Healthcare professionals and patients in a clinical setting

Campaigning for more equitable access to care and support

Not everyone has the same access to expert treatment, care and support they need throughout their transplant journey – we are working to reduce these existing inequities.

We want everyone to have access to the best care possible. 

We know that not every cell therapy patient can access the care or support they need, when they need it.

Our research has identified inequalities in the outcomes of stem cell transplant for patients from a minority ethnic background, highlighted the financial difficulties faced by patients from lower incomes and uncovered variation in access to supportive services such as psychological care.

We use our voice and our influence to advocate for equitable, compassionate and personalised care for every cell therapy patient, regardless of their ethnicity or other factors that should not affect their care.

We are campaigning for:

  • Better access to psychological support for patients and their families, regardless of where they are treated or their indication for transplant, CAR-T or gene therapy.
  • Improved support for patients and families experiencing financial difficulties due to the costs of accessing treatment.
  • Better access to fertility services for patients, particularly those with non-malignant conditions undergoing a stem cell transplant or receiving gene therapy.
  • An end to unwarranted variation in the care and supportive services available to patients and families across the country.

We’re also working to:

  • Ethically support the development of donor registers abroad, particularly in areas that are currently under-represented.

Understanding barriers in stem cell transplant

As the Secretariat for the All-Party Parliamentary Group (APPG) on Stem Cell Transplantation, we supported an inquiry into the barriers to accessing care and support that patients face because of their background. This included ethnicity, socio-economic status and where people live in the country. 

Read the full report

Access to new therapies

Our Policy and Public Affairs team works with the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC), which are responsible for approving new treatments for use within the NHS. We represent patient experiences and views and explain the impact potential treatments could have for patients and their families.

New therapies we have advocated for access to

Exa-cel 

We worked with the Sickle Cell Society to help the sickle community access new and innovative treatments which address their needs and reduce health inequalities, such as the new gene therapy exa-cel. 

Ruxolitinib

We supported  both the SMC and NICE to bring ruxolitinib to the NHS. Ruxolitinib is an important treatment option for patients with acute graft versus host disease (aGvHD).

Other medicines appraisals that we have successfully supported include:

  • The NICE appraisal of obecabtagene autoleucel for treating relapsed or refractory B-cell acute lymphoblastic leukaemia.
  • The NICE and SMC appraisals of axicabtagene ciloleucel for the treatment of adult patients with diffuse large B-cell lymphoma (DLBCL) and high-grade B-cell lymphoma (HGBL) after one prior systemic therapy.
  • The SMC appraisal of rezafungin acetate for the treatment of invasive candidiasis in adults.
  • The NICE appraisal of tisagenlecleucel for treating relapsed or refractory B-cell acute lymphoblastic leukaemia in people aged 25 and under.
  • The SMC and NICE appraisals of belumosudil for treating chronic graft versus host disease after 2 or more therapies.
  • The SMC appraisal of brexucabtagene autoleucel for treatment of adult patients 26 years of age and above with relapsed or refractory B-cell precursor acute lymphoblastic leukaemia (ALL).
  • The SMC appraisal of maribavir for the treatment of cytomegalovirus (CMV) infection and/or disease that are refractory (with or without resistance) to one or more prior therapies, in adult patients who have undergone a haematopoietic stem cell transplant (HSCT) or solid organ transplant (SOT).
  • The SMC appraisal of treosulfan in combination with fludarabine as part of conditioning treatment prior to allogeneic haematopoietic stem cell transplantation (alloHSCT) in adult patients with malignant and non-malignant diseases, and in paediatric patients older than one month with malignant diseases.