News Archives - MDS UK Patient Support Group

COVID-19 vaccines and MDS: Approvals and Advice from UK MDS Forum of experts

Posted on 09/01/2021 at 7:45 am.

Advice on the Covid-19 vaccines from the government and MHRA:

Both Pfizer/BioNTech vaccine and Oxford University/AstraZeneca vaccines have been deemed safe for MDS patients. There are no known risks to cancer patients, or those on cancer treatment.

Patients with an immune compromised system will still need to shield even after receiving the vaccine, as the protection may not be as effective as in healthy individuals.

Gap between doses of the vaccine

There has been some discussion on the decision to extend the gap between the 1st and the 2nd dose of the vaccines. The consensus is that a 12 week gap (instead of the 3 week in the clinical trials) will generally not be detrimental.

However, the current thought is that patients with an immune compromised system, who are less likely to fully respond to the vaccine, should have the 2nd dose sooner rather than later. This will still need to be confirmed.

Allergies

Patients with a known allergy to any of the ingredients in either vaccine should NOT have these vaccines. BUT patients with allergies such as food, CAN now have the vaccine.

Click here for more information: https://www.gov.uk/government/news/oxford-universityastrazeneca-covid-19-vaccine-approved

STOP PRESS: A third COVID-19 Vaccine developed by Moderna has just been approved (08/01/2021) by the MHRA in the UK

The COVID-19 vaccine developed by the pharmaceutical company Moderna has today been given regulatory approval for supply by the Medicines and Healthcare products Regulatory Agency (MHRA). This follows a thorough and rigorous assessment by the MHRA’s teams of scientists, including advice from the independent Commission on Human Medicines, which reviewed in depth all the data to ensure this vaccine meets the required standards of safety, quality and effectiveness.

This is the third COVID-19 vaccine to be approved for use by the MHRA and is the second mRNA vaccine (the Pfizer/BioNTech vaccine approved in December 2020 is also an mRNA vaccine).

Click here for more information: https://www.gov.uk/government/news/moderna-vaccine-becomes-third-covid-19-vaccine-approved-by-uk-regulator

The COVID-19 vaccine developed by Oxford University/AstraZeneca has today (30 December 2020) been given regulatory approval by the Medicines and Healthcare products Regulatory Agency (MHRA) after meeting required safety, quality and effectiveness standards.

Following a rigorous, detailed scientific review by the MHRA’s expert scientists and clinicians and on the basis of the advice of its scientific, independent advisory body, the Commission on Human Medicines, the UK regulator has approved COVID-19 Vaccine AstraZeneca for use across the UK.

MHRA Chief Executive Dr June Raine said:
"We are delighted to announce the good news that the Oxford University/AstraZeneca vaccine for COVID-19 is now approved for supply following a robust and thorough assessment of all the available data."

"A huge collaborative effort and commitment goes into these assessments which include reviewing vast amounts of data. Our staff have worked tirelessly to ensure we continue to make safe vaccines available to people across the UK."

"No stone is left unturned when it comes to our assessments. This approval means more people can be protected against this virus and will help save lives. This is another significant milestone in the fight against this virus. We will continue to support and work across the healthcare system to ensure that COVID-19 vaccines are rolled out safely across the UK. Protecting health and improving lives is our mission and what we strive for."

The Oxford University/AstraZeneca vaccine has been approved for use for people 18 years or older and consists of two doses, with the second dose administered 4-12 weeks after the first dose. The transportation and storage requirements for this vaccine mean that it needs to be kept at temperatures of 2C to 8C, which is similar to a conventional fridge for up to six months and can be administered within existing healthcare settings.

Read the full article: https://www.gov.uk/government/news/oxford-universityastrazeneca-covid-19-vaccine-approved

COVID-19 vaccine advice for patients with haematological disorders by the British Society for Haematology

This statement produced by the British Society for Haematology, has been reviewed by the Intercollegiate Committee on Haematology, on behalf of the Royal College of Physicians of London and the Royal College of Pathologists. Specialist haematology groups also contributed.

"The Pfizer/BioNTech COVID-19 vaccine has been authorised for use by the Medicines and Healthcare products Regulatory Authority (MHRA), it was introduced into use in the UK on 8th Dec 2020. This is not a ‘live’ vaccine so should be safe for most patients with blood cancer. It is likely that other vaccines will be authorised and be available over the coming weeks.

Patients with haematological conditions will be invited for the vaccination over the next weeks and months and many will fall within the priority groups for vaccination.

Patients who are receiving chemotherapy or immunosuppression should discuss with their hospital clinicians if they can safely receive the vaccine and optimal timing of administration. There is no current evidence that the vaccine might be a risk to the immunosuppressed patient. This document aims to support medical staff in providing this advice and has been collated from information currently available and from expert opinion. It will be updated as more information becomes available."

