When Avon Grace first became a mother in 1969, it was something of a miracle.
As a young wife in her early twenties, she struggled for years to get pregnant, before seeking help for infertility.
While women today have access to stacks of information, technology and support, in 1968, Avon was prescribed pills, then given an injection of hormones known as human pituitary gonadotropin (HPG).
Now at 71, the mother-of-two and grandmother of an eight and four-year-old, can still recall the emotional toll infertility took on her and husband Ted (78).
“It was pretty damn devastating. All my friends were getting married and getting pregnant, and people would ask, ‘Why aren’t you having a family? You should be having a family.’ Well, it didn’t work like that,” Avon recalls. “My doctor in Taihape knew a professor at National Women’s Hospital and they were using this fertility drug, but I didn’t know what it was made of or what it was.”
Avon was prescribed clomiphene, an oestrogen-blocking drug still used today. But after taking the pills over several months, she failed to get pregnant. As a last resort, her doctor recommended HPG.
“When I didn’t have any results from the pills, they sent this other drug down to my doctor and that was the human pituitary gonadotropin.
“At the time, they were also giving it to children who had stunted growth problems to help make them grow. I didn’t really know what I was being given and I didn’t even think about anything that might happen,” she tells.
Human pituitary hormones and human growth hormones were first extracted from cadavers from the late 1950s and used to treat patients in the UK, Europe, US, New Zealand and Australia. In 1985, they were banned after they were found to be associated with Creutzfeldt-Jakob disease (CJD), a rare, fatal brain disorder that can lay dormant in brain tissue, the nervous system and spinal cord fluid, even after death.
HPG was banned in the mid-‘80s and replaced with urinary folicle-stimulating hormone (FSH) from menopausal women. Recombinant FSH is used today. Women taking modern-day fertility treatment are not at risk of developing Creutzfeldt-Jakob disease.
Avon fell pregnant with her son when she was 24 and went on to have her daughter two years later by using clomiphene. But in 1992, she received an alarming letter from the Ministry of Health explaining that she was at risk.
“It was pretty shock horror when we found out about it,” Avon recalls. “If you’ve ever seen cows with mad cow disease, you’ll know what CJD is like. You lose all control of your balance and just disintegrate. They can’t fix it – once you’ve got it, that’s it. It’s curtains.”
By the time the link was discovered, 30,000 patients had received the hormones extracted from cadavers. Two hundred people who received human growth hormones, mainly in France, UK and the US, later died from CJD. In the early 1990s, four cases associated with HPG were identified in Australia.
They were women who had received the hormone in the 1970s as an infertility treatment. While Avon says she can have brain tissue tested to see if she’s a carrier, it puts her at risk of bringing the disease to the surface if she has it.
“I was told that the only test they could do would be to take a sample of my brain and I said, ‘No, nobody’s going near my brain!’” Avon explains. “The only way they will be able to tell is by doing an autopsy and I’m not quite ready for one of those yet.”
The chance that Avon will develop CJD, which usually presents itself within 15 to 30 years if it’s active, is extremely low. The disease cannot be transmitted through the air or through touching, but can be spread through exposure to brain tissue and spinal cord fluid.
While Avon has lived a happy, healthy life, a few years ago, she started to experience back pain. She was set to undergo a spinal fusion operation late last year, but after answering medical questions while being prepped for surgery, the operation was ruled out.
“They can’t operate on my spine because they’d be dealing with the spinal cord and it’s enclosed in this membrane called the dura, which is where this bug attaches itself,” Avon explains. “If they puncture that, and if I’m a carrier, it could set the disease off. There’s no way I can have this operation. It’s far too risky, for me and for them.”
The risk is taken extremely seriously because it’s not only Avon who could face problems if she has the surgery. While sterilisation of medical instruments has significantly improved over the years, there is still no way to ensure they won’t be infected with the disease, which can be passed on to other patients.
In 2007, a patient at Auckland Hospital experienced signs of CJD after undergoing spinal surgery. In total, 43 patients, including some children, who may have come into contact with the medical instruments used in her operation were notified as possibly being at risk. It’s a thought that concerns Avon.
“How many women have had this drug not knowing what it was?” she asks. “There might be a whole heap of them, but they may not need to have spinal surgery.”
Avon doesn’t blame the doctor who treated her, but she says the Ministry of Health did not inform her that any spinal or brain surgery would be a major problem. She’s now having to deal with her back pain with strong painkillers and has no idea what the future might bring.
“I wouldn’t have had the drugs had I known I could possibly have contracted CJD, but no-one knew otherwise then. It took many years before problems were detected. We would have tried to adopt a couple of children,” Avon says. “You just live with it. You have to get on with your life – there’s nothing you can do about it.
“But my worry is how many people may be out there who can’t remember what they had, aren’t on a list anywhere that could be endangering other people’s lives, that’s what really worries me.”
Medsafe Acting Group Manager Chris James says:
“One hundred and fifty-nine New Zealanders who had received batches of human-derived growth hormone, prior to 1985 and linked to this infection, were notified and provided with advice on limiting the risk of spread to others – for example, not donating blood and ensuring that health practitioners were aware of their medical history.
One hundred and fifty-four Kiwis who received similar batches of human-derived pituitary hormone were also notified and provided with advice.
Anyone who has received human-derived growth hormone or pituitary hormone treatments in the ‘80s or earlier should talk to their health professional in the first instance.”
Words: Anastasia Hedge