(CNN)For months, Sharon had been anxiously waiting the results of her pap smear test.
When she hadn’t received her results by the spring, Sharon, who Ireland’s health authority identified only by her first name, started to worry. In April, after first contacting CervicalCheck, the screening program, she sent a series of emails to Ireland’s Department of Health outlining her concerns regarding the significant delay. They told her there had been a general slowdown in turnaround for test results.
By June, after doggedly pursuing answers, officials from the screening program eventually admitted there had been a glitch, saying that “due to an IT issue in the laboratory” her results had never been issued.
And Sharon wasn’t the only one.
Out of 4,088 women who had taken a smear test from December 2018 to July 2019, 873 hadn’t received their tests, according to the MacCraith report, a review commissioned by the health authority into what had happened.
Days later, another woman identifying herself only as Ms. Scullion came forward to the Irish Times, exposing yet another mistake in the cervical screening process.
Scullion, like Sharon, was one of the 873 women who hadn’t received her results for months. When she finally got the letter in August, it said that she had tested negative for human papilloma virus (HPV). But Scullion knows that she’s HPV positive.
After she made her story public, Ireland’s health service, the HSE, said that over 400 women had also received a letter with an “inaccuracy.”
The revelations have marked yet the latest chapter in a years-long controversy over cervical screenings that has rocked the country.
And by challenging the system, Sharon and Scullion have joined a group of women whose push for answers have unearthed a cataclysmic series of scandals within the health service, controversies that continue to raise questions about what womens’ rights activists view as the prevalence of institutionalized misogyny within it and Irish society.
Dr. Mary McAuliffe, historian and lecturer in Gender Studies at University College Dublin, says the government’s response to the problem demonstrates that women are not a priority.
McAuliffe told CNN that current attitudes in the government reflect an “almost unconscious demeaning of women’s health and women’s bodies” where “women’s bodies and the risk to women’s bodies are not important — and in particular their reproductive bodies and their health care is seen as secondary to maybe money, to power, and to a patriarchal system that has always seen women as second class citizens.”
Ireland’s Department of Health did not specifically address McAuliffe’s allegation in comments to CNN, but did say that the government is soon expected to issue a formal apology to the women affected by the failures of the screening program in the next Dail (parliamentary) term.
‘They knew I was ill’
The failures of that program all started in 2011, when Vicky Phelan, a mother of two, received a letter in the mail from CervicalCheck, confirming a negative pap smear test.
Three years later, she took another one, and it came back positive. In July 2014, Phelan was diagnosed with cervical cancer. Before she was diagnosed, unbeknown to her, an audit was carried out on the first test.
That audit found that the results of her 2011 test had been inaccurate, and that there had been a strong indication of cancer.
Phelan began aggressive treatment on the cancer, and it went into remission. But in 2017, the cancer came back in the form of an inoperable 10-centimeter tumor. Phelan’s doctor told her that it was terminal and that she had a year or two to live.
He then told her about the audit, which had taken place three years earlier without her knowledge. Phelan sued.
In April 2018, Phelan took the HSE and the US-based lab that had been outsourced by the HSE to analyze the results to Ireland’s High Court.
Her lawyers argued that if the cancerous cells had been correctly detected in 2011, Phelan could have had a hysterectomy, and would have been given a 90% chance of survival.
She was awarded a 2.5 million euro (approximately US $2.8 million) settlement with Texas-based Clinical Pathology Laboratories Inc and the case against the HSE was dropped. As part of the settlement, CPL did not admit any liability, but its lawyers did press Phelan to sign a non-disclosure agreement.
“They knew I was very ill, and I think they were hoping that I would sign the non-disclosure because they knew I was so sick. They thought, ‘Why would this woman fight when she’s clearly sick?” Phelan, 44, told CNN.
In researching her own case, Phelan and her lawyers discovered that there were about ten other women in her same position, who had yet to be informed about their incorrect smear test results. That number would later swell to more than 220 women.
“I knew it wasn’t just about me. I couldn’t in all conscious sign anything if I knew that the other women affected would not find out,” she said, adding that she wasn’t willing to let the authorities sweep their stories under the carpet.
“If I’m going to die, I’m going to bring them down with me,” she said.
‘Why didn’t you tell me?’
A month after Phelan’s day in court, the HSE confirmed that at least 209 women had been given inaccurate smear tests, all of whom were subsequently diagnosed with cervical cancer.
Eighteen of those women had already died not knowing they had been misdiagnosed. Since, it’s been discovered that at least 221 women were misdiagnosed.