Click here for more information: https://b-s-h.org.uk/media/19195/haematology-covid-19-v10-vaccination-statement-231220.pdf
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EMA (European Medicines Agency) approval of the Pfizer/BionTech Covid-19 vaccine

The EMA (European Medicines Agency) approved the Pfizer/BionTech Covid-19 vaccine, which the MHRA had approved for the UK. This is an additional source of validation and reassurance, from the institution which the UK has depended on for many years, until Brexit. You will read that the plan is clearly to continue monitoring all people being vaccinated, and especially those with an immune compromised system.
Again – as MDS patients, do agree to be vaccinated with this Pfizer/BionTech vaccine, with the precautions we highlight below. The work carries on, evaluating all the other vaccines in the pipe-line, and we hope to have more news in early 2021.

Additional information on the first COVID-19 vaccine, Comirnaty, published on the EMA website:

CHMP assessment report, in English
Translations in all EU languages of the medicine overview
Translations in all EU languages of the product information
Full body of the core Risk Management Plan (plus Annex 4), in English

The documents can be accessed by clicking here.

Please check EMA’s dedicated webpage on COVID-19 for the latest updates

MDS patients are asking about the safety and advisability of the vaccines, on the background of being amongst the highest risk groups for COVID-19.

In the current absence of precise information on the safety and efficacy of the current Covid-19 vaccines in patients with blood cancers, we asked the UK MDS Forum (MDS expert group in the UK), for their initial opinion, and they produced the following guidance.

http://www.ukmdsforum.org.uk/

UK MDS Forum guidance:

There is currently only one licensed and available vaccine for Covid-19 – the Pfizer/BioNtech vaccine.

This is a not a ‘live’ vaccine and therefore should be safe for blood cancer patients, including MDS patients. The Joint Committee of Vaccination and Immunisation (JCVI) have set out a prioritisation for persons at risk, including those who are defined as clinically extremely vulnerable (CEV). This can be found on the government website (NHS UK Coronavirus JCVI ).

The consensus is that generally, for blood cancer patients, the benefits of the vaccine far outweigh any potential side effects of the vaccine and the risks associated with having COVID-19 infection. Therefore, vaccination is recommended, except in people with a history of severe allergic reactions.

As time goes by, other vaccines will become available, and they will be assessed on their own merit, depending on precise details of the trial population (e.g. – was it tested on immuno-compromised or blood cancer patients?)

For now, we are only looking at the Pfizer/BioNtech vaccine.

Which MDS patients should get the Pfizer/BioNtech vaccine?

The MAJORITY of MDS patient should be receiving the Pfizer/BioNtech vaccine.

This will include:

All MDS subtypes regardless of age
All IPSS & IPSS-R risk groups
MDS patients on watch & wait or treatment, now or in the past
MDS Patients on clinical trials

Which MDS patients should exercise caution regarding the vaccine, and speak to their haematologist before receiving the vaccine?

patients with a known severe allergy
patients who carry an EPI-PEN
Patients who have a low platelet count who may bleed or bruise at the injection site. To reduce this risk, we recommend the platelet count should be 30 x 10⁹/l or above and that prolonged pressure at the injection site should be applied for 5 minutes. Those receiving regular platelet transfusions should have their vaccine after a platelet transfusion. If the platelet count is less than 30 x 10⁹/l and the patient is not receiving regular platelet transfusions, they should discuss with their haematologist.

Post-transplant haematology patients should speak to their haematologist and/or transplant team, who will follow the up-to-date advice from British Society of Bone Marrow Transplantation (BSBMT).

What remains to be decided?

Whether it will be the hospital or GP who will administer the Pfizer/BioNtech vaccine to blood cancer patients.

Whether the vaccine will offer a sufficient level of protection against COVID-19 in immune-compromised and blood cancer patients.

What will patients need to do post vaccination?

As the effectiveness of the Pfizer/BioNtech vaccine may not be guaranteed in immune-compromised patients, it will be necessary for all vaccinated patients to maintain social distancing and follow the currently recommended government precautions against COVID-19. These precautions are updated regularly on www.gov.uk/coronavirus.

These precautions will need to be maintained until the COVID-19 pandemic is over, or until it can be proven that the Pfizer/BioNtech vaccine works well enough in immune-compromised patients.

What about the alternatives to the Pfizer/BioNtech vaccine?

Editor's Note: Both Moderna & Oxford University/AstraZeneca vaccines were approved by the UK regulator after this recommendation was written.

