Stem Cell Transplants

Maria Caulfield Excerpts

Tuesday 24th January 2017 Commons Chamber

[Mark Tami]

I hope that it will not do so tonight, Mr Deputy Speaker.

I declare an interest as co-chair of the all-party group on stem cell transplantation. I am very pleased to see my co-chair, the hon. Member for Enfield, Southgate (Mr Burrowes), in the Chamber; I am sure he will make some comments later. May I also put it on record that my oldest son received a life-saving stem cell transplant a number of years ago?

A stem cell transplant offers a last chance of life to people with a blood cancer or blood disorder. It works because stem cells have an incredible ability to replace damaged blood cells. This remarkable treatment has great potential in our healthcare system. There are different types of stem cell transplant. Some involve people taking back their own cells, while others involve cells from a donor, who can be a relative. Tonight I will talk about stem cell transplants that come from a donor.

About 2,000 people in the UK need such a transplant each year. Two thirds of them will not find a matching donor in their family and will therefore require an unrelated donor. In that regard, I pay tribute to Anthony Nolan trust, which provides patients with matching donors from its stem cell donor register. As well as sourcing transplants, it supports patients and, importantly, their families through the transplant journey and advocates on their behalf. Last year, Anthony Nolan helped to find a match for more than 1,200 people with a blood cancer or blood disorder. I know that the House will join me in thanking the selfless stem cell donors who made that possible, and all those who have joined the stem cell donor register and might donate in the future, of whom there are more than 600,000.

Sadly, one in eight people does not receive the life-saving transplant they need because there is no donor available or a donor cannot be found quickly enough. The odds drop dramatically for patients from a black, Asian or ethnic minority background. Anthony Nolan is working hard not only to build but to diversify its stem cell donor register to ensure that it is able to provide people with the best match. After a lot of work, the situation is much better than it was a number of years ago, but it is still shocking that the chance of finding a donor is so much slimmer for people from a BAME background than for white people. I am sure that the Minister will show her support for efforts in that area.

Despite the fact that stem cell transplants are a well-established treatment, the huge financial pressures on the NHS are causing problems for patients. The situation is most serious for those who need a second stem cell transplant. Sometimes, after having a first transplant, a patient’s blood cancer or blood disorder will come back or relapse. That is devastating news in itself. For about 20 patients a year, the clinician will recommend a second stem cell transplant as their best, and often only, chance of life.

It is worth emphasising that this is not some unknown, experimental treatment that people are simply taking a punt on. We know that one in three patients who receives a second stem cell transplant will reach the milestone of five-year survival, and the results for children are even better, as seven in 10 will reach that milestone. We know that the medical profession recommends the treatment, which is routinely available in other parts of the UK, as well as in countries across Europe and the United States. We also know that the treatment used to be available in England before 2013 and that many people are alive today, leading active lives with their families, because they received a second stem cell transplant.

[Maria Caulfield (Lewes) (Con)]

I thank the hon. Gentleman for raising this important issue. In my time as a nurse, I have looked after patients who have had a stem cell transplant. My haematology colleagues would agree with his statement that between 20% and 40% of patients who have a second stem cell transplant can be cured. The treatment is indeed offered in many parts of Europe and in the US, so it is shameful that it is not offered here.

[Mark Tami]

I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse.

Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money.

One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time. In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor.

Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.

Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”. She says:

“In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

--- Later in debate ---

[Mr Burrowes]

The point I am trying to make is that everyone has been on a journey of discovery and understanding in relation to the development of the life-saving potential of stem cell transplants. This is all part of a partnership involving collection, more effective transportation, research and clinical networks. We all recognise that, in this complex world, there is a risk of relapse, so the journey of treatment is a continuing one. Once someone is having treatment, they are part of that journey, and the hon. Gentleman is right to say that they should not simply be cut off and told that they have had their go.

We know of many other patients with a chronic illness who go back to their doctor or to hospital because they have had a relapse. We have to recognise that that happens in this field, where we are getting better quality outcomes. There is still an issue of resistance, however, which needs extra research and clinical expertise. When a clinician says that a transplant is the only option available to that small number of patients, and when we are investing so much in ensuring that there is greater access nationally to treatments for blood disorders and blood cancers, it makes no sense to cut those people off and give them no further opportunity for treatment.

