Cystic Fibrosis: Prescription Charge Exemption

Kerry McCarthy Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is always a great pleasure to see you in the Chair, Mr Sharma, and I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing this debate.

As some Members might know, I have a personal interest in this issue, as my niece Maisie has cystic fibrosis. She was diagnosed when she was just a few weeks old. Actually, it was during that little period after Christmas: it was her mother’s birthday on 28 December and her dad’s birthday on the 30th, and she was taken to hospital because her progress had started to go backwards. One of the welcome developments since she was born is that there is now a heel prick test, so that newborn babies are screened for CF, which prevents people from having to go through a similar situation.

Maisie is one of those who is benefiting from access to the new drugs that have been developed recently, and at 17 she is doing really well. The same is true of one of my constituents, who is just a little older. His dad tells me that it is as if he had never had cystic fibrosis. That is great news and I congratulate all those who have been involved in developing these drugs—Kalydeco, Orkambi and its version for children, Symkevi, and Trikafta—and in making them freely available on the NHS. The former Health Secretary, the right hon. Member for West Suffolk (Matt Hancock), was obviously instrumental in that process and I thank him for it. Of course, I also thank the Cystic Fibrosis Trust for spearheading that campaign.

I also want us to remember those for whom these medical advances came too late. My constituent Lee Partridge tragically lost both his daughters to CF: Richelle at the age of 26 in 2015, and Lauren at the age of 19 just a few months later in January 2016. Perhaps if they had been born a decade later, the new drugs would have saved their lives. These medical developments happen so quickly. No sooner had the campaign paid off and Orkambi been approved than Trikafta was suddenly around the corner. I must admit that my sister, Maisie’s mother, did not even realise that there was another campaign to mount because it came so quickly afterwards.

I hope this means that cystic fibrosis will eventually become a condition that people live with to a normal age, rather than being something that they die from. We are here today because while it used to be the case that sufferers rarely survived into adulthood, life expectancy has increased almost fourfold since then and, as we have heard, there are now more adults than children with cystic fibrosis. If that had been the case back in 1968, when the list of exemptions from prescription charges was drawn up, there is no doubt that cystic fibrosis would have been on that list. It seems quite anomalous. We ought to treat conditions like for like, based on need. We cannot live in the past with this fixed state from 1968, which has become pretty meaningless.

Today I have received an answer to a written question requesting the figures for how many adults have to pay for cystic fibrosis prescriptions. I was told that those figures are not collected. We know that about 89% of all prescriptions are dispensed free of charge, but we do not know specifically what that means for adult patients with cystic fibrosis. The Cystic Fibrosis Trust estimates their number to be around 2,500 people in England.

Although the three drugs I have mentioned that target CF at its root cause are free to patients, which is obviously good, many patients often need to pay for additional medication to prevent lung and sinus infections, therapies to aid digestion, antibiotics and so on. Those who live in poorer areas are statistically more likely to contract severe lung infections, meaning that they are more likely to have to pick up the bill for antibiotic prescriptions. Having a lifelong condition incurs all sorts of hidden charges, including the cost of traveling to medical appointments or buying specific foods to cater to dietary needs. We are lucky in Bristol to have both an adult and a child cystic fibrosis unit, but someone living in Milton Keynes, as my niece does, has to travel to Oxford for their treatment. As the cost of living crisis escalates over the coming months, disabled people will face increasing energy bills and food costs, and many will experience the burden of stressful work capability assessments—we know that the Government are bringing in tougher sanctions on jobseekers. Shouldering the cost of a prescription-exempt chronic condition can mean a choice for some people between paying the bills and affording essential meds.

I was recently contacted by Martin, a constituent whose 19-year-old son James has cystic fibrosis. James works part time. Last year, his claim for disability allowance stopped when he reached adulthood, and his personal independence payment application was refused. Martin currently pays for James’s prepaid prescription certificate, but he worries that a change in his own financial situation would mean that he would not be able to foot the bill for his son’s prescription. What is ironic is that Martin himself has insulin-dependent diabetes, which entitles him to free NHS prescriptions. He cannot even begin to understand how he is deemed eligible while his son is not, meaning he does not pay for his own prescriptions but does pay for his son’s.