The Pfizer/BioNtech vaccine is the only licensed and approved method to protect patients from COVID-19. There are 2 further COVID-19 vaccines under review, which may become available, but nothing is certain. There is also an on-going antibody clinical trial from Astra Zeneca, which in time could be available, for patients who cannot be vaccinated. It may even be used as a prophylaxis (preventatively) for patients in care homes for example. BUT - again – it is unknown if, and when any of these options may become available in the future. Hence the recommendation is to have the Pfizer/BioNtech vaccination, when it will be offered.

Efficacy of the Pfizer/BioNtech vaccine and longer-term thinking?

To check the full efficacy of the Pfizer/BioNtech vaccine, the plan is to set up a monitoring study to measure the COVID-19 antibody response in blood cancer and immuno-compromised patients.

This anti-body response will be measured through a blood test.

If the antibody response is less than required to guarantee COVID-19 protection, it is thought that patients may then still have the option of a new vaccine, or the antibody option, if these become available.

Further advice will be made available, as more data is shared with clinicians and carefully analysed, and as the government and/or regulatory agencies issue more guidance on specific sub-groups of patients.

Specific advice and guidance will be given for each new vaccine, each MDS sub-group, and age group of MDS patients.

• Pfizer/BioNtech: 95% effective in a study of 43,000 people. The trial also looked at people aged 65 and over, whose immune systems are weaker than those of younger people. In this older group, 94% effectiveness was observed. This vaccine works by taking part of the genetic code of the coronavirus and putting it in a vaccine. Once injected, this code tells our cells to produce a protein found on the surface of the coronavirus. Our immune systems respond to this and ‘remember’ what coronavirus looks like. When encountered again, our body will recognise it, allowing us to respond quickly to avoid becoming ill.

• Moderna: Similar technology to the Pfizer/BioNtechvaccine. This saw 95% effectiveness levels in a study of 30,000 participants. They looked specifically at 7,000 people over the age of 65, as well as people with diseases that put them at high risk of complications from the coronavirus, such as diabetes and cardiac disease.

• Astra Zeneca Oxford: This vaccine is made from a modified version of a virus that causes the common cold in monkeys. Researchers have inserted a gene in this vaccine, which when injected, prompts our bodies to make a protein found on the coronavirus. This is NOT a protein that will cause infection. Our immune system should then respond to this, preventing infection in the future. This vaccine has been shown to be between 60 and 90% effective depending on how doses are administered in a clinical trial of 20,000 people.

All vaccines undergo a review by the Medicines and Health Regulatory Agency (MHRA) (in the UK). Other regulatory agencies, such as the European Medicines Agency (EMA) and the Food and Drug Administration (FDA) in the USA will conduct their own assessment.

The EMA ran a public meeting on the topic: “Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU Live broadcast - 12noon - 15:30 (GMT) ; Event summary ; Documents

More information on COVID-19 vaccines via our colleagues at Blood Cancer UK

This summary was created by the MDS UK team and approved by the UK MDS Forum experts:

Prof G. Mufti, Dr D. Culligan, Prof D. Bowen, Dr S. Killick, Dr A. Kulasekararaj

References:

Blood Cancer UK https://bloodcancer.org.uk/news/coronavirus-vaccine-what-you-need-know/ Professor Mark Drayson, Dr Graham Collins, Dr Karthik Ramasamy and Dr Matthew Buckland.
MHRA vaccine approval https://www.gov.uk/government/news/uk-medicines-regulator-gives-approval-for-first-uk-covid-19-vaccine
JCVI https://www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-25-september-2020/jcvi-updated-interim-advice-on-priority-groups-for-covid-19-vaccination - 2nd Dec: No data is currently available on the efficacy of COVID-19 vaccines, and initial data from smaller early trials provides only limited information on safety. This is the start of a longer process, and the advice provided at this stage is subject to change. There are a number of unknown factors about any potential vaccines, and there are still important gaps in our understanding of COVID-19. The committee will be keeping its advice under review and as more information becomes available will update its advice as and when deemed appropriate. Specifically, this advice will be updated as more information becomes available on: vaccine efficacy and/or immunogenicity in different age and risk groups, the safety of administration in different age and risk groups, the effect of the vaccine on acquisition of infection and transmission, the transmission dynamics of the SARS-CoV-2 virus in the UK population, the epidemiological, microbiological, and clinical characteristics of COVID-19
Covid-19 – antibody jab: https://www.bbc.co.uk/news/health-55022288
ASH https://www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines
EMA https://www.ema.europa.eu/en/news/ema-organises-public-meeting-covid-19-vaccines
EMA event https://www.ema.europa.eu/en/events/public-stakeholder-meeting-development-authorisation-safe-effective-covid-19-vaccines-eu
Extremely vulnerable letter https://www.gov.uk/government/publications/covid-19-letters-to-clinically-extremely-vulnerable-people

MDS UK wishes for a healthy, safe Christmas and a much improved 2021!

Posted on 24/12/2020 at 9:03 am.

