This ground-breaking animation for MDS World Awareness Day 2020 aims to raise awareness of MDS (Myelodysplastic Syndromes) to create an accessible story for newly diagnosed patients and their loved ones, signpost them to help and support and raise funds for MDS UK.
Wider research work by MDS UK:
We would aim to use any donations to help us cover the costs arising from our involvement in, and contribution to, MDS-related research.
MDS UK staff, committee members and expert patients are involved all year round in different aspects of research, including addressing the issue of access to MDS treatments.
We regularly provide input to Patient and Public Information (PPI) work, for both commercial and non-commercial clinical trials.
We are financially compensated for some of this work, but not all.
This work entails revising, and often improving, patient information documentation, as well as sometimes commenting on the overall setup of a trial, to ensure it meets the true needs of patients.
Through our work and services to our member patients and families, we now have the most extensive list of MDS patients in the UK – an invaluable resource for real patient feedback for all researchers, and for all the leading MDS experts we work with closely.
We conduct patient surveys and focus groups among our membership base, ensuring we capture their wishes and are mindful of their concerns. We then feed that information back to clinical trial investigators, as well as to ethics boards who have to approve clinical studies.
Through our input to the European Medicines Agency (EMA), and National Institute of Clinical Health and Excellence (NICE),we have been heavily involved in work undertaken in order to make MDS drugs accessible to patients.
This type of work helps to ease and speed up the process of licensing of drugs, and their financial approval for use in the NHS.
Patient groups like us play an absolutely crucial role in this area, and can make the difference between a drug being accessible, or not.
Of note, our work was pivotal in the case of enabling access to azacitidine and lenalidomide, the first two MDS-specific drugs to be made available in the UK.
Clinical research and medical trials are essential but, without access to the proven effective drug, they are of no benefit to patients.
In terms of access to drugs, we also discuss with various pharmaceutical companies the compassionate use in individual cases. We would like to see all pharma companies making a wider effort to provide drugs on such a basis, again in specific and selected circumstances.
Having funded one PhD research project (at Queen’s University, Belfast ), we are also considering funding more direct research, should our funds allow us to do so in future.
This ‘wider research and access work’ takes time, effort and energy, and therefore needs to be funded somehow.
Without this work, ethics boards would not approve trials, EMA and NICE processes would be delayed, and access to drugs might be compromised. And, above all, the voice, needs and wishes of patients would not be heard or considered.
If you have found this topic of interest and would like to support us in such work, we would welcome any donations, however small. If you can, please use Gift Aid to enhance the value of your donation to us by 25%, at no additional cost to yourself.