women. Their reporting centers the voices of India’s most marginalized: women and transgender people, particularly those also oppressed on the basis of religion, caste and class. In Kashmir, fisherwoman Fazi Begum navigated a new economic reality as her clients dwindled; in Manipur, where the Indian army has special powers and an outsized presence, a transgender woman named Lulu experienced heightened anxiety; in Tamil Nadu, construction worker Devi made frantic calls for jobs; in the Rajasthani desert, Taramani relayed her trials as a three-time survivor of COVID-19; in New Delhi, a nurse named Rakhi navigated professional trauma and personal loss.
The Fuller Project newsroom and its contributors worked around the clock to thread women’s narratives into a living archive, highlighting their humanity in their own words. “Gasping for Breath” revealed that content exclusive to our own site can draw a wide native audience — in April and May, the stories were the top read on the site— showing that these voices were clearly missing from the wider media landscape and that audiences all over the world were hungry for them. NBC Asian America took notice of our work, asking to partner as we gathered more stories from the ground. Together, we put out a call to the South Asian diaspora in the United States for tributes to the women they knew in their home countries battling COVID-19 on the front lines — or fighting to survive themselves.
Reporters Louise Donovan and Refiloe Makhaba Nkune spent eight months investigating sexual, verbal and physical harassment at Hippo Knitting, a Lesotho- based factory that supplies Kate Hudson’s Fabletics activewear brand. Interviews with more than 40 employees revealed a network of abuse stretching back years.
Producing garments for prominent U.S. brands has become the backbone of Lesotho’s economy in recent years. But sexual violence at the factories — and the government’s tepid response to the abuse — threatens the livelihoods of thousands of garment workers, ninety percent of whom are women. Thirteen of the workers we spoke to said their underwear and vulvas were often exposed during routine daily searches by supervisors. Another said a male supervisor tried to pressure her into a sexual relationship, and three allege sexual assault by male supervisors. Workers said they were forced to crawl on the floor as punishment and often humiliated and verbally abused by management. In one instance, a woman said she urinated on herself because she was prevented from accessing the bathroom.
The resulting story had impact before it was even published: after Donovan and Nkune reached out to Fabletics for comment, the brand vowed to do “everything in [their] power” to remedy the situation. Fabletics immediately suspended all operations with the factory, flew a “senior leader” to Lesotho within days to conduct an investigation and promised to keep providing workers’ full pay during this period. The owners of Hippo Knitting launched an independent audit and internal investigation, placing the factory’s HR manager on administrative leave — she has since been let go.
The investigation was published in print and online in partnership with TIME, shared widely on social media by workers’ rights groups and covered by global media outlets including The Daily Mail, InStyle, MSN, People, Yahoo and Fox. A version of the story also ran in print in the Lesotho Times, the country’s most widely read newspaper.
Since publication, police say they’re investigating at least three cases of sexual offense and public indecency at Hippo Knitting. “There are more allegations,” a police spokesperson told The Fuller Project, “though the victims are skeptical about reporting in fear of losing their jobs.” At least 12 more employees have stepped forward about abuses, according to unions on the ground in Lesotho — one union, IDUL, says it was our reporting that made these workers feel safe enough to speak up.
In response to our reporting, Hippo Knitting, Fabletics and IDUL have now announced a formal plan to combat gender-based violence at the factory. It includes career development and management opportunities for women, their representation in factory committees and trade union structures, a toll-free number workers can call for assistance and a memorandum of understanding signed with both the Ministry of Labour and Employment and the Ministry of Foreign Affairs and International Relations. Actor Kate Hudson was asked about the findings of our investigation with TIME in a June CNBC interview, responding that the allegations were under investigation, “unacceptable and horrendous.
Hippo Knitting and Fabletics have also launched a corrective action plan for the factory that includes a new grievance procedure for reporting workplace violations, a new anti-intimidation and anti-retaliation policy, and a new process for non-invasive searches that includes dedicated privacy screening areas. Staff from the human rights organization Africa Rising will be on-site during all working hours at the factory when Hippo Knitting resumes production to oversee the corrective action plan.
Lifestyle influencer Melanie Murphy, a former brand ambassador for Fabletics, contacted the brand after our story published for the results of their investigation into Hippo Knitting. In a wardrobe-decluttering video on YouTube this January, she revealed that she stopped working for Fabletics because they never responded — she no longer feels comfortable representing the brand.
Part two of our two-part series with The Telegraph & Kenya’s Daily Nation
During the coronavirus outbreak, Kenya saw another uptick in the number of aborted fetuses and abandoned babies, according to service providers in direct contact with women on the ground. Kabale and Donovan wrote a second, follow-up story digging into the spike. The reasons were varied: schools closures leaving some 13 million students idle for seven months, restrictions on movement hindering access to contraceptives and reproductive health information, as well as global medical supply chains still causing knock-on delays and shortages of contraceptives for some clinics in Kenya.
They told the story through the experience of Ashura Mciteka, a health volunteer who was dealing with aborted fetuses after they’d been abandoned in her local area. After a community landlord read the story, he offered Ashura an office space for one year free of charge. Using this space, she has been able to hold one-day trainings about the dangers of unsafe abortions with pregnant girls.
When COVID-19 first shuttered schools in Washington, DC, and around the country, Fuller Project Co-Founder and CEO Dr. Xanthe Scharff immediately penned an OpEd in TIME noting that the pandemic would quickly become a gender and equity issue, and focusing on the impact of the most vulnerable women workers. The piece forecasted that job losses would be disproportionately shouldered by women and that women with jobs in industries with poor workplace protections would be doubly impacted. With widespread and lengthy school closures looming, a majority of mothers would be forced to miss work, as they are ten times more likely than men to stay home with children. Single working parents, who are four times more likely to be women than men in the United States, would struggle to keep their jobs. The piece also underscored the heightened strain on those without a social support system and how the increase in economic hardships could make women more susceptible to domestic violence. This article drew important attention to the trends which have since defined the “Shecession.”
After this OpEd, Dr. Scharff and Fuller Project contributor Sarah Ryley followed with rigorous, data-backed reporting based on exclusive statistics from 17 states that showed women were the majority of unemployment seekers. The analysis showed that federal data would not reveal this trend for another month – precious time while trillions of dollars of pandemic aid were being legislated.
Dr. Scharff and Ryley provided individual and group briefings on the data to dozens of reporters the Wednesday evening before the Jobs Report release. As a result at least 12 news outlets, ranging from The New York Times to Iowa Watch, covered the story and cited the data. This widely published data underpinned a national conversation in April about the stark gender trends in unemployment three weeks ahead of a federal release of data that showed the same trend. Following the data requests, two states, New York and Oregon, began to release weekly unemployment statistics disaggregated by gender. Building on this investigation, Ryley analyzed the U.S. Bureau of Labor Statistics’ May employment report, finding that women lost 11.7 million nonfarm payroll jobs compared to an estimated 9.6 million for men. Dr. Scharff and Susan Smith Richardson co-authored an OpEd in the Boston Globe calling for the U.S. government to address the shortcomings in federal data releases with regards to disaggregated information related to race and gender. Dr. Scharff has briefed over 80 policymakers, journalists and philanthropists on these findings to date.
