International Clinical Trials Day 2015 – 20th May

Each year, the International Clinical Trials Day, is celebrated around the world on or near 20th May to commemorate the anniversary of what is considered the first clinical trial – conducted by James Lind, a Scottish naval surgeon, in 1747 on the deadly disease scurvy.

This day provides a focal point for international communication events, meetings, debates, and celebrations of clinical research, which contribute to development of new and more effective treatments, ways of looking after patients and keeping people healthy.

Every year a significant number of MDS patients take part in clinical research to help experts evaluate the latest treatments for MDS and to help other patients in future. Often, research participation allows MDS patients access to potentially beneficial treatments, which they would not be able to access otherwise.

Considering the benefits of clinical research, the International Trials Day aims to raise awareness of the importance of research to health care and highlights how partnerships between patients and healthcare practitioners are vital to high-quality, relevant research. This is why a number of healthcare providers, researchers, universities and public bodies, all over the country, are hosting series of activities, meetings, events and gatherings to involve public in the research they do.

ok-to-ask-header“OK to ask” is the National Institute for Health Research campaign to encourage more patients or carers to ask about research opportunities that could be available to them or their loved ones, if they have a medical condition they are receiving treatment for. Currently, recruitment into clinical trials is largely clinician-led. The aim of the “OK to ask” campaign is to change that. Click here to find out more about the National Institute for Health Research and their campaign.

Don’t hesitate and find out how the Clinical Trials Day will be celebrated in your area – and get involved!

In particular, we would like to highlight a host of activities taking place at Barts Health in London, between 20 and 29 May 2015, for patients and members of the public, as well as staff, to find out about their many different research studies and ways to get involved.

Please click here to see the full schedule of activities for the Clinical Trials Day at Barts Health.

“Clinical Trials: Why bother?” talk by Professor Atholl Johnston, may be of particular interest to our patients. We spoke to Prof Atholl Johnston at the last European Heamatology Association (EHA) Congress, where he delivered a very useful and insightful presentation on Drug quality in generics, substandard drugs, copies – the pharmacologist perspective.


Click here to see Prof Atholl Johnston 2014 EHA congress presentation slides – Drug Quality in Generics Substandard Drugs & Copies

Click here to read our summary from 2014 EHA Congress.

Click here to see the VIDEO clips from all 2014 EHA talks

Russell’s stem cell transplant experience – new video

New video clip – Russell Cook’s stem cell transplant experience

We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook.

He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells from his 15 year old son Luke – which fortunately did work.

Russell has since gone on to run several marathons – and is doing extremely well.

Russell’s Stem Cell transplant from mds patient support on Vimeo.


A stem cell transplant is not an easy treatment option – nor is the decision to opt for a transplant.
If you are considering a stem cell transplant, please do have numerous conversations with your transplant team – until you have all the information you feel you need to make the decision.

Check the Anthony Nolan website, read the booklet “The 7 steps”.
All to be found on our Information Material webpage.

You may also talk to other patients – but do remember that every patient experience is fairly unique.
We have several other pages on our website that may help you as well.

Check our Useful links page – listing several stem cell transplant blogs – including practical tips on what to bring to hospital – how to cope for those 2-4 weeks in isolation, whilst the stem cells engraft.

If you are a healthy individual – aged 16 to 55 – please do consider registering to become a stem cell donor.
Your contribution and potential donation will save lives.
Contact Anthony Nolan or Delete Blood Cancer – visit our bone marrow donation page to learn more: Stem Cell Marrow Donation

You may also want to watch this great clip from our colleagues at the ACLT:


19th Congress of the European Hematology Association – 12th-15th June 2014

EHA logo

19th Congress of the European Haematology Association (EHA) has taken place this year between 12th and 15th June in Milan, Italy.

This event is set up for physicians and representatives of patient support groups to  promote excellence in patient care, research and education in haematology.

As part of the Worldwide Alliance of national MDS Patient support and advocacy groups, MDS UK representative – Sophie Wintrich – attended this event to better serve the MDS patient and caregiver community.Print
We have provided below a brief summary of the Patient Advocacy Track and activities.
As usual, interesting MDS clinical news and updates will be provided separately and posted on our website, Facebook and our Newsletter 6.
This year Dr Wendy Ingram in Cardiff kindly agreed to write up on MDS News at EHA.

This year for the first time, the EHA congress program is complemented by a dedicated Advocacy Track. This track combines all patient and policy related sessions into one, comprehensive yet very diverse program for those interested in advocacy in haematology, patient advocacy and other related topics; and will involve:

  • EHA Patient Advocacy Booth (booth #206)

This is a central meeting place of all patient advocates and their peers

EHA booth1-web   EHA booth3-web

  • Patient Advocates Meeting (FRI 11:30-12:30, Room Yellow),

This is a meeting for all patient advocates in order to strengthen collaboration and links between our patient advocacy groups

EHA patient meeting1-web   EHA patient meeting3-web

  • Patient Advocacy Session “Generics in Haematology: The doctors’ and patients’ perspective” (Sat 8:00-9:15, Room Amber 5+6 SW 2)