Written by Manuela Rotstein

Dear MDS UK members,

We hope you have been coping as best as possible during this very difficult year for everyone.

From the many phone calls and emails we have received since March 2020, we know how worried you have been about Covid-19. At the height of the pandemic, our phone line was open 24/7 and the phone was indeed ringing all day. We hope we have been able to assist you in some way.

Many of you have been feeling even more isolated than ever before. You have had issues about access to your GP. Thankfully, our Covid-19 MDS survey shows that most haematology departments managed to maintain good care services, thanks to amazing staff.

As a small charity, we have tried to do our best, in very difficult circumstances, with all 4 staff members working from home, in the midst of growing financial concerns, due to the cancellation of all of our fundraising events.

We had some fantastic achievements despite these difficulties, and have experienced true silver linings, thanks to all of you, the NHS staff, our committee members, our coordinators and our own staff.

For instance, we have been amazed at the creativity of many of you, our members, taking part in the 20for20 fundraising campaign – and the incredible generosity of donors.

This campaign managed to raise just over £40,000 for the charity. These funds have been an absolute lifesaver, as our financial reserves have dangerously dwindled this year, causing us serious concerns for the future.

Despite these hurdles, we have managed to keep going.

Information to members

We have worked closely with all MDS experts, to provide up to date information regarding NHS haematology services, treatment recommendations, MDS clinical trial news and now guidance about the upcoming Covid-19 vaccine.

We have responded to a record number of new membership requests and phone calls. I had great phone calls with so many of you. Another silver lining, as we got to know each other even better.

We know we sometimes struggled to respond to the many phone calls and emails.

So, thank you for your patience in those circumstances.

Together with so many of you, we embraced online technologies, and set up virtual zoom meetings, enabling patients to speak and see one another, as well as get access to Q&A sessions with experts.

That has been the other significant silver lining! So many of you reported how enjoyable and welcome these meetings have been. We have seen so many new faces too – a real joy and relief from this COVID-19 isolation.

Research and access to treatment

We co-worked on two MDS clinical trials. One (Repair-MDS) will start recruitment in early 2021.

It is a particularly exciting trial, as it uses ‘repurposed drugs’, meaning it will use existing drugs with a different purpose (MDS), and will therefore be much cheaper to use, if the trial is successful of course.

For the other trial – we are waiting to heart whether it will be approved. That trial aims to improve the diagnosis and care of fungal infections in haematology patients.

Re access to treatment, we have campaigned tirelessly with our international colleagues, to gain early access to the new MDS drug Luspatercept, designed to help transfusion dependent patients diagnosed with the RARS MDS sub-type. Unfortunately, the pharmaceutical company has still not given any indication of when they may submit their approval request to NICE, nor have they agreed to any compassionate use of the drug. We have been promised more information on this topic in January 2021.

Let’s hope this promise is kept!

The PhD project at Belfast University Hospital, which we are funding, thanks to 3 major legacies, is progressing nicely. We will provide an update in January, which will mark the end of the 1st year of work. Three more years to go till results!

For awareness of MDS

We will share our new MDS awareness cartoon ‘Myelo’s Hope’ more widely and ask more hospitals to share it on TV’s in their waiting rooms. If you have the opportunity, be an MDS Ambassador and please speak to your haematology staff about it. Share how much MDS UK is helping you, so that future MDS patients don’t have to trawl the internet looking for information.

We worked lots more on the international scene too, as part of the MDS Alliance, contributing to European projects like Harmony and EuroBloodNet, which aim to improve treatment and care for several blood diseases, MDS included.

In 2021

We have prepared more online meetings, with more people, more locations, more speakers, due to popular demand.

We also aim to restore the paper newsletter, which has much suffered during this Covid year.

We’ll report on the first results of the MDS – Covid-19 survey, which over 300 of you completed in the last few months. Thank you so much!!!!

We’ll keep reporting on and assisting with information on the new vaccines which may get approved by early 2021. We also hope to provide more news on efficacy in blood cancer patients, thanks to the wonderful team of MDS experts we work with closely.

I take this opportunity to thank all of them. From our own official scientific advisors, Dr Dominic Culligan, Prof Bowen and Dr Austin.

All of the UK MDS Forum team of experts are phenomenal in their willingness to support us and their readiness to supply advice and information.

A very special thank you to Dr Simone Green, who works on the MDS clinical trials news page – so essential to patients and general haematologists alike.

We leave you with a few words from some of our MDS UK committee members and staff, whom you had the chance to meet during some zoom meetings this year.

Greetings Everyone in our MDS Community!

