How can policy help improve patient outcomes in stem cell transplantation? An interview with Mark Tami MP

Our editor, Jade Parker, recently spoke with Mark Tami MP, Chair of the All Party Parliamentary Group (APPG) on Stem Cell Transplantation. In this interview you can find out more about the work the APPG does in projects such as the Defend Second Transplants campaign and how Mark and his team are looking to diversify the stem cell donor register to ensure that charities such as Anthony Nolan can provide the best donor match to individuals with blood cancer.

Could you tell us about your involvement in the APPG for Stem Cell Transplantation?

I have been chair of the APPG on Stem Cell Transplantation for a number of years. Until the recent general election, this was as a co-chair with a former colleague, David Burrowes. I became involved in the group after my son received a stem cell transplant many years ago and I have been working to support the needs of stem cell transplant patients through the group ever since. I have been delighted to see how the profile of the register has increased over the years and how attitudes to the importance of signing up have shifted in young people over that time.

The benefit of having an APPG is that it can provide an excellent platform for raising issues of importance on behalf of patients with Ministers and civil servants. With the support of Parliamentary colleagues from across all the political parties, the impact of such a group on patients’ lives can be significant.

In your opinion, what has been the biggest success for the group over the last year?

In 2016, the APPG became aware of a decision by NHS England that removed funding for second stem cell transplants for patients with relapsed disease. For these patients, a second stem cell transplant is often their last chance of survival. As Parliamentarians, the APPG sought, on behalf of patients, to seek clarification from NHS England on the decision. We did this by asking a range of Parliamentary Questions to the Minister responsible, we held meetings on the issue and invited clinicians, patients and NHS England to discuss it with us. Following this activity and a public campaign led by Anthony Nolan, NHS England overturned their decision in February 2016.  This means that up to 20 patients a year can now access the treatment that could save their lives.

You have previously spoken about the need to improve the donor register so that every patient gets the best transplant match. Could you tell us a bit about the current status of the register (how likely a patient will get the best match)?

There are over a million incredible people on the NHS and Anthony Nolan Aligned Registry at the moment but there is always a need for more. Currently, only 60% of transplant recipients receive the best possible match, and this drops dramatically to 20% if you’re from a black, Asian or ethnic minority background. It’s really important to support charities like Anthony Nolan to build and diversify the register to ensure that they can provide the best match to even more individuals with blood cancer.

How do you think we could diversify the registry and increase the number of men donating their stem cells?

There is a shortage of men on the register. This is something which we need to address, in part because men are more likely to be chosen by clinicians as donors. We also need to work together as a community to come up with targeted ways to increase the diversity of the register.  Part of what we can do as Parliamentarians is to raise the profile of the register and raise awareness in our communities of how important it is to have a large pool of young donors available.

What will the APPG for Stem Cell Transplantation be focusing on over the next year?

Over the next year, I would like the APPG to look to be just as ambitious as it has been in the past in its work to ensure that every stem cell transplant patient gets the best possible outcome. We will be looking in particular at the care that patients receive after their transplant, in the long and often complex recovery process. We are also interested in the future of stem cell transplantation and how it might be utilized for a much wider range of diseases as it becomes an increasingly successful treatment.

Do you have any other closing comments about the field of stem cell transplantation?

Stem cell transplantation is a remarkable treatment that can save people’s lives. However, we must ensure that we don’t forget about patients after their transplant and support them in their recovery for as long as it takes.

Profile: Mark Tami MP has been the Member of Parliament for Alyn and Deeside since 2001 and is the Chair of the All Party Parliamentary Group (APPG) on Stem Cell Transplantation.

The APPG on Stem Cell Transplantation is a cross-party group of MPs and Peers that works to inform parliamentarians about the use of stem cell transplantation in saving the lives of people with blood cancers and blood disorders and to promote the expansion of stem cell donation in the UK.

The secretariat to the APPG is provided by the blood cancer charity Anthony Nolan