Fighting the medical system: Kerri Cassidy’s crusade for her controversial MS treatment
A breakthrough halted Kerri Cassidy’s multiple sclerosis symptoms. Now she’s fighting so it can help others. Beverley Hadgraft reports on Australia’s own Lorenzo’s Oil case.
Walking into Kerri Cassidy’s bungalow, there is a step. In most homes it would be insignificant. Here, it speaks volumes. A few years ago, her husband, Glenn, wanted to level it. He could see that his wife’s MS (multiple sclerosis) was degenerating.
“I needed a stick for balance. I was really weak,” she recalls. “The kids had to get themselves to school because sometimes I wasn’t out of bed before they left. I’d start dinner at 10.30am, when I got up, and it would take me all day to cut up vegetables.
“It was really frustrating – and really depressing.”
Kerri still has MS, but she bounces up that step now. She is just back from a holiday where she walked 230km in three weeks and is about to complete a degree in psychology.
She has videos of herself six years ago holding a huge plastic sack filled with medicine, sitting in the bathroom miserably willing her bladder to work.
Now, she takes no pills and the catheter she once wore is gone.
Kerri discovered a blockage in a vein delivering blood to her brain and improving that flow with angioplasty – inserting and inflating a small balloon – has transformed her life. Many other people with MS have had their lives changed for the better, yet the treatment has polarised doctors.
MS patients may no longer have the treatment on Medicare, even though everyone else with blocked veins is subsidised, and advocacy group MS Australia suddenly withdrew their support for an approved clinical trial at Melbourne’s The Alfred hospital.
Undeterred, Kerri has battled on to raise funds and awareness herself so the research can continue. The results of the trial are attracting international attention and, in November, Kerri’s efforts will be recognised at the National Disability Awards.
Yet not everyone is thrilled. Kerri is often heckled on social media by those accusing her of giving false hope. Some neurologists have put the
treatment in the same category as having amalgam fillings removed or submitting yourself to bee stings. Taking control
So why doesn’t Kerri just get on with enjoying her new improved life? “Because she cares,” says supporter and MS ambassador Maree Thomson.
Initially a sceptic, Maree, 60, had angioplasty this year. Her neurologist, she says, told her not to waste her money, but life was careering downhill.
Due to the MS, Maree retired as a teacher at 39, had lost count of the falls and broken bones she’d suffered and was using a motor scooter.
Yet, despite decades of inactivity, six months after doctors opened a blockage in her jugular, she could walk a kilometre and recently managed a small jump. “I can’t remember the last time I jumped!” she exclaims.
“I’m not a crier,” she says and then proceeds to weep as she recalls how her life has improved. “I exercise more, sleep better, have less stiffness.”
She paid $5000 for her unsubsidised surgery. Pre-surgery, the government was paying $24,000 a year for her medicine. Now, she doesn’t need it.
Australia has more than 23,000 MS sufferers and it’s a cruel degenerative condition, usually striking people aged between 20 and 40. There’s no cure and the cause is unknown.
Kerri was 31 when she was diagnosed. She’d tumbled over in a parents’ race at her children’s school and was tired, but tests found nothing wrong. Then, after her feet went cold and numb, she saw a new GP.
“She looked at my history and said, ‘I think you have MS’.”
After the diagnosis was confirmed, “Strangely, I felt relief,” Kerri recalls. “I thought I could get on medication and continue with the rest of my life.” It wasn’t that simple.
Kerri couldn’t walk without a stick. Her memory was severely impaired. “I had to write down everything.”
She developed optic neuritis, her vision clouded and concentrating on her work as an accountant became so painful she had to quit.
She couldn’t urinate, her medication made her manic, bloated and carried a risk of joint damage. Every month, she had to travel to hospital for an infusion of an immunosuppressant, a drug that even six years ago cost $37,000 a year.
Glenn took a lower position with less travel at his work at World Vision and would often come home to find his wife sitting on the floor, weeping.