This last year has certainly tested the resolve and strength of all those suffering with MDS and their carers. Despite the new Covid vaccine, it would seem that the pandemic is going to remain with us for some time to come. MDS-UK staff, our Central Committee and our many supporters have responded magnificently to the issue of support and fundraising during these troubled times. I want to say thank you to all those involved in enabling us to continue our support and service provision to our MDS Family, as well as our clinical research. Our targeted Zoom meetings have been one positive outcome, proved popular and have helped to reach some of those who would not normally have attended traditional meetings. Obviously, as the pandemic evolves we must continue to think of new, innovative ways to fund our Charity and I would ask everyone to consider possible alternative future fundraising ideas.

I know many of you have been experiencing difficult journeys with your respective MDS and, sadly, some have departed this life during the year. To those grieving, we remain here for you and to those who have recently started their MDS journeys, I wish you every success with your various treatments. I have undergone a stem cell transplant during lock-down and I am on a journey of recovery and look forward to once again fully participating in the management of MDS-UK in 2021.

2020 has been a difficult year for all, however, I wish you the best Christmas possible and a better and safer 2021.

Best Wishes

Ted Peel, MDS UK Chair

2020 has been a very difficult year for us all, but particularly for extremely vulnerable MDS patients who have had to deal with threat of COVID and the disruption to lifestyles resulting from the response to this threat.
However, as in all bad times, there are lots of good things ongoing in the background. The COVID vaccine is top of the list and will be a crucial part of the way forward for most MDS patients. The superb work of MDSUK in supporting patients through these times has been inspirational and we must thank Sophie and all her colleagues for this invaluable work.
From the medical point of view research has continued to take small steps forward in improving the treatment and outlook for patients with MDS. Sophie rightly highlights luspatercept, which is an important new therapy for some anaemic patients with MDS with ring sideroblasts.
I would also like to highlight the funding of the REPAIR MDS trial, which hopefully will start recruiting patients during 2021. Having been involved with the NCRI MDS Clinical Trials Group since its inception many years ago it is heartening to see a major randomised trial, which will be accessible across much of the UK, come close to fruition after more than four years of planning. Hats off especially to the team in Birmingham and also to colleagues on the NCRI MDS Clinical Trials Group for this sterling effort.
I would like to wish you all the very best for Christmas and for a better 2021.

Dominic Culligan
Scientific Advisor, MDS UK

2020 has been a watershed year for our charity. Despite the challenges set before us we have managed, somehow, almost miraculously, to ensure that we still have some level of fundraising. I would like to take the opportunity to thank all of our supporters, our patients, and the families and carers of those patients for their most tremendous endeavours this year. We can't have done it without you. Next year brings new challenges and this Christmas will not be without some concerns, so my New Year wish would be that the charity becomes ever more active and encourages even more people to become involved with us.
Merry Christmas and a happy New Year

Russell, Head of Fundraising and Deputy Chair

"During my lifetime I’ve had a few dodgy years. Never in my wildest dreams did I imagine collectively we would all go through so much in 2020. I was diagnosed with MDS 20 years ago. I’ve looked after my health and protected myself ever since. What’s hard about the pandemic is that those of us with wonky immune systems are now reliant on everyone else doing the right thing.

I have been impressed by all the changes that haematology departments have made to keep patients safe. I’ve represented patients in discussions about these changes and will continue to be a strong advocate for our MDS community."

Hope this is ok. Keep safe everyone and I hope you all have a happy and healthy Christmas.

Take care, Kes

Love is what’s with you in the room at Christmas if you stop opening your presents and listen.

Our online Support Group Meetings have been a great way for everyone to meet this year. We have been lucky enough to have wonderful Doctors, Consultants and CNS Nurses join many of these meetings. For anyone who has never joined a zoom call or a local meeting in previous years you really must join in 2021. I have had the joy of laughing with so many of you, over this very strange, and isolating year. I would like to say a huge Thank You

Wishing everyone a Merry Christmas and a healthy and happy 2021.

Caroline, Office & Database Manager

I'd like to say a huge thank you to everyone at MDS UK for making me feel so welcome in my first 9 months here! It's been a challenging year to say the least but it's been great getting to know many of you so far and your inspirational stories spur me on!
There's too many great individuals to mention so another big thank you to everyone who has fundraised / donated to MDS UK this year.
With many of our biggest events cancelled or postponed, the determination of you all to help keep our work going is remarkable!

Wishing you all a merry Christmas and (hopefully) a better and less stressful new year! Looking forward to speaking to more of you in the months to come!

Jan Edwards, Fundraising Officer

My A-Z of 2020!

Absence -it really does make the heart grow fonder when you cannot see family and friends

Berries -of all kinds from our allotment

Coronavirus -the frightening cause of it all

Depression -finding strategies to avoid feeling low and Deaths -too many unnecessary ones.

Energy -newfound in the Spring, sowing seeds for garden and allotment

Fundraising -and Focusing on something positive

Grandchildren -oh, how we’ve missed them.....

