Cystic Fibrosis Drugs: Orkambi

Debate between Sharon Hodgson and Kerry McCarthy

Monday 10th June 2019 Westminster Hall

[Mrs Hodgson]

I agree with my hon. Friend. I hope that the Minister will have some ideas about how this drug company can be held to account and not be allowed to continue in this way. I hope the Minister agrees that the situation should never have been allowed to get to this stage.

Lucaftor has the same active ingredients as Orkambi, and the Argentinian pharmaceutical company Gador is offering a price of £23,000 per patient per year, which drops to £18,000 if patients and their families can get together a group of more than 500 patients to purchase Lucaftor as a collective. That is significantly lower than the £104,000 Vertex wants for Orkambi. I say “want” deliberately—it is not the cost, but what Vertex wants. Of course, for many patients in the UK, Lucaftor will still be way too expensive to access, so it is not a feasible alternative at all. That is why NHS England and Vertex need to come to a conclusion that puts cystic fibrosis patients first, and ensures that they have access to the life-saving drugs they need and deserve.

[Kerry McCarthy]

I thank my hon. Friend for all her support on this issue. I agree that the issue with the Argentinian solution is that in a buyers’ club where people have to pay privately, the drugs will still be out of reach for many people. However, the fact that Gador is offering this drug for so much less than Vertex is charging for a similar product means that the NHS could, if it decided to trial the drug, buy it for 4,000 patients who would benefit from Orkambi. Therefore, no one would have to pay for it privately. The NHS could fund it, but at much less than Vertex is asking for. I ask the Minister: why is that not the solution?

[Mrs Hodgson]

I was going to come on to that, but if a point is worth making once, it is worth making twice. I will make it to the Minister as well, so she will have plenty of time to think about it.

As we all agree, patients and their families should not be put in the position—as some are—of having to pay thousands of pounds for their treatment. Family income should not determine who lives and who dies. That is why the NHS was founded—so that all could have access to the same excellent treatment, regardless of means. That was true 70 years ago when the NHS was formed, and it is still true today.

As the hon. Member for Sutton and Cheam pointed out, our NHS is there for us all and should not be held to ransom by a pharmaceutical company, but neither should access be denied because of unfit processes and systems in the NHS. Over the years, as a shadow public health Minister, I have met many patient groups, including those with cystic fibrosis, who are missing out on life-changing medicines because their condition is not rare enough and is therefore not deemed by NICE to be cost-effective. We need an appraisal process that is fit for purpose and that will capture rare diseases such as cystic fibrosis effectively.

Without drugs such as Orkambi, patients and their families are being harmed physically and psychologically. Every day without the drugs that patients need makes their condition worse and threatens their lives. What steps will the Minister take to ensure that patients with rare diseases have access to the medicines that they need and deserve? It is about access not just to Orkambi, but to other precision medications such as Symkevi and the next generation of cystic fibrosis drugs that could help patients who are suffering.

Vertex recently announced the headline results for its fourth cystic fibrosis medicine, a triple combination therapy that could radically transform the lives of nine in 10 people who live with cystic fibrosis in the UK, delivering unprecedented improvements in acute lung health. That is amazing news, but patients fear that they will never be able to access this ground-breaking drug. I urge Vertex to put patients first and consider the real-life impact of this cost dispute on patients and their families.

Vertex and NHS England must come to an agreement urgently, because patients have already waited far too long. If an arrangement cannot be made soon, will the Minister personally step in and pursue the alternatives that my hon. Friend the Member for Bristol East mentioned, such as a Crown use licence or a clinical trial? Cystic fibrosis patients need urgent access now to the drug that they have been denied for three years. It is time the Government considered all alternatives.

No-deal EU Exit: Public Sector Catering

Debate between Sharon Hodgson and Kerry McCarthy

Tuesday 5th March 2019 Westminster Hall

[Mrs Hodgson]

That is the worry. As Bidfood worked out, the cost will have to go up by 69p a child just to stand still. In areas that are trying to keep the price as low as possible, that initiative disappears, but in other areas that are already paying £2.30 or £2.40, what will happen? Parents cannot afford to pay much more than that, so the quality of the food, children’s health and the health of the 10.5 million people who rely on this food every day will suffer as a consequence.

If the Government do not cover the shortfall, menus may have to be reduced so that providers do not overspend. As my hon. Friend has just said, that will compromise the nutritional value of the meals given to service users. An increase in the costs of public sector meals could therefore see an increase in poverty, childhood obesity and malnutrition in hospitals and care homes, which could have serious implications for the health and wellbeing of service users.

The affordability of food post Brexit, especially in the event of no deal, is an incredibly alarming issue. That is the case for all our constituents, but even more so for those who rely on public sector catering for their food. General food shortages due to panic buying or an impact on deliveries due to fuel shortages are of particular concern, especially for public sector catering in hospitals and care homes. The Government should communicate openly and factually about the food challenges ahead and encourage the food industry, caterers, institutions and organisations to do so too.

One person wrote to me to say that the Government had given them

“no real guidance, other than to stockpile food”.

One local authority caterer told Food for Life that it had invested more than £1 million in stockpiling ingredients, including 250 tonnes of meat. However, the caterer is concerned, as that food will only last for a short period. Not every caterer has the capacity to stockpile food. What advice have the Government given to suppliers and caterers? Is advice being updated clearly and regularly?

