Cystic Fibrosis: Prescription Charge Exemption

Ruth Jones Excerpts

Wednesday 2nd February 2022 Westminster Hall

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

I beg to move,

That this House has considered prescription charge exemption and cystic fibrosis.

It is a pleasure to serve under your chairmanship, Mr Sharma, and to open this debate on a matter that I know is of very great interest to a significant number of people in the country. I am very grateful to all those who have emailed me over the past few days since the debate was announced, not least those who contributed via the Chamber engagement programme that the House of Commons runs. Their comments and insights have certainly deepened my understanding, and I hope that their contributions will enrich the debate in particular. I am also grateful to the Cystic Fibrosis Trust for its members’ contributions, and for the support and briefings that it has given me.

I am sure that hon. Members here today are more than aware of cystic fibrosis. It is one of the few serious, life-threatening, chronic conditions for which people are still required to pay prescription charges. The Cystic Fibrosis Trust estimates that there are around 2,500 people in England who did not qualify for free prescriptions and are faced with a lifelong financial burden. Indeed, the Cystic Fibrosis Trust calculates that there are now more adults than children with cystic fibrosis.

This issue has concerned me not just over the past few weeks but for 25 years, since I was first diagnosed with epilepsy. The consultant told me, somewhat bizarrely, that one upside of the diagnosis was that at least I would now get free prescriptions. I said, “What?” That was news to me; I was not even aware such a thing existed. I had not required medication for my cerebral palsy, and had been a relatively healthy teenager. It had never occurred to me.

At the same time as I had the good fortune to be diagnosed with epilepsy, I had an even weightier burden to carry: I was the health policy officer for the Conservative party, as we languished in opposition. It was a slightly odd time, I have to say—perhaps that gives hope to those opposite that all things change in time. I not only had to deal with the somewhat bizarre queries of Ann Widdecombe at 6 am when I rang her up, but got to see all the briefings and lobbying that came across my desk. One of the early ones was from the Cystic Fibrosis Trust, telling me about the particular predicament that its members were in: not being entitled to free prescriptions. I thought to myself, “How perverse! They have a lifelong, life-limiting, chronic condition for which they cannot get prescriptions, yet, for my epilepsy, which is chronic and can have devastating consequences, I do get free prescriptions.”

It is not just a case, like mine, of taking some five tablets over the course of the day to manage epilepsy. As Gayle told me,

“My daughter takes more than 50 tablets a day to treat the condition. When you compare this to other serious lifelong conditions that are exempt from prescription charges it is impossible to understand why CF is not included and this outdated decision needs to be rectified”.

The lack of an exemption leads to some perverse situations. As Sarah told me,

“Thankfully I developed diabetes, which is a horrible thing to be grateful for. As a result of getting another health condition which comes with more challenges for my health, it meant I was exempt from paying all prescription charges”.

Go back to that first word that she used: “Thankfully”. What a bizarre thing to have to say with regard to diabetes.

At this point, I should pay tribute to someone who is not here today: Bob Russell, the former Member for Colchester, whom older Members here will know well. He campaigned non-stop on this issue. It is worth cycling back to what he said in 2013, the last time that we debated this issue in the House. He said:

“Those with long-term conditions do not choose to be ill. They face a daily routine of various types of medication and physiotherapy to maintain any quality of life.”—[Official Report, 10 July 2013; Vol. 566, c. 511.]

Those words are as true today as they were back in 2013—and back in 2003, 1993, 1983 and all the other many times that this issue has been discussed.

When I first researched this issue 25 years ago, I was even more surprised by the fact that the exemption list was based on a list of conditions that had not been reviewed since as far back as 1968—before man had made it to the moon—with the exception of the addition of cancer in 2008. My contention to the Minister today is a simple one. It is the one I urged my right hon. Friend the Member for North Somerset (Dr Fox), when he was shadow Health Secretary, to pose to the then Health Secretary Alan Milburn in 1999. Why has the list not been reviewed since 1968? People live with cystic fibrosis well into adulthood these days, which was not the case in 1968. Why can we not review matters and take modern medicine into account? In particular, why is it fair for me to get free prescriptions when they cannot?

As Anna told me:

“The exemption list was introduced in 1968 when children born CF were not expected to live to their teens. Now more than ever, with the life-changing personalised medicines that are available to the majority of CF patients, life expectancy will be massively increased. Therefore, CF should be reconsidered for exemption as most patients will now be living relatively normal lives.”

[Ruth Jones (Newport West) (Lab)]

I thank the hon. Member for giving way; he is making a powerful speech. As a former physiotherapist who used to treat children and young people with cystic fibrosis, I know exactly the point he is making. Living in to adulthood is fantastic and brilliant, but people are being penalised. Is it not right that those people should not have to worry about having to take medication? It should be a right.

