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'A medicine that would reduce instances of reactivation would be a massive win-win’ – How the new CMV reactivation drug approved in England will make a difference to patients’ lives

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After the news that the National Institute for Health and Care Excellent (NICE) has recommended letermovir (Prevymis) for routine use on the NHS in England, Bradley from our Policy and Public Affairs team explains the decision and Professor Steve Rothberg, patient representative on the NICE committee appraising this drug, shares what this means for patients like him.

NICE’s decision

Regular readers of our blog may remember back in March that the Scottish Medicine Consortium recommended letermovir (Prevymis) for routine use on the NHS in Scotland. We’re now delighted to hear that a recent decision by NICE means that cytomegalovirus (CMV) seropositive transplant recipients in England will also now have access to this medicine. As the Welsh and Northern Irish authorities often follow NICE decisions, we expect this decision to mean letermovir will be available across the four nations soon.

CMV is a very common virus, often caught during childhood, and is usually harmless. For healthy people, their immune system controls CMV and it lives dormant in the body without causing symptoms (much like chicken pox). After a donor stem cell transplant, a patient’s immune system can be weak and unable to keep CMV at bay as it normally does. The virus is then able to replicate, known as reactivation.

Anthony Nolan surveyed stem cell transplant patients and their support networks to understand their experience of having, or caring for someone experiencing, CMV reactivation and the associated medical treatments. Anthony Nolan then represented these views on the NICE Technology Appraisal committee (who make the decision on which drugs are recommended) alongside our Consultant Haematologist, Dr Robert Danby.

Our patient representative

Professor Steve Rothberg experienced CMV reactivation after his stem cell transplant and was nominated by Anthony Nolan as the patient representative during the NICE appraisal process for letermovir.

He shared his experience as part of our submission to NICE and how it affected him emotionally and physically, as well as reflected on what this new drug could mean for patients who could experience CMV reactivation in the future:

‘My CMV reactivated 25 days after my transplant and I had a course of valganciclovir tablets that I took at home (treatment for CMV reactivation). Ten days later, my CMV level was back under control, but five days after that the levels were really high again, even higher than during the initial reactivation. This meant a one-week course of IV ganciclovir (an intravenous form of valganciclovir), which also meant readmission to hospital.

‘Because my CMV reactivated so soon after transplant, my immunity was still extremely compromised. The need to return to hospital, without the special isolation arrangement in the transplant unit, was therefore a very stressful turn of events for me.

 ‘The reality was even worse than I feared. The familiar pressure on beds meant that there was no haematology bed for me and I was an ‘outlier’ on a ward that was not specialist in my condition. Staff are so busy and the consequence for me was a chaotic readmission with delayed medicines and shared toilet facilities. Any transplant patient knows  just how frightening this is when your immunity is so low.

 ‘In the end, the IVs worked and my CMV levels dropped. Though the harm to my mental wellbeing (and that of my carer) was significant, I know I was luckier than many others whose CMV doesn’t respond as quickly. I was even more relieved not to contract the infection that could have severely complicated my recovery or even cost me my life.

‘A medicine that would reduce instances of reactivation would be a massive win-win for hospital staff run off their feet and patients as vulnerable as I was, and free up scarce hospital beds at the same time.

‘I’m so happy to hear that patients  in England will now have this option, with Wales and Northern Ireland hopefully following suit. To reduce not only the physical but also mental burden of reactivation will be incredibly beneficial to other patients going through what I did.’

If you or someone you know has experienced CMV reactivation and would find speaking to our Lead Nurse helpful, please don’t hesitate to contact Hayley Leonard in Patient Services on 0303 303 0303.