This session will outline how patients can be involved as partners in clinical research and how the challenges of informed consent, trial results, and ethics in bio banking can be turned into opportunities.
EHA19 Chair Comments – Part 1 – Generics in Hamatology: The doctors’ and patients’ perspective
Jan Geissler

EHA19 Chair comments – Part 1 – Generics in Hematology: The doctors’ and patients’ perspective
Androulla Eleftheriou

Drug quality in generics, substandard drugs, copies – the pharmacologist perspective
Atholl Johnston

Use of generic drugs and discussions with the government on drug quality
Mahmoud Hadipour Dehshal

The hematologists’ clinical perspective
Ivana Urosevic

The patients’ perspective
Sarunas Narbutas

VIDEO clips of all talks here

  • Patient Advocacy Session “The challenges of young patients with old people’s diseases” (Sat 9:30-10:15, Room Amber 5+6 SW 2

Old people’s diseases in young patients with chronic rare anaemias, Sexuality, fertility, family planning in haematological diseases.

  • ESH-EHA Joint Symposium “What do you mean, he can’t have the treatment?  An interactive session for haematologists and patients” (Sat 11.45-12.45, Amber 5+6 SW2)

This  renowned interactive EHA/ESH Joint Symposium will deal with how to explain to a patient that he/she can no longer receive treatment that is endorsed by national guidelines as her/his best option, or, in short: ‘what do you mean, I can’t have the treatment’?
EHA-ESH session-web

This interactive role playing session showed the importance of doctor patient communication in consultation – as well as patient – family interaction.  MDS UK gets many calls from patients who don’t feel comfortable asking too many questions, or requesting an additional opinion from an MDS expert at a Centre of Excellence.  Doctor patient communication is sometimes not easy for either party, especially when it comes to difficult diagnosis – but it can be improved.

  • EHA-ASH Joint Symposium “Access to medicines and fair pricing: The cost of innovative drugs” (Sat 14 June, 13:15-14:15, Room Silver, NW 2)

This EHA/ASH Joint Symposium will present a transnational view on the effects of the financial and economic crises, happening against a backdrop of an ageing population and an increasing prevalence of non-communicable diseases that weighs down heavily on health care budgets.
EHA-Drug price-web     EHA-drug price2-web
This was a really interesting session, inviting Prof JL Harousseau (ICO, France) and R Bergstroem, (EFPIA), to discuss the reasons why drug prices are so high.
Prof Harousseau is professor of haematology at the University of Nantes, France and Chairman of the French National Authority for Health (HAS). HAS can be compared to NICE, but operates more independently from Government.  He was questioning why more can’t be done to lower prices by using drug volumes.  He also asked why drug prices are identical, whatever the added benefit.
R Bergstroem is head of EFPIA: The European Federation of Pharmaceutical Industries and Associations represents the pharmaceutical industry operating in Europe.
He argued that Research and Development costs of past and future drugs need to be paid for, and that industry researchers are entitled to become millionaires or multi-millionaires (sic) should their drugs be effective and successfull.   Marketing of those drugs also needs to be paid for.

We thought that the questions were extremely good ones, but sadly, the head of EFPIA failed to raise to the challenge to answer them in a tone and professionalism this EHA audience of doctors and patient advocates expected.  Very disappointing.
The topic of drug prices is a truly difficult one – and will require a lot more flexibility from all involved to make innovative drugs available.

VIDEO – JP Harrousseau at EHA 2014

  • EHA Advocacy Session “The Future of Haematological Research in Europe” (Sat 14 June, 16:15-17:30, Room Amber 5+6, SW 2)

This is EHA’s own advocacy session highlighting EHA’s advocacy work and illustrating the importance of politics by the case of personalised medicine.

  • Scientific Working Group on Quality of Life (Thurs 18.30-20.00)

We welcome the addition of the Advocacy Track to the EHA congress programme and encourage our members to access the webcasts of the relevant sessions, which will be freely available to all on EHA website.

We will also post them on our website – when they become available – and open them up for comments on our on-line discussion forum.

We just added some photos of the EHA congress and the very successful Patient Advocacy Track, attended by many physicians and patient advocates from all over the world.

We thank the EHA Board again for their continued support, partnership and cooperation with patient advocates and look forward to EHA 2015, with some exciting new themes for the now very well established EHA Patient Advocacy Track.
We also congratulate this year’s EHA President Dr Christine Chomienne and all of the EHA teams and contributors for the most successful EHA congress to date – with an amazing 10.400 attendees.
And many thanks to patient advocate Jan Geissler from EUPATI and CML Advocates, for being such a strong and passionate spokesperson for all patient advocacy issues.
Finally thank you to all patient support group representatives and colleagues who attended EHA this year, helped man our patient advocacy booth, answered physician queries and requests and contributed to all patient advocacy sessions.
We hope to see many more of you at EHA 2015 in Vienna!

UPDATE – SEPTEMBER 2014 – video clips of most talks are now available from the EHA website:

Videos for 2013 EHA Advocacy sessions are available here:
EHA Advocacy 2013 – talks

 EHA booth4-web

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