Holding their hands, hugging and just hanging out with them

Information - so much to absorb

Judging friends on their COVID behaviour and attitudes (!)

Kicking a ball with grandchildren in the garden when allowed in the summer

Loving my husband so much for shielding and protecting me by being Head Shopper and Errand Boy!

My Mum who is 92 but has embraced Face Time!

Nice meals with fresh produce from our allotment

Opportunities to meet new people from MDS community

Power walks for my 20 for 20 project

Questions Questions Questions. (Aren’t scientists amazing?!)

Re-assessing priorities in life

Surprised by support and kindness of neighbours and friends in my fundraising efforts

Twenty for Twenty and meeting such a great group of people in the fundraising group

Unbelievable ignorance from a politician from across the pond and elsewhere with hoax stories and fake news

Vaccines, vials, validation, value - remains to be verified in long -term trials

Wintrich -Sophie - holding it all together, making massive changes to how MDS patients are supported

X -Xmas -not what we were promised but now safer for all

Year 2021 -hopefully an improvement for us all

Zoom -what else?! The great enabler of 2020! It helped us keep in touch, attend NHS,MHRA,EMA meetings, meet people with MDS from around the UK. My choir met every week so we got to sing some wonderful choruses - all muted!

Take care all

Have a safe, enjoyable Christmas and a wonderful New Year

Chris Dugmore Xx

I’d like to personally thank all of you for your collaboration, presence, engagement, support, feedback, generosity and willingness to share your experiences and emotions.

Your input is unique and irreplaceable.

Many of you have been a tremendous inspiration to newly diagnosed families, helping them through the first few difficult months after diagnosis, or during some tough treatment times.

Or, sadly after the loss of some of our members.

Thanking our great local group coordinators, who make everyone feel welcome and engaged in these new zoom meetings. An essential group of people, without whom the charity could not function.

Thanking our entire Committee for their volunteer work throughout the year. A hard working bunch, without whom this charity would not exist.

And our staff, especially the newcomers, Chaudian and Jan, who joined just as Covid started!

A challenging beginning for them.

And thanking our website editor Manuela for her brilliant work and advice.

This MDS community is stronger, louder, able to contribute to research and raise awareness of this rarer blood cancer.

A few practical details now:

Our office will be closed from:

Thursday 24th December at 6pm

to Monday 4th January 2021 at 9.30am

Hope to see you all for a return to work, bit refreshed, hopefully virus free.

If you do require medical advice or assistance, as ever, please call your nurse specialist at your hospital.

From all of us at MDS UK, staff, committee members and volunteers, we wish you a healthy, safe Christmas, and a much improved 2021.

Stay well, stay safe and hope to connect again in January 2021.

Sophie Wintrich, CEO MDS UK

Tel – 02077337558

Christmas Poem 2020 – by Kate D.

Posted on 20/12/2020 at 5:20 pm.

Written by Manuela Rotstein

Christmas Poem 2020 - by Kate D.

A tradition of traditions
that once a year
consumes us with
Nutcracker images,
ginger and spice,
stockings and F.C.,
a decorated tree.
But to me,
I look around and
see the secret of Christmas…
Beauty.

Lights twinkling,
a sparkle of
glitter and idealised
childhood Christmases.
I could go on, but I
stop as
Beauty is everywhere
if you look beyond the obvious.

Look at loved ones;
their smiles, their eyes-
gestures and laughter
from deep within.
Explore expressions of
excitement and pleasure,
surprise and comfort
when disappointment
and loneliness threaten to
takeover.

20for20 “Charity Shop”

Posted on 09/12/2020 at 9:25 am.

Written by Manuela Rotstein

Welcome to our "#20for20 Charity Shop". This is the place where our amazing fundraisers are swapping things for donations! What an excellent way to support MDS UK!

How does it work?

To Donate:

Take a look at the available items below and decide what you'd like to swap. More items will be added in the coming days.
Send an email to the address provided. Please put the name of the item in the subject
The fundraiser or Jan -our Fundraising Officer- will be in touch shortly thereafter
The fundraiser sends the item to your address!

To Fundraise using our "20for20 Charity Shop":

Look around your house or make something to swap!
Contact Jan at fundraising@mdspatientsupport.org.uk
Start fundraising!

Imerge (Imetelstat)

Posted on 08/12/2020 at 3:09 pm.