[Maria Caulfield]

I am listening to my hon. Friend’s powerful argument. I do not know of any other illness in which, if a patient would have a 30% chance of a cure if they had a second transplant but otherwise had no chance, they would be denied that treatment.

[Mr Burrowes]

Indeed, that 30% chance is taken away from those people. The chance of recovery is even greater for children, but that chance is taken away from them as well. We are getting into the issue of the exceptionality of circumstances here, but children are losing out too. These decisions seem to be made regardless of whether someone has a better chance of a cure. Routine commissioning has gone, but we are also finding that the treatment is being refused even in relation to individual funding requests. I will say more about that in a moment. People need not take our word for this—we are not the experts—because 30 clinicians wrote to The Times to make the point that these decisions were effectively passing a death sentence on the individuals involved.

We have heard about the desperate situation facing Sasha, but there are other individuals who will perhaps be able to overcome these obstacles. One who is more fortunate than most is Emily. She was studying when she was first diagnosed with leukaemia at the age of 21. She had a transplant from an unrelated donor in February 2014, but she discovered in December 2015 that she had relapsed, as can often happen. She was told that she would die without a second transplant, so she applied via an individual funding request, which was turned down by NHS England. The situation was the same for Sasha and others. Emily’s consultant felt strongly that she had a good chance of survival and, despite the financial risk, the hospital paid for the transplant itself. She had her second transplant in March 2016. She was very fortunate.

Sadly, because of the decisions that have been made since December, the edict now is that routine commissioning has gone. No risks will be taken by any hospital. Even though crowdfunding initiatives are trying to raise the money for Sasha and others, they will not be in such a fortunate position as Emily, who says:

“I am so grateful I have doctors who will fight my corner and who refused to give up on me. But it shouldn’t be the case that they have to find loopholes and face an uphill struggle to push this lifesaving treatment through. How many others wouldn’t be so lucky?”

Frankly, after the decision in December, hardly anyone will be so lucky now.

I appreciated and recognise that NHS England has difficult choices and decisions to make in prioritising specialist services, and they have to be based on evidence. We are pleading with NHS England to look at the evidence in this particular case. Treatment must be prioritised in cases where the alternative presents significantly lower survival rates.

As the hon. Member for Strangford (Jim Shannon) said, it is an issue of cost. We need to look at the value and cost-effectiveness of such treatment. Second stem cell transplants are well established and are potentially curative treatments, as evidenced by the survival rates. The treatment is recommended by leading clinicians. The alternatives have to be carefully considered but, without such treatments, the mortality rates and the costs can be considerable.

After the original decision was made in July 2016, patients were effectively dependent on making individual funding requests. We have to ask whether that is the way out, whether it is the safety net. Frankly, it is not. Although it says on the tin that people can make the case for there being exceptional circumstances, and we might think it sounds pretty exceptional if, say, someone is facing death and there is no alternative—whether they are a child or an adult—such requests are highly bureaucratic and highly stressful. Sadly, the APPG has seen evidence that people are being pretty much routinely refused.

We are talking about small numbers of people. There is a lack of transparency, and the responses to IFRs do not give full reasons for refusing exceptionality. They appear to be refusals based on policy, rather than discretion based on the available evidence. I implore the Minister to look at the need for transparency on such decisions, which sadly at the moment only add to the anguish and distress of these very vulnerable patients.

For patients with a blood disorder, the fear of relapse is real—relapse is a real and present danger. The decision not to fund second transplants means that, from their first transplant, patients now fear they may relapse and not be able to access a second transplant, which is part of their treatment cycle. The situation is desperate: a death sentence is essentially hanging over them when they should be able to look to a more positive future. We need to be there alongside those patients in the long term, to the end, whatever happens, to ensure that they have the best alternatives.

The impact assessments need to look at the situation properly, and the offsetting of costs must include not only the specific treatment cycle but the overall treatment costs and the cost of not funding this treatment, including the cost of palliative care. In recognising the NHS’s degree of independence, I hope the Minister will use her good offices to ensure that it recognises that all steps need to be taken in conducting a full cost-benefit analysis of second transplants so that, when we revisit the decision in the spring, we will not be back in this situation; otherwise, we will be back here again to make the case and to say that it is not acceptable. A full understanding of the benefits of second transplantation is essential, so that those 16 to 20 patients a year can receive what all clinicians say they need. Their lives should not be lost.