The Federation of Wholesale Distributors has expressed concern about the continuity of food supplies to schools and hospitals in the event of a no-deal Brexit. It has suggested that food supplies should be triaged and prioritised for those most in need, but that could happen only with Government intervention. Is that something the Minister has considered? Concerns have also been raised with me about products being diverted to more lucrative customers, rather than being prioritised for vulnerable people. Will the Minister address that point too?

The Civil Contingencies Act 2004 does not deal directly with food—probably nobody ever thought that we would be in this position—and nor does it identify responsible agencies with a food remit. Has the Minister had any conversations with his Government colleagues about including food in the 2004 Act, particularly for vulnerable people?

The meals distributed in schools, universities, hospitals, care homes and prisons each day are crucial to those who eat them. Caterers are already beginning to remove higher quality produce from menus, with some school caterers considering a move from hot food to cold meals. That could result in a reduction in the nutritional value of meals, which would be detrimental to children or to service users in the case of the other provisions.

[Kerry McCarthy (Bristol East) (Lab)]

My hon. Friend does amazing work on schools through the all-party parliamentary group, and through the children’s future food inquiry, which I am pleased to be involved in. She will know that there is real concern about children living in food poverty. Indeed, the Food Foundation assessed towards the end of last year that around 3.7 million children are living in households that would have to spend 42% of their annual income to meet the guidance of the “eatwell plate”. That is simply unaffordable and if food prices rocket because of Brexit, it will become even more so. Does she share my concern that we are reaching crisis point?

--- Later in debate ---

[Mrs Hodgson]

That is another very good point. Often, those who supply local authority caterers are some of the best for supplying food banks and FareShare. When they have to trim and trim again, that will be one of the charitable aspects of their operations that will sadly have to go. Again, that will have a knock-on effect on the poorest and most vulnerable in our society.

[Kerry McCarthy]

My hon. Friend is being very generous. I am involved in something called Feeding Bristol, which is an offshoot of Feeding Britain—an organisation that aims to eradicate food poverty. We were discussing this matter at a meeting last week. Food prices going up will create an affordability issue, and if people stockpile and panic-buy food and the supermarkets run dry, donated food to hostels and food banks will dry up completely. Not only will people be more likely to have to go to food banks because they will be unable to afford food—and they might not be getting such good quality food through public sector catering—but food banks will run out as well.

[Mrs Hodgson]

I hope that the Minister acknowledges the picture being painted of the potential knock-on effects. I appreciate that this is the worst-case scenario—a no-deal, catastrophe scenario—but, given that there is no deal on the table that the majority of the House can vote for, a responsible Parliament has to prepare for it. These doomsday scenarios could become the reality for many people’s lives, despite none of us in this room wanting that to happen.

Does the Minister share my concern about a reduction in the safety and nutritional quality of food served to those using public sector catering, especially given that those meals are, as we have heard, the main source of nutrition for millions of people—10.5 million people, day in and day out, up and down the country? Equally, public sector caterers must provide food that meets specific health or cultural needs, such as kosher, gluten-free, vegetarian or allergy-specific food. There are many other examples. For some, it could be a matter of life or death. For others, a failure to provide nutritionally complete meals would slow down their recovery and increase the risk of malnutrition, or result in a deficiency in other nutritional values.

I received a message from the National Association of Care Catering that reads:

“We have 60 plus residents in our home, so have to provide 60 meals three times a day, with the average age of 86, how do we ensure regular supply?”

That is of great concern across the industry. Even where contingencies can be made, it may involve people eating very bland or repetitive menus, which I know goes against the entire ethos of public sector catering.

Finally, the workforce are crucial to public sector catering. Have the Government engaged with the catering sector to understand the challenges that a disorderly Brexit might pose to its workforce and services? The public sector employs a considerable number of EU nationals, and I am told that some are already returning home. The threat of a no-deal Brexit will only make the situation worse, thereby posing a threat to the services that the sector provides, and having an impact on safety.

Although new members of staff can, of course, be recruited, it takes time and money to train them. A workforce gap in the event of a no-deal Brexit would limit the effectiveness of public sector catering, which is already facing all the challenges that I have highlighted. What steps are the Government taking to ensure that the public sector catering workforce are trained, equipped and funded to provide vital services in the event of no deal?

Public sector catering is fundamental to the care provided in schools, universities, hospitals, care homes and prisons. A delay in food deliveries, an increase in the cost of food and a decrease in nutritional standards or safety could be detrimental to service users and, in some cases, a matter of life or death. When we talk about the impact of no deal on our health and wellbeing, we must also consider the availability of food to the most vulnerable in our society, which a number of my hon. Friends have spoken about.

What about those who cannot afford to stockpile or lack the capacity to do so? What about those who are in hospitals, care homes or prisons? They cannot stockpile food in their little bedside cabinet. I do not have time to discuss this issue fully now—thankfully others have mentioned it—but we must remember that a surge in food prices could mean a reduction in donations to food banks from public sector caterers, some of whom are very generous to not only food banks but to holiday provision. I know that Bidfood supports holiday clubs. My hon. Friend the Member for Swansea East (Carolyn Harris) spoke in glowing terms about Bidfood’s support for her holiday clubs at the last APPG meeting. All of that will have implications for families already living in poverty.

Brexit should not be the reason that millions of people go hungry, and I hope that after the debate the Minister will have considered another aspect of a no-deal Brexit that perhaps the Government had not already considered. I hope that he will urgently relay what I have said back to his Government colleagues. In closing, I reiterate that no deal should not mean no meal. I look forward to the Minister’s response.