For patients with life-altering illnesses, and for those who love them, this has been a heartening and disheartening week, depending on the luck of the diagnosis draw.
Health Minister Simon Harris’s decision not to block an independent bill legalising medicinal cannabis as it begins its journey through the legislative process is an encouraging sign of patients being put before politics.
It is only the start of the journey. Separately, Mr Harris has asked the Health Products Regulatory Authority (HPRA) to report to him by the end of next month on how he might proceed with making medicinal cannabis available in a safe, effective, and controllable fashion, and it might discover unforeseen barriers that could complicate matters.
But the fact that he has tasked the HPRA with finding a way to do this, rather than simply farming the matter out for a general review, shows a clear intention to act in spite of the inconclusive clinical evidence of the drug’s effectiveness.
Contrast that approach with what has been happening in relation to Orkambi. The cystic fibrosis drug has transformed some patients’ lives but, a year since it overcame all regulatory hurdles and entered the market, there is still no agreement on how to keep the transformation going.
For months, there have been arguments over whether Orkambi really is a wonder drug, whether it makes economic sense, whether economic factors hold too much sway in the debate, and whether the figures being used in the economic analysis are correct.
It is not even clear if a decision has been made to buy or pass on the drug — a leak to a Sunday newspaper said the latter but Mr Harris insists no conclusion has been reached.
Now we have the manufacturers, Vertex, writing an open letter disputing the minister’s claims that they haven’t engaged wholeheartedly in the price negotiations. They say they want to provide the drug, the minister says he wants to buy the drug, and yet the conversation has become increasingly tetchy and unproductive.
The Health Minister now wants to join forces with his counterparts in other countries to force Vertex to cut its prices. A good strategy or a bad gamble? Is he looking to gear up negotiations or gang up on one side?
For the patients awaiting word of whether they’ll get to continue their trial of Orkambi, and particularly for those who desperately want and need the opportunity to start on it, the dispute must be exasperating.
The drug is hugely expensive, but so too are the isolation wards and intensive care units where many CF patients find themselves repeatedly when their health takes a dive; so too is the cost of simply maintaining a person as a lifelong recipient of welfare and acute medical care when that person could be thriving in the workforce, assisted by a home-based medication regimen.
The fact is that, after the short-lived exclusivity, Vertex will have over Orkambi, the patent will run out, generics will be developed, and prices will fall, so it would be a short-term pain for generations of gain.
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