Written by Manuela Rotstein

SUB-TYPE OF MDS: Low risk MDS patients
SEVERITY OF MDS: IPSS Low or Intermediate-1 risk MDS
NAME OF DRUG: Imetelstat
Aims and benefits: This phase 2/3 study aims to determine the effectiveness of Imetelstat in transfusion dependent low risk MDS patients who have either lost their response or not responded to erythropoiesis-stimulating agent (ESA) treatment. The study has 2 parts. Part 1 seeks to determine the effectiveness and safety of Imetelstat, looking more closely at improvement in blood counts and reduction in transfusion requirements. Part 2 is double-blind and randomised to compare the effectiveness of Imetelstat with placebo.
Primary outcome:To determine the percentage of patients who have not required a red cell transfusion in an 8 week period.
Secondary outcome:To determine adverse effects, red cell transfusion independence, improvement in blood counts, progression to acute myeloid leukaemia and overall survival.

Myelo’s Hope Christmas Animation

Posted on 08/12/2020 at 2:03 pm.

Written by Manuela Rotstein

Christmas is just around the corner and it will look drastically different for millions of people across the globe this year. Hope and encouragement will be needed to find safe ways of enjoying the season.

Many of you will have seen Myelo's Hope the animation we released on MDS World Awareness Day which explains MDS in an accessible way and signposts patients and their loved ones to support.

Buoyed by the warm response, the animators have now released a fantastic festive version, further highlighting the issues in the original while calling for much-needed support!

A novel treatment for MDS patients in need of frequent blood transfusions

Posted on 09/11/2020 at 3:12 pm.

Written by Manuela Rotstein

The innovative drug Imetelstat has been trialed on patients with lower-risk MDS who are RBC (Red Blood Cells) transfusion dependent and have experienced relapse or not been helped by erythropoiesis-stimulating agent (ESA).

This group of patients does not have many treatment options at the moment.

In this press briefing, recorded at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam, Netherlands, Pierre Fenaux of St Louis Hospital, Paris, France, presents data on the use of Imetelstat in lower risk myelodysplastic syndrome (MDS) patients.

Scientists have observed that patients with MDS have a high telomerase activity in their stem cells. Telomerase is a naturally occurring enzyme, and its activity prevents cells from dying. Telomerase is repressed in most normal cells, preventing uncontrolled proliferation. In cancer cells, however, this enzyme is active.

Imetelstat, is a "telomerase inhibitor" and targets cells with active telomerase.

The study has reported that Imetelstat shows efficacy to control the enzyme and it's safe to use. It also reports biomarker data for patients with low-risk MDS who are red blood cells transfusion dependent and who were relapsed/refractory to erythropoiesis-stimulating agents.

About the study

The study is a two-part phase II/III study.

The primary endpoint (the main result that is measured at the end of a study to see if a given treatment worked) was 8-week red blood cells transfusion independence rate.

Key secondary end points were:

24-week red blood cells transfusion independence rate
transfusion independence duration
haematologic improvement-erythroid

Of 57 patients enrolled and treated (overall population), 38 were non-del(5q) and hypomethylating agent and lenalidomide naïve (subset population).

Encouraging results from phase II of the study

A Phase II trial is still early days in terms of clinical trials – to read more about how this trial progresses – see this page at ClinicalTrials.gov

The 8- and 24-week red blood cells transfusion independence rate in the overall population were 37% and 23%, respectively, with a median transfusion independence duration of 65 weeks.
In the subset population, 8- and 24-week red blood cells transfusion independence rates were 42% and 29%, respectively, with a median transfusion independence duration of 86 weeks.
Eight-week transfusion independence rate was observed across all subgroups evaluated.
Cytogenetic and mutational data revealed a reduction of the malignant clones, suggesting disease modification activity.
The most common adverse events were cytopenias, typically reversible within 4 weeks.

In conclusion, Imetelstat treatment results in a meaningful, durable transfusion independence rate across a broad range of heavily transfused patients with Low-Risk MDS who are ineligible for or relapsed/refractory to erythropoiesis-stimulating agents. Biomarker analyses indicated effects on the mutant malignant clone.

Authors

David P. Steensma, MD¹; Pierre Fenaux, MD, PhD²; Koen Van Eygen, MD³; Azra Raza, MD⁴; Valeria Santini, MD⁵; Ulrich Germing, MD, PhD⁶; Patricia Font, MD⁷; Maria Diez-Campelo, MD, PhD⁸; Sylvain Thepot, MD⁹; Edo Vellenga, MD, PhD¹⁰; Mrinal M. Patnaik, MBBS¹¹; Jun Ho Jang, MD¹²; Helen Varsos, MS, RPh¹³; Jacqueline Bussolari, PhD¹³; Esther Rose, MD¹³; Laurie Sherman, RN¹⁴; Libo Sun, PhD¹⁴; Ying Wan, MD, PhD¹⁴; Souria Dougherty, BS, MBA¹⁴; Fei Huang, PhD¹⁴; Faye Feller, MD¹⁴; Aleksandra Rizo, MD, PhD¹⁴; and Uwe Platzbecker, MD¹⁵

