Monday 16 September 2019

Drugs giant must stop putting super-profits before humanity

Cystic fibrosis sufferers deserve the chance to have their pain alleviated, but Vertex should cut the bill, writes James Reilly

Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.
Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.

I can only imagine how stressful a time the last number of months must have been for our citizens who suffer with cystic fibrosis (CF) and their families and friends, amid the storm that has developed around the funding of Orkambi. The drug has the potential to help around 25pc of the 550 patients who suffer from a particular strain of CF.

Orkambi is the brand name for lumacaftor/ivacaftor, a combination drug available as a single pill that was developed by Vertex Pharmaceuticals of Boston, Massachusetts.

The National Centre for Pharma Economics (NCPE) concluded last week that at an annual cost of about €160,000 per patient being demanded by the company, Orkambi was unaffordable for State funding. Professor Michael Barry, of the NCPE, said: "We did say in our report that we felt the price would have to fall to about €30,000 per patient per year to render it value for money."

The development of this drug should be a good news story for CF sufferers. There is a long and proud tradition of scientists bringing innovations to the world that have enhanced and prolonged our lives. We should be celebrating this breakthrough but instead this great innovation is soured because of what I believe is greed.

Many countries, including our own, give significant incentives for research into the development of new drugs. Many patient advocacy groups and charitable organisations collect hundreds of millions of euro which they donate toward drugs research. This goodwill should not flow in one direction only.

When I was health minister, the European Council of Health Ministers came to an arrangement where EU countries agreed to come together to buy vaccines. I believe that the time has come for the current European Council of Health Ministers to come to a similar arrangement in relation to new drugs purchased. No drugs company can afford to ignore a market of 500 million people in a First World economy.

I would be very much aware that pharma companies spend significant amounts of money in researching and developing new drugs, and that they are entitled to a reasonable return on their investment. However, without specific detail on the costs of researching the development and production of this drug, I can only assume that the company is seeking to make supernormal profits at the expense of a small but very vulnerable group of Irish citizens. This detailed information should be put into the public arena. To put the matter in context, the estimated cost of the new proposed paediatric hospital is ¤800m and the potential cost to the State of this drug over the next five years could be up to ¤400m. This is clearly out of kilter.

When, as health minister, I approved public funding for the use of Kalydeco for CF patients, it was with the knowledge that it was effective in nearly 100pc of cases where it was indicated. This is not the case with Orkambi, where there is only a 25pc success rate. I believe that, in order to move this issue from the current impasse, Vertex, as an act of goodwill and in the best interest of CF patients, should agree to a risk-sharing arrangement and charge for the drug only in patients where treatments have been successful.

It is worth noting that this country has a vibrant pharmaceutical industry which has been encouraged to undertake research into the development of new drugs which can improve patient well-being and prolong life. However, this is not of much use if the drugs developed are so expensive as to put them out of reach of our citizens.

I read recently that the CEO of Vertex was awarded a remuneration package of $28m and that senior executives were awarded bonuses of $3m-$4m. I think in this situation, Vertex needs to put the needs of patients first and those of senior executives and shareholders second.

I welcome the news that Vertex has returned to the negotiating table. For the sake of CF sufferers and their families, I hope that common sense and reasonableness will prevail and that agreement can be reached soon.

  • Senator Dr James Reilly is Fine Gael deputy leader and a former health minister

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