HOW far would you go if you were told that you had an incurable cancer and just 12 months to live?
I went 12,000 miles to save my life. After being declared terminally ill two years ago, I moved from Melbourne to the UK to enter a clinical trial of an experimental drug at Barts Hospital in London.
There were only 75 of us on this trial worldwide. Three months later I was in complete remission. Six months ago I was told I had no detectable cancer.
But fewer than 3 per cent of terminally ill patients can access such trials. And drug companies are wary of opening compassionate access schemes because adverse effects outside of trials could affect their drug’s approval.
This means dying patients have to wait for phase 1, 2 and 3 clinical trials, where the experimental treatment is randomised against the existing treatment in an antiquated system to get drugs to market. My drug for chronic lymphocytic leukaemia has taken 30 years to reach that stage.
My drug has since received Therapeutic Goods Administration approval — but it is still not available on pharmacy shelves.
In a cruel case of irony, the drug was created in Melbourne. But I am still forced to make the long, expensive journey to the UK every three months to give a blood test and return with my daily supply.
All this is so I can receive an Australian-created drug that is available to me in the UK, but not here. It’s also been approved in the US, but not here.
This cruel absurdity puts lifesaving drugs out of reach and must be dealt with.
In Victoria, where the government is pushing ahead with assisted-suicide legislation giving terminally ill patients the right to end their own lives, the question needs to be asked: why can’t we introduce “right-to-try” legislation, which would also give them the right to try and save their life?
Right to Try laws are commonplace in the US.
They were created to enable terminally ill patients to try experimental therapies that have completed phase 1 testing but not yet been approved by the Food and Drug Administration.
Right to Try expands access to potentially lifesaving treatments years before patients would normally be able to access them. No one can guarantee that a particular treatment will be effective, but these laws return choice and control over treatment options to where it is most effective: with patients and their doctors.
I was only 40 years old, with three young children, and I was prepared to do whatever it took to be here for them. Wouldn’t you want the option to try anything to save your life?
Right to Try laws are designed to help the other 97 per cent of patients who cannot enter clinical trials. It has been signed into law in 37 states in the US — helping to eliminate the legal barriers to access. The legislation has its roots in the HIV epidemic, as realised in the movie Dallas Buyers Club, where people with the virus sought access to experimental drugs through sometimes illicit means.
But the current spate of legislation began in 2014, thanks to the work of the Goldwater Institute, a Phoenix-based libertarian think-tank that objected to what it saw as unnecessary government interference between patients, their doctors, and pharmaceutical companies.
Right to Try has been endorsed by the Trump administration with the support of Vice-President Mike Pence, which has given the movement added momentum.
Some physicians, ethicists, and regulatory officials say the laws could harm more patients than they help — but who could argue with any one patient’s quest to save his or her life?
If a doctor believes an investigational drug is your best hope, they can then initiate contact with that drug manufacturer’s compassionate-use program to discuss options for access.
Few diseases exemplify the need for Right to Try legislation more than motor neurone disease — the average MND patient survives less than 2½ years post-diagnosis.
There is only one approved medication and it extends life by only a couple of months. Patients die before clinical trials can go through their phases.
Right to Try offers hope to people with no other options.
By allowing dying patients to conduct their own trials, under doctor supervision, we will discover uses for drugs under conditions scientists had not expected.
There are passionate views on both sides of the assisted-suicide debate. Surely everyone can agree that, first and foremost, we should know whether we have done all we can to save a life.
Had Right to Try legislation existed in Victoria, ironically the birthplace of my drug, Venclexta, I and many other patients would have been able to access it outside of a clinical trial.
I am lucky I managed to get it; others are no longer here to share their stories.