In a May 2018 statement, the CervicalCheck screening service said that “on look-back, the screening test could have provided a different result or a warning of increased risk or evidence of developing cancer” for those women.
The government soon established a “scoping inquiry” into the screening program. Its findings, supported by the advocacy and campaigns of terminally ill women, such as now deceased 37-year-old mother of five Emma Mhic Mhathúna, were published by Dr. Gabriel Scally in September 2018.
The Scally report found that the screening program was “doomed to fail,” and made 50 recommendations to combat problems that it said were “redolent of a whole-system failure.”
The report drew from testimonies of some of the women affected by the misdiagnoses, which revealed a troubling account of a medical culture seemingly content with keeping patients in the dark.
“He (the doctor) had seen I had had a hysterectomy and decided I didn’t need to know,” read one woman’s account.
Another woman recalled an exchange with her doctor, who asked: “Why didn’t you tell me? Why didn’t you tell my clinicians?” The doctor responded, “What difference does it make?” Pressing her doctor further, the woman asked how she would be informed in the future.
“Watch the news,” her doctor said.
And in another piece of testimony, described by Scally as “one of the most disturbing accounts,” a close relative of a woman who had died detailed that during the disclosure meeting, the woman’s doctor mentioned “several times that the late woman was a smoker (it is known that smoking impedes the body’s ability to clear itself of the HPV virus) and they were also told that ‘nuns don’t get cervical cancer.'”
Addressing Minister for Health Simon Harris in the report, Scally praised the “extraordinary determination of Vicky Phelan (to) not be silenced,” and recommended that women and the families affected by the controversy “should play a prominent part in the oversight of these reviews.”
Harris commissioned Scally to provide a follow-up report, which stated in February that although the government had made steps in the right direction, “it is notable that the previous policy, which has been judged to be deeply flawed, remains in place.”
In June, Scally delivered a final report and addressed the outsourcing of the lab work. He said that “the lack of transparency by the major private sector laboratory companies about the precise locations of their screening services provided to CervicalCheck, and therefore to Irish women, is entirely unsatisfactory,” and that the tendering process “appeared to move over time to place an increasing emphasis on price rather than quality.”
A ‘drip’ of information
Dr. Cliona Loughnane, Women’s Health Coordinator at the National Women’s Council of Ireland, told CNN that it’s “completely unacceptable” that it is only through the actions of women challenging the health system and being persistent in trying to seek access to their own health information that the public is learning about system failures.
“There’s been a drip drip of information about problems coming out. The onus shouldn’t be on the individual, the onus needs to be on the system,” Loughnane said, adding that now is the time for full disclosure so that the system can improve.
In a statement to CNN, the HSE said that it is “absolutely focused on improving women’s health and working with women in doing so.”
“Since the CervicalCheck crisis happened last year, significant work has been done to engage women in co-designing and improving our screening services. Specific actions have included patients being co-opted on to project groups within our screening services,” it added.
Both the MacCraith and Scally reports have recommended that the government and health service start adopting a “women first” approach.
Although historian McAuliffe welcomes any progress they might make, she says that she isn’t holding her breath, noting that while Ireland appears to have progressed in terms of women’s rights, the state has a historically skirted grave violations when it comes to women’s reproductive autonomy.
She referenced the Magdalene laundries (workhouses where unmarried mothers, victims of sexual abuse, orphans considered a burden to relatives or the state, or others with mental or physical disabilities were sent to work and live without pay), the mother and baby homes (church-run institutions where unmarried mothers were sent to deliver their children) and the controversial surgical practice of symphysiotomy, where a woman’s pelvis was broken during childbirth without consent.
“While we may have a process now where it seems like we have equality within the state and within this society, the structures that always judged women’s bodies as secondary and as not as their own still remain in place,” McAuliffe said.
“No one is held accountable and it keeps going and going. I think they think we will just get tired and all go away,” she added.
But Irish women are not going away.
Phelan says one positive that has emerged in the last year is that Irish women are feeling more empowered, and speaking up and rejecting the power that the Catholic Church and “old Ireland” once held over their bodies.
Referencing the country’s landmark referendum on abortion, which passed around the time that the CervicalCheck scandal emerged, Phelan said that the last year or so has shown that women are “coming out of the woodwork and not willing to put up with this type of treatment anymore.”
McAuliffe argues that “it shouldn’t be left up to individual women to basically shame the government into doing something right. We are part of this society and deserve the best. The fact we have to campaign for it over and over again is not acceptable.”
But for now, that appears to still be the case.