By January 2010, two years after her diagnosis, Kerri’s prognosis was so poor her neurologist told her all he could do was treat her symptoms.
“I thought, ‘Crap. That’s me done’,” she says. “It took me a month to pull myself out of that place. But MS is highly variable. I decided to try some things that were in my control.”
Improving circulation
Kerri began posting videos about her MS online and, one day, a supporter sent her a message about research by an Italian, Dr Paolo Zamboni, whose wife had MS. He claimed that some MS patients also had blockages in their brain drainage; unblocking them may help relieve their symptoms.
“I was wary,” Kerri says. “Everyone has advice or the latest cure, but it did make sense. I’d always felt I had circulation issues.”
In February 2010, an ultrasound on her neck confirmed a narrowing in her jugular veins plus valve issues. At The Alfred hospital, cardiovascular radiologist Professor Ken Thomson told her he didn’t know about MS, but he did know about veins and hers weren’t normal, so it made sense to make the blood flow more efficiently.
The procedure was done under Medicare and Kerri returned to her Dandenong Ranges home in Victoria.
“After three days, I could see better,” she says. “I’d been thinking of complaining about the green traffic lights because they looked yellow. Suddenly, I realised they were fine!
“I had energy, I could clean my whole house. Two weeks later, I had a bath. Before, the heat would overwhelm me, I’d lie on the cold floor to recover, then go to bed because I couldn’t walk. Now, I got out and felt so normal, I danced with happiness.
“A few weeks later, my walking had improved so much we went camping and I walked two kilometres. My bladder control improved and my kids – Mikayla, now 17, and Sam,
15, [pictured opposite with Kerri] said I was more fun. I cried when they said that. I tried to be a good mum above everything, but I was training them not to need me.”
Most important of all, Kerri started spreading the news.
Dozens more had the angioplasty in Melbourne and Sydney, also on
“Weeks later, my walking improved so much I walked two kilometres.”
Medicare. Many patients reported improvements, she says. Then, without warning, she got an email from The Alfred. They couldn’t see her as a patient anymore. A clinical trial would have to be conducted before they could see any more MS patients.
Kerri was outraged. How could treatment be withdrawn when anyone else with a blocked vein would automatically be treated? She and other patients contacted the Equal Opportunities Commission.
It was agreed those already being treated could have ongoing care. However, no new MS patients would be admitted until a clinical study proved the procedure had merit.
Funding research
Professor Thomson started designing the study and the MS Society helped Kerri raise the $450,000 needed. Representatives from MS Australia joined her in Canberra in June 2012, lobbying for government support.
Three months later, MS Australia phoned Kerri to say it was withdrawing support and money, but would hand over the money already collected.
MS Australia CEO Deidre Mackechnie says, “We would always want to support treatments that might show signs of achieving something, but there really isn’t clear evidence around this one.”
Kerri was devastated. “I felt betrayed,” she says. “Even if the study concluded the treatment was useless, the question would be answered.”
The cost of a deteriorating MS patient is shocking. In 2010, the financial burden in Australia was nearly $1.04 billion a year. “I don’t understand why MS Australia and neurologists seem reluctant to support non-drug therapies,” Kerri says. She has raised $320,000 and 35 people have been through the trial, with another 35 due soon. People in wheelchairs with extreme nerve damage reported benefits. One has been able to do needlework again. Another can drink tea by herself.
First, the MS patients were tested for abnormal brain drainage –
80 per cent had abnormalities. Half of that 80 per cent received a placebo, but this group showed no benefit. The entire 80 per cent group then underwent an angioplasty – about a third had little improvement, but most had some or significant benefit. The study will continue in order to prove that those improvements weren’t random so the treatment can requalify for Medicare.
Kerri’s now looking forward to getting back to work. “On a bad day, my hand doesn’t work, but
I can live with that,” she says.
She doesn’t claim angioplasty is a cure for MS, but it could be key to unlocking the cause. “This could have links to Alzheimer’s and Parkinson’s as well,” she says.
“There really isn’t clear evidence around this study.”