Vicky Phelan called herself a “stubborn bitch”. But the tenacity of the Irish cervical cancer campaigner, who has died aged 48, exposed one of the most shocking medical scandals in the country’s history.
Phelan highlighted the plight of more than 200 women like herself who were falsely told their cervical smear tests were normal and only learned years later — in her case, when she was already terminally ill — that the mistake had been discovered, but kept secret.
Following her death on Monday — which doctors had told Phelan could have been prevented had she been correctly diagnosed — Taoiseach Micheál Martin honoured “the poise, determination, courage and compassion she showed in her battle not just with cancer but also with the system that failed her, and so many others, so dismally”.
But Phelan demanded action, not accolades, refusing to put up and shut up after discovering she and other women had been kept in the dark. “I need to know why I won’t get to see my kids grow up,” she wrote in her 2019 memoir Overcoming.
Born on October 28, 1974 in Waterford in the south of Ireland, Phelan grew up in a working-class family in rural County Kilkenny with four siblings. The first in her family to attend university, her degree was in European Studies.
But a student stint working in France ended in tragedy when she was involved in a serious car accident that killed her boyfriend and another friend. After breaking a thigh, ankle, six ribs, collarbone, nose, cheekbone and shattering her pelvis, she had to learn to walk again aged 19.
Her battles continued. After a difficult pregnancy, her daughter, born in 2005 was found to have toxoplasmosis, heralding years of doctor’s appointments as she developed problems with her eyesight and fits.
Phelan struggled with postnatal depression. Shortly before her son’s birth in 2011, recession bit and her husband, Jim, lost his job. Then in 2013, her daughter suffered severe burns when a spark from a fireplace set her clothing alight. Within a few years, amid the stress, her marriage had collapsed, though the family continued to live together on good terms.
She came to prominence in April 2018 outside Dublin’s High Court. After being told she had between six months and a year to live, she sued Ireland’s state health service, the HSE and Clinical Pathology Laboratories, the US lab involved.
She won a settlement of €2.5mn from CPL, with no admission of liability, after refusing to sign a non-disclosure agreement, and demanded answers for the state’s “unforgivable” conduct. “To know for almost three years that a mistake had been made and that I was misdiagnosed was bad enough,” she said. “But to keep that information from me until I became terminally ill, and to drag me through the courts for my right to the truth, is an appalling breach of trust.”
She turned her personal battle into a crusade for change, co-founding an advocacy group; at least 220 other women had been directly affected.
Phelan was diagnosed with cervical cancer in 2014 and underwent chemotherapy and radiotherapy, getting the all-clear the following year. It was only after a routine check-up in 2017 that she was told a smear test in 2011 had been incorrectly interpreted. She had, in fact, had cancer for six years.
The revised results had been revealed in an audit of tests conducted under the HSE’s CervicalCheck screening programme. But the women in question were not told.
While fighting her legal case, and helped by donations from well-wishers, Phelan managed to access Pembrolizumab, an expensive therapy not then licensed for use in cervical cancer in Ireland. She later successfully lobbied for the state to provide other sufferers with the drug.
Her determination inspired the nation. She became a household name, appearing on a TV show last year, her head bald from treatment, to announce her latest attempt to fight her cancer in the US had failed and she was concentrating on making “memories” with her teenage daughter Amelia and son Darragh.
Phelan and other CervicalCheck victims won a profuse public apology in 2019, after an official inquiry. But she rejected tributes to her courage and grit. “I want change. I want accountability,” she wrote in 2020.
She did not survive to see her demand for a bill on mandatory disclosure for patients to become law, or a final report on the screening scandal; both have been promised within weeks.
But President Michael D Higgins said her “enormous contribution to Irish society” lived on.