Martin is not alone in his opinion—96% of people who responded to a Cystic Fibrosis Trust survey described the prescription charges as unfair. It certainly gives rise to the question why CF patients should be treated differently from others with other lifelong conditions that exempt them. I asked the Health Secretary last year whether the Government plan to review the list of conditions exempt from prescription charges. A junior Minister responded to confirm that the Government did not plan to do so.

The former Liberal Democrat Member Bob Russell has been mentioned. I always use Bob Russell as an example of why early-day motions are perhaps not all they are cracked up to be. For years on years—it might have been two decades—Bob queued to be No. 1 on the early-day motion list so he could call for an exemption from prescription charges for cystic fibrosis patients. He always got lots of signatures, because his early-day motion was No.1 and first in the booklet, but we are still here debating the issue. When I am trying to explain to my constituents why my signing an early-day motion will not change the world, Bob is the example I use. It would be lovely if we could move on from having these debates and making the same points over and over again. There is no logical reason for it, other than the point that if the Government reopen the 1968 list they will have to review other conditions as well, because people are living longer due to medical advances. I do not think that is a very moral reason for not doing it.

We get told that patients who are not exempt from prescription charges can apply for a prepaid prescription certificate that costs £2 per week. However, that is £104 per year; everything adds up, and I have already mentioned increasing fuel bills and food prices. That is £104 per year that they should not be paying. Grants are available through charities such as the Cystic Fibrosis Trust to support those in urgent need, but they are in high demand. Between 2020 and 2021, one in 10 people with cystic fibrosis received an emergency grant from the trust; the majority of those grants went towards basic living costs.

There is a serious risk that cystic fibrosis patients who incur prescription charges may avoid taking essential medicines, especially if they are already in financial hardship. People living with chronic conditions in Wales do not have to face the same difficult choice between medication and heating their homes, as all NHS prescriptions are free there.

[Ruth Jones]

My hon. Friend is making a powerful speech. Would she agree with me that, for all of us living in Wales, the fact that all of our prescriptions are free means that people do not have to worry about not having the money to take life-saving medication?

--- Later in debate ---

[Kerry McCarthy]

That is certainly true. I know that some people would say that this would mean that Government money would be used to subsidise the 11% of people who pay for their prescriptions at the moment. However, the figures that we have talked about and the unfairness of the current situation seem totally wrong.

Although I hope that cystic fibrosis becomes a condition people can live with, that drugs can manage the condition and that people do not suffer from too much, I would still not want to be in the situation of having it. It is still a condition where people have to have daily physiotherapy, take drugs such as Creon before eating any food, and make regular trips to the hospital. They have to be very careful to avoid infection and had to shield during covid. When people are paying that sort of price, giving them an exemption from prescription charges is not too much to ask. I hope that the Minister will finally commit to reopening the 1968 list, and make sure that cystic fibrosis patients do not have to pay this amount anymore.

--- Later in debate ---

[Edward Argar]

I am grateful to the hon. Gentleman for his spirited defence of early-day motions, of which he makes powerful use, as he does with every opportunity he has to speak in this place.

My right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) is no longer able to be here, but he made a valuable contribution, and I am grateful to you, Mr Sharma, for allowing him to speak—even if, as a former Minister, he should have known better the consequences of seeking to tempt me to make policy at the Dispatch Box without cross-Government agreement, which might have led to an early termination of my ministerial career. He made a powerful point, as all hon. and right hon. Members have done, and I will turn to some of those points in a moment.

Before I do so, I want to recognise the fantastic work undertaken by the Cystic Fibrosis Trust, which does a fantastic job on behalf of people living with cystic fibrosis and their families, and in bringing the condition and the needs of people with it to the attention of this House, and more widely. I also acknowledge the work of the Prescription Charges Coalition, of which the Cystic Fibrosis Trust is a member. It has worked tirelessly to raise awareness of the help available to patients with the cost of their prescriptions and campaigns on an issue that its members feel strongly about. In our democracy, whether or not we agree on the policy position, it is right that we recognise those who get out there, campaign and seek to drive change and policy. It is important to recognise those who are active in our democracy in that way.

As we have heard, cystic fibrosis is a life-limiting condition affecting many thousands of people in the UK. It is not only a life-limiting disease but, as we heard from my hon. Friend the Member for Ashfield, a disease that can impact on the quality of life and the life experiences of those affected and their families. While there is no cure for cystic fibrosis, there are treatments available on the NHS to help reduce the effect of symptoms and make it easier to live with.

