A paper round helped female 9/11 responders get healthcare

Hi everyone, 

September 11th is a date of such significance, you can physically feel it. The simultaneous attacks on the World Trade Center in New York, the Pentagon in Washington DC, and the thwarted attack that brought down a fourth plane, have left an indelible mark on recent history. 

The shockwaves from that one day are still felt today by people far and wide – from CIA prisoners detained for over 20 years without trial, to New York City residents living with the life-changing consequences. 

In 2001, Donna Malkentzos worked as a detective in the New York Police Department. In the weeks following the attack on the Twin Towers, she and her colleagues sifted through nearly two million tonnes of World Trade Center rubble at the Staten Island landfill, the official forensic site for debris, looking to identify 9/11 victims.

Donna remembers the dust. It hung in the air for months. It settled on the lunches she carefully packed in the morning, hoping to keep her food protected as long as possible. It coated the toilet paper she used in the on-site portaloos. Without proper protective gear in the early stages of the recovery efforts, she inhaled the dust for weeks — along with the toxins it carried.

She developed asthma and rhinitis, common among first responders like her. The care she needed for these conditions was covered by the World Trade Center Health Program (WTCHP), the federal government programme that monitors and treats 9/11-related health issues.

Then, in 2013, Donna developed uterine cancer. She thought she would get the same medical care through the programme as many other cancer patients did. But the programme administrators told her uterine cancer wasn’t covered. The government’s reasoning was a lack of data linking the disease to 9/11 exposure.

“That sent up the red flags for me,” said Erica Hensley, a Fuller Project reporter who picked up the story. “Because women always get excluded from things when they’re not included in the data.”

Erica dug around. She analysed the surveys that New York City authorities had sent out in the months and years after the attacks collecting information on how people were affected. “None of the surveys asked about female reproductive health other than pregnancy, which is a sad cliche of women’s health data gathering,” Erica told me.

The data from those surveys would form the screening for the first cohort to be covered by the programme – but women made up less than a sixth of the group. Years later in 2023, under a quarter of those treated by the programme were women, even though they make up about half of those who are eligible. 

At the time Erica was reporting, there was no official tally of uterine cancer among the Ground Zero population because no agency had researched it – though there were likely thousands of cases.

“It was a terrible catch 22,” Erica said. “There was no data because they never collected it.” 

The upshot was that for years uterine cancer was the only cancer not approved for coverage by the programme, while cancers like prostate cancer had long been included. 

“How can I put this nicely?” said Donna, whose cancer led her to have a hysterectomy in 2013 and then recurred twice since. “I was truly enraged.” For Donna, it was not just about the burden of getting her medical costs covered. “It was about the lack of acknowledgement,” she told me. “You’re not acknowledging me, but those with other cancers are getting acknowledged straight away.”

Health advocates banged the drum for years. Non-governmental research began to reveal the link between Ground Zero dust and uterine cancer. At the end of 2021, the US national public health agency recommended that uterine cancer was added to the health programme. But still nothing happened.

Here’s where Erica and the team at the Fuller Project pulled a canny move to give that extra shove, on top of the pushing and pushing so many advocates had been doing for years. For the story Erica published on 9th January 2023, the Fuller Project partnered with The Star-Ledger, one of the oldest papers in the country and one that would land right on the doorstep of someone with some key political clout: Frank Pallone. Pallone is a New Jersey congressman whose district includes many 9/11 survivors and first responders. 

“The next day his communications team emailed to say Frank had moved to ask for a change in the policy,” said Erica. Within weeks of Erica’s report, a ruling was made that uterine cancer patients could immediately apply for the programme.

“Finally,” Donna told me. After years of stigma and being made to feel like they didn’t deserve these benefits, women with uterine cancer had the bare minimum they deserved. 

Erica called up the authorities in August this year to see how things were going. She told me 441 people with uterine cancer are now enrolled on the programme. It’s made a difference. Some of the people Erica spoke to at length have told her that they wouldn’t be around today if it weren’t for her reporting. 

“That’s hard to hear and hard to accept,” she told me. “Advocates have been working on this forever, saying that women have been ignored, not prioritised. What I was doing was uplifting their work and broadcasting it to a wider group.” 

Donna told me it was as much about how Erica went about her business as anything else. “It makes a difference if someone really listens and really wants to see the outcome positive for you.”

Donna’s in remission now, long retired from the NYPD and living in a New Jersey coastal town. She is admirably sanguine about the impact her cancer has had on her life. “If anything, I think I have an advantage over most people,” she said. “I know you can go at the drop of a dime, so I think I appreciate things more.”

But she feels the battle is far from won in terms of health impacts on women. Donna wants to see much more research – and in fact, Erica and the team at the Fuller Project followed up their reporting on this issue with a series on the ways women are left out of medical research.

“People do care about women’s health,” said Erica. “We just have to fight to get their attention on it.” 

To keep up with Erica’s dedicated reporting, follow her on X.

“I’d never taken part in a journalism project before. I don’t feel like the media always reflects things that are important to me. You turn on the news and it’s not really saying anything interesting, it’s normally just about politics.

And when it comes to heat in the home in summer, I’ve never seen anything about that in the media. They just haven’t really spoken about it much at all. So it was good to see heat at home front and centre. I have a lot of history with issues of mould and heat and cold in my property so when I saw [the call-out for the Hot Homes project] I thought ‘why not?’

My son has cerebral palsy and the heat affects his mobility. It meant a lot to me to find out exactly what was happening in my home. It made me aware of something that I didn’t know was going on. 

 ~ Kathleen was one of a number of people who took part living in stifling conditions due to communal heating systems that they cannot switch off. The Guardian has reported that residents of flats with district heating systems had experienced rises of up to 700% in their bills. ~

I was spending more money on gas and electricity every week. I’d top up every week and my energy bills were not in line with my low usage.

Since taking part, I’ve contacted the council and spoken to them about the problem with the heater coming on all the time in summer. The project sparked me off to do something about it. And they’ve fixed it! So it’s not on all the time now. Having the data about my home definitely opened up that avenue and made it easier to get through to the council because they don’t listen to you. It felt rewarding to get it sorted.

~ The Hot Homes team presented its findings to representatives from Southwark Council, who were shocked by what they saw. Earlier this year, Southwark Council pledged to invest £1m to protect the most vulnerable areas against the impacts of the climate crisis, citing TBIJ’s “landmark study” in its announcement. ~

To find out that through Hot Homes we were able to get the council to say something like that – and I’m hoping that they stick to what they say! – but for them to say something like that is amazing. 

The project made me see something that I never thought about journalism before and changed my view on it.”

That’s it for this week, Sparkies. As always, let me know if you see a story you think I should be looking into.

Take care,