David Burrowes calls on NHS England to reverse its decision to not routinely fund second stem cell transplants for patients with blood cancer or blood disorders who relapse after their first transplant.
It is a pleasure to take part in this debate and continue a double act of many years with the hon. Member for Alyn and Deeside (Mark Tami), as well as other hon. Members on both sides of the House who share a deep concern about the great life-saving value that we have spoken about for a number of years in relation to stem cells and stem cell transplantation.
Ten years ago, I had little or no knowledge about the life-saving treatment available through stem cell transplantation. Now, after a private Member’s Bill and years of co-chairing the all-party group and particularly, and more significantly, meeting individuals and families affected by blood cancers and disorders and learning that stem cell transplantation saves lives, I know that it is important that we make the case, particularly in relation to those facing the awful prospect of not receiving a second transplant that could save their life.
We are saying this, but the Government know this. The Government know the great value of stem cell transplantation, not least because they have put their money where all of our mouths have been over a number of years. First, that has happened with the source of this transplantation, in relation to cord blood and stem cells. Since 2010 some £20 million of taxpayers’ money has rightly been invested in improving the provision of stem cells, including umbilical cord blood.
The last debate we had on this issue was held on 15 September 2015, when my hon. Friend the Member for Mid Norfolk (George Freeman), then the Under-Secretary of State for Life Sciences, responded. The debate was about the national stem cell transplantation trials network and many of the Members present today were involved. These were my hon. Friend’s words in that debate:
“stem cell transplantation is a life-saving treatment that plays a key role in the treatment of leukaemia and some other diseases.”—[Official Report, 15 September 2015; Vol. 599, c. 1022.]
That is the basis of our plea to the Minister and NHS England today, as a result of what we have all come to know over the years from real-life examples—some family members are here today. We recognise, and have been very pleased, that the Government have responded to our urging and have been investing in cord blood collections, and have wanted to ensure they join with us in terms of the ambition for a national stem cell transplantation trials network.
The Minister back in September 2015 also talked about the great partnership work that we have recognised today involving the Anthony Nolan charity and NHS Blood and Transplant, and how the Government had worked very hard in supporting and directly funding a unified registry, and how the trials acceleration programme had provided additional quality research that helped provide the outcomes we are talking about today for transplantation and saving lives.
There has been good progress. There were four new blood and transplant units back in 2015 and, as the hon. Member for Alyn and Deeside has said, there has been a recognition of the shortage particularly in relation to black, Asian and minority ethnic groups—and it was noted in 2015 that, because of the targeted recruitment, there had been an improvement in their life chances, with the rate going up from 40% to 60%. The residue now from the cord blood bank—there were some 12,000 or so samples back in 2015, and that has no doubt increased —has enabled there to be much greater opportunities for providing quicker and easier transplantation. And that is what it is all about. That context is important to the focus of this debate, which is about the prospects for those needing a second transplant. We are talking about the small number of people who relapse, some 16 to 20 a year—
We are talking about the 16 to 20 people a year for whom the clinical recommendation is that they have a second transplant. NHS England made a decision on this in December 2016. We have talked about percentages for black and minority ethnic groups, and the case has rightly been made that it is a scandal that people from other backgrounds are more able to get a match. It is also a scandal that, for the people who have been told of the awful decision that they will not get a second transplant, it is not a question of their having a 60% or 40% chance, because they will have no chance at all.
I am sure that, like me, the hon. Gentleman finds it hard to think of any other recurring illness for which people who had relapsed would be told, “I’m sorry, you’ve had your one chance. That’s it.”
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.
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.
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.
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