It is not that long ago that conditions such as cystic fibrosis saw life expectancy so low that many were advised not to expect to live beyond their teens. Thanks to advancements in treatments, better care and the work of organisations such as the Cystic Fibrosis Trust, people with cystic fibrosis are now living for longer, with a better quality of life, with half of those with the condition living past the age of 40. Children born with cystic fibrosis today are likely to live longer than that. That is a positive story and a reflection on our medical and scientific advances.

I turn to the crux of the debate. When the medical exemption list was drawn up in 1968 in agreement with the British Medical Association, it was limited to readily identifiable, permanent medical conditions that automatically called for continuous, lifelong and, in most cases, replacement therapy without which the patient would become seriously ill or even die. As the shadow Minister, the hon. Member for Enfield North (Feryal Clark), alluded to, there has been a review since 1968—only one—which resulted in the addition of cancer in 2009.

When the exemption list was drawn up, decisions on which conditions to include were based on medical knowledge at the time—for instance, children with cystic fibrosis were not expected to live to see adulthood—and it is entirely understandable that, given advances in treatment and increases in life expectancy, those who are now living with cystic fibrosis for a lot longer should wish to pursue exemption from prescription charges to help them maintain their quality of life with the drugs that are essential to their quality of life. The issue of prescription charges was reviewed more broadly in the round in the 2010 Gilmore report, which did not recommend further changes at that stage.

As the hon. Member for Enfield North alluded to, I know that the answers that Ministers have given, stating that the Government have no immediate plans to review the list, will have caused disappointment to right hon. and hon. Members and to those with this condition. We do think it would not be right in this context to look at one condition in isolation, separate from other conditions, because others would rightly argue that their condition was potentially equally deserving of an exemption if it fitted the same criteria. My hon. Friend the Member for Blackpool North and Cleveleys has rightly advanced the case of cystic fibrosis, and I entirely understand why, but I know that he will also recognise that other conditions might qualify for consideration in the same way, or for the same case to be made for them by right hon. and hon. Members.

When the exemption list was first put in place in 1968, 42% of items on prescription were free; now 89% are free. There has been considerable change in that space, but to go to the heart of what right hon. and hon. Members have asked for today, were my right hon. Friend the Member for South Holland and The Deepings in his place, I would disappoint him by saying that, as he will appreciate, I cannot make policy standing at the Dispatch Box. It is important that everything is considered carefully. Although this is not my policy, I will continue to reflect on the points that have been made by right hon. and hon. Members today and by campaigners on this issue. I will also ensure that I will not only speak to my noble Friend, the Minister with portfolio responsibility for this issue, but draw to his attention the transcript of today’s debate.

[Kerry McCarthy]

I have just realised that it is groundhog day—I missed an ideal opportunity to weave that fact into my speech, as I think all of us would have done. Is there anything the Minister could say that does not makes us feel like we have been here many times before? He has said that he will reflect on these points, but is there not something a little bit more concrete that he can give us a commitment on, so that we feel that we are perhaps making some progress?

[Edward Argar]

I am grateful to the hon. Lady. She may or may not always agree with me, but I will always endeavour to be straight with the House, even when the message may not always be the one that Members want to hear. I cannot stand here now and say that there will be a review of that list; it is important for me to be honest with her. What I can say—which she may feel is insufficient, and I entirely respect her if she does—is that I will reflect on the points made today and the issues raised. I will discuss this issue with my noble Friend and ensure that the points that have been made in this debate are conveyed to him, but it would be wrong of me to commit to something that I am not in a position to commit to. The hon. Lady rightly presses her case, but I know that she will appreciate my position, and it is important that I am honest with the House in that respect.

I touched on the help with prescription costs previously, and the number of items. While I know that this is not at the heart of the point made by my hon. Friend the Member for Blackpool North and Cleveleys, it is still important that I put on record the point that I alluded to: when medical exemptions were introduced, only 42% of all NHS prescription items were dispensed free of charge. That figure is now around 89%, and around 60% of the English population do not pay prescription charges at all. Many people with medical conditions not on the exempt list already get free prescriptions on other grounds, as my hon. Friend the Member for Blackpool North and Cleveleys said, with current exemptions providing valuable help for those on the lowest incomes.