[Paul Maynard]

The hon. Lady is exactly right, and I will demonstrate why with a few examples from people with CF. For those living with CF, medication, physio and general health all have to be considered when planning the simplest activity. Being unwell frequently interferes with work and education. As Sam says:

“Due to the nature of the illness I have been unable to work full time after previously trying. Prescriptions is another cost I have to pay despite barely getting any financial support from the government. To me it shows a lack of understanding the fact the medication ultimately contributes to us staying alive and gives us the best chance of trying to contribute to society.”

We could easily be having a debate about other long-term conditions, such as asthma, which are not included either. I could point to transplant patients, a category that would not have existed in 1968 but who rely on drugs to sustain their lives. If any Scottish National party or Plaid Cymru Members were present, they might have cited the example of prescription charge regimes in Wales and Scotland. Opposition Members might bring up the claims and calls of the wider Prescription Charges Coalition. I will leave it to them to make those points; those views are not necessarily shared by Government Members.

I want to focus, laser-like, on this single issue. We have seen in today’s newspapers the success that such an approach can have. The long campaign on hormone replacement therapy by the hon. Member for Swansea East (Carolyn Harris) finally got some good news. It is clear that we need to undertake a thoroughgoing review, setting out what conditions have been brought into scope since the Medicines Act 1968, through advances in medical science. Those might be conditions that did not, or could not, have existed in 1968, or conditions where life has now been further prolonged.

I am sure I can predict some elements in the Minister’s reply, because they were made by former Labour Ministers and in 2013. I am sure we will hear of the wonders of prescription prepayment certificates at just £2 a week—what could be better value? That is less than the price of a cup of coffee at Costa. But many living with a long-term medical condition such as CF can be economically disadvantaged by their condition, by prescription charges and by paying for the annual prepayment certificate, which costs £108. That adds to their financial burden.

According to the Cystic Fibrosis Trust, about one in 10 people with CF—just under 1,000 in the case of that survey—received emergency grants of about £150 from the trust in 2020-21. More than half of those grants were awarded for daily living costs, such as food. As Tracy told me:

“A few years ago I had to take redundancy due to ill health…I had previously paid for a prepaid prescription certificate but could not afford to renew it when it ran out. After 3 months without medication, I was in a poor state of health, constantly coughing, very weak, unable to lie down or even sleep sat up due to the accumulation of mucus in my lungs. After 4 nights without sleep I saw my GP who gave me a prescription for a strong course of antibiotics and steroid tablets. We had to miss a payment on a household bill so that I could pay for my prescription. The first course of antibiotics didn’t clear the infection, so I needed a further one. I had to borrow money from a family member to pay for it…Eventually, I was able to claim PIP which allowed me to pay for my own prescriptions again. I consider myself lucky to have someone who was able to help me out when they saw how ill I was.”

There is also a serious risk that those who incur prescription charges for their CF may not take their essential medicines, particularly if they are experiencing financial hardship, or in higher education on a limited income. Over a third of those who replied to the Cystic Fibrosis Trust survey said that they had not taken medication because of the cost of prescriptions. As Anna told me:

“During university I didn’t take my medication simply because I couldn’t afford the fees. The blunt fact here is that people with CF take anywhere from 10-30 different medications a month. People with CF have been charged an insane amount of money when there is a system in place meant to protect people with long-term health conditions from being financially penalised—however they are being kept from the exemption list.”

The cost to the Government of righting what I believe to be a moral wrong is £270,000. As a former Minister, I know that that sort of money can often be found with a good rootle down the back of the ministerial sofa—a bit of jingling of the coins. However, there must be darker, deeper and slightly odder reasons why successive Governments—of all colours, and I look across the Chamber as I say that—have refused to review the 1968 list, despite all the pressure and reasonable arguments to do so. I cannot begin to imagine why Ministers are saying no.

If anyone wonders what this change might mean for CF patients, they should listen to Mario:

“My partner would then feel supported by the government rather than left on her own. The relationship to her medicine would change from financial to purely medical. Support, hope and fairness is the minimum we ought to give to people with life-threatening long-term conditions such as cystic fibrosis.”

Or listen to Donna:

“CF patients have enough problems to face, we should do anything we can to help. CF drugs may be expensive, but lung transplants cost even more.”

I will leave the final words to Sharon, another survey contributor:

“I would have more money available to pay for life’s other essentials. It would be pleasing to see the end of an injustice as I have no choice but to take this life lengthening medication and shouldn’t be required to pay for it when if I had been born with another condition, I wouldn’t have to.”

I hope that the Minister listens to those pleas and reasonable questions, and sets out the Government’s agenda to right what I believe to be a wrong.

[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?