Health activist Lynda Williams, who had terminal pancreatic cancer, at her West Auckland home in June last year. Photo Doug Sherring.
Health activist Lynda Williams, who had terminal pancreatic cancer, at her West Auckland home in June last year. Photo Doug Sherring.
Lynda Williams, the women's health activist, would have been chuffed to have witnessed the passing of what her colleagues have begun calling "Lynda's Law".
It isn't law yet, but it was Williams' tireless attendance at health agency meetings that first brought public and research attention to problems with compensation for patients injured while they are on company-sponsored drug trials.
Williams died at her West Auckland home on Thursday, surrounded by her five children. She was 67. She was diagnosed in October 2015 with terminal pancreatic cancer.
Lynda Williams, who died last week of cancer. Photo / supplied
In a discussion of her life's many achievements in women's health, she told the Herald last year that her bucket list did not consist of adventure activities and overseas trips. Instead, she wanted to complete unfinished business.
Professor Jo Manning, of Auckland University. Photo / supplied
"I said to her that if they pass a law, then it would be Lynda's Law, referring to the fact that she was the inception of it," Professor Jo Manning, of Auckland University told the Herald today.
Williams attended Manning's inaugural professorial lecture last month. The lecture focused on the compensation issue, which has been a important area of research for Manning, a legal academic.
"She had picked up there were these two cases of subjects injured in two separate trials," Manning said, "and they had encountered difficulties in getting compensation from the pharmaceutical companies involved.
"She talked to me about it and encouraged me to do some research."
Government documents indicated departments had put up competing views on whether there should be a law change to return to ACC cover of subjects in privately-sponsored trials.
Business ministry staff had opposed the change but health officials would now run a review of ethical guidance on trials and might look at the wider issue.
"Lynda got on to this. She did the ground work, she went to all the district health board meetings, the HDEC [health and disability ethics committee] meetings, and so she picked up things that were happening."
But as well as having impeccable antennae for stories that mattered, Williams also had a strong sense of fairness and an empathy for the people harmed in healthcare, such as the patients injured in the two trials.
"I remember her saying to me, 'I just can't stop thinking about that, I just can't get him out of my head'."
Williams spent more than 35 years as a women's health activist and carrying out what she referred to as "being a pain in the butt to the health system".
She became a childbirth educator in the 1980s, worked for Fertility Action and later the renamed Women's Health Action, was active in the movement that won the right for midwives to again deliver babies independently of doctors, and for many years was the co-ordinator of the Maternity Services Consumer Council and the Auckland Women's Health Council.
In the rancorous wake of the Cartwright inquiry into cervical cancer treatment at National Women's Hospital in Auckland, Williams was appointed patient advocate. Some doctors branded her a "man-hating, doctor-hating feminist", according to a reviewer who stated he had no evidence to back the allegations, which were denied by Williams.
Former health and disability commissioner Ron Paterson. Photo / Brett Phibbs
Former health and disability commissioner Professor Ron Paterson today described Williams as a vigorous activist who never hesitated in keeping the medical profession and health agencies on their toes.
Manning said: "Lynda was a grafter; she did the hard yards. She wasn't always comfortable speaking publicly, to the media [but] she did it.
"She was highly effective and she leaves a big gap, because we just need these people."
• Lynda Williams' life will be celebrated at a service in Oratia on Monday.
Lynda Williams • March 11, 1950 - July 6, 2017 • Women's health activist • Member of the New Zealand Order of Merit, for services to women's health • Mother of five children and grandmother of six
