It’s ‘denial by delay’: A cancer specialist’s message to Pharmac
Ken Romeril was made a Member of the NZ Order of Merit for his long career as a haematologist and for his work with HIV and blood cancers. He founded Myeloma New Zealand to advocate for its sufferers.
Let’s make one thing crystal clear: effective chemotherapeutic drugs make a tremendous difference to survival outcomes in cancer, and have even cured some forms of blood cancer that 25 years ago had a dismal outlook.
Pharmac was set up to secure funded access to drugs for those most in need. So all hail to Pharmac for last week funding treatment for cystic fibrosis, after batting that away for years.
But note Health Minister Andrew Little explained, this was achieved only because the Government ‘‘stepped in financially’’ to enable funding. It gives the lie to his constant claim that Pharmac is independent of government and that he cannot be involved in funding decisions.
Whatever it took, funding Trikafta is a great development. But it’s not the time for Pharmac or government to relax on medicinefunding, when other suffering persists.
More than 3000 people in New Zealand are living with the deadly blood cancer, multiple myeloma. Each year around 400 new patients are diagnosed, and 200 die.
Myeloma develops from plasma cells in the bone marrow, and is called multiple because 90% have multiple bone lesions at the time it is diagnosed.
I am deeply frustrated with the inability of Pharmac to see what to me is so apparent: the desperate need for access to modern medicines for myeloma sufferers.
There is no doubt they would be handed a much better, longer life should the ‘‘game-changer’’ drug daratumumab be funded. For well over six years I have hammered on the Pharmac door, fighting for this treatment that is standard-of-care internationally.
Pharmac has sometimes used the excuse of a lack of survival data to get out of funding drugs, but cannot in this instance. Mature data has conferred an 11-month survival advantage in relapsed myeloma, while for some cancer drugs that do get funded the benefit is only three to four months.
We are only asking for daratumumab in relapsed disease, and need it as part of a four-drug induction regimen, where the results are amazing.
What do I know that Pharmac doesn’t? I deal with patients, real people, sufferers of many diseases. I hear their grief, and I have seen the miracles drugs can perform.
In 1983, while working as a physician at Kew Hospital in Invercargill, I diagnosed NZ’s first case of Aids. A teenager had a variety of symptoms, and I had read enough to consider Aids was a possibility. He had been to the US.
I sent his blood to Australia (HIV testing was not available here then) and the result was positive. He died of Aidsrelated dementia only two years later, aged 20.
Almost by default I became an HIV expert, and on moving to Wellington and becoming a haematologist, started up the HIV Medicine Unit, with just two dedicated nurses. I saw HIV/Aids patients for about 12 years.
In the first year 18 patients died, due to ineffective treatment options. Then came Hart (highly active retro-viral therapy), which revolutionised the approach to the condition and restored the impaired immune function.
Many Hart patients are alive today, after being on treatment for as long as 30 years. HIV became another manageable chronic disease, like diabetes or rheumatoid arthritis.
Similar massive breakthroughs have been made in blood cancers over the past 25 years.
In 2000, I put a patient on Glivec (a new type of targeted therapy) for his chronic myeloid leukaemia, a disease that could be controlled for up to five years, but then went into ‘‘blast crisis’’ leading to death.
Glivec allowed him to lead a normal life. It was such a breakthrough that the drug was on the cover of Time magazine.
But the story gets even better. We found that if patients achieved a complete molecular remission, the treatment could be stopped in up to 50% of cases. In a decade we went from blast crisis danger to a drug-free life.
Rituximab was another miraculous breakthrough in blood cancer treatment, lifting the cure rate of high grade non-Hodgkin lymphoma from 40% to 70%.
In the US, many transformative myeloma-fighting drugs are approved by the FDA every year, treatments we can only dream about.
We are four years behind Australia in access to myeloma medicines like carfilzomib, pomalidomide, selinexor and of course daratumamab.
These may well be meaningless words to most New Zealanders, but these are household names to those who urgently need them.
In the UK, Pharmac’s equivalent NICE makes a yes or no decision in only three months, so you know where you stand. Here it takes years. It amounts to denial by delay.
Pharmac’s fortress mentality and glacial pace of decision-making reflects a model that is seriously out of touch with international medical practice.
We need an open, modern medicines funding agency whose decisions are fair and timely, and where miracles are able to happen.
What do I know that Pharmac doesn’t? I deal with patients, real people, sufferers of many diseases. I hear their grief, and I have seen the miracles drugs can perform.