¹Dana-Farber Cancer Institute, Boston, MA
²Hôpital Saint-Louis, Université Paris Diderot, Paris, France
³Algemeen Ziekenhuis Groeninge, Kortrijk, Belgium
⁴Columbia University Medical Center, New York, NY
⁵MDS Unit, AOU Careggi-University of Florence, Florence, Italy
⁶Klinik für Hämatologie, Onkologie and Klinische lmmunologie, Universitätsklinik Düsseldorf, Heinrich-Heine-Universität, Düsseldorf, Germany
⁷Department of Hematology, Hospital General Universitario Gregorio Marañon, Madrid, Spain
⁸Hematology Department, The University Hospital of Salamanca, Salamanca, Spain
⁹CHU Angers, Angers, France
¹⁰Department of Hematology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
¹¹Division of Hematology, Department of Internal Medicine, Mayo Clinic, Rochester, MN
¹²Department of Hematology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea
¹³Janssen Research & Development, Raritan, NJ
¹⁴Geron Corporation, Menlo Park, CA
¹⁵Department of Hematology and Cell Therapy, University Clinic Leipzig, Leipzig, Germany

Trial to test existing drugs against rare blood cancer

Posted on 27/10/2020 at 3:13 pm.

Written by Manuela Rotstein

A new clinical trial for MDS has just been launched.

Designed by clinical experts, using existing (repurposed) drugs in a new way, with wide PPI (Patient and Public Involvement) input and feedback by MDS UK advocates and patients, funded via Bloodcancer UK.

This trial will test existing drugs against the rare blood cancer Myelodysplastic Syndrome to improve patients' outlook and health.

It is run by UoBbiosciences & Warwick Clinical Trials Unit.

Best practice and cooperation at all levels for research benefitting MDS patients.

By making a donation to MDS UK, you are also funding our time, for the work we conducted with patients, enabling the subsequent approval of this trial.

Full details:
https://www.birminghamhealthpartners.co.uk/trial-to-test-existing-drugs-against-rare-blood-cancer/

A clinical trial designed to test existing drugs in the treatment of a rare blood cancer has been launched at the Universities of Birmingham and Warwick.

Funded by Blood Cancer UK, the trial seeks to repurpose existing drugs to improve the outlook, health and quality of life for people with Myelodysplastic Syndrome (MDS), a condition in which the patient does not have enough healthy blood cells.

Called REPAIR-MDS (Repurposed drugs to improve haematological responses in Myelodysplastic Syndrome), the trial will test a number of treatments designed to improve the formation of healthy blood cells, reducing or reversing life-limiting deficiencies in red blood cells. The trial is expected to begin recruiting patients in May 2021.

Professor Chris Bunce, in the School of Biosciences at BHP founder-member the University of Birmingham, who led the application to Blood Cancer UK and whose research contributed to the design of the trial treatments, says: “REPAIR-MDS represents a significant turning point in UK medical research. It is the first ever UK randomised trial delivered in this neglected patient group, establishing the precedent for future trials in the UK and elsewhere.”

Professor Janet Dunn, Head of Cancer Trials at Warwick Clinical Trials Unit at the University of Warwick, says: “It’s an important trial for these patients as currently treatment options are limited. We are excited to be working closely with Birmingham and the patient groups, in particular Sophie Wintrich who is CEO from the MDS UK patient support group.”

Although rare, MDS is estimated to be more prevalent in older people, over 70 years old. There is currently no cure for the disease and treatment is usually chemotherapy-based, although in some cases a stem cell transplant may be possible.

Dr Fatima Sulaiman, Head of Research for Blood Cancer UK added: “Blood Cancer UK are really excited to be supporting this trial. We believe that within the next generation, we’ll be able to beat all types of blood cancer, and this trial will take us one step closer to doing this.

“Sadly, only 31% of people diagnosed with myelodysplastic syndrome (MDS) survive 5-years, and we urgently need better treatments. Being able to repurpose existing drugs for people with MDS would mean we would be able to get new treatments to people, sooner, giving everyone the best possible chance of survival.

“Anyone worried about blood cancer can call our free and confidential helpline on +44 (0) 808 2080 888.”

The project is a national effort by the UK MDS research community and will recruit patients from across the UK. The trial was developed by the National Cancer Research Institute (NCRI) MDS clinical studies sub-group and has arisen from research carried out in the School of Biosciences and the School of Medical and Dental Sciences at the University of Birmingham led by Professor Bunce. It will be carried out in collaboration with Queen Elizabeth Hospital Birmingham.

The funding of REPAIR-MDS by Blood Cancer UK has been made possible by a donation made in open competition to the charity from the Jon Moulton Charity Trust.

New animation to explain MDS to all

Posted on 25/10/2020 at 2:09 pm.

Written by mariano

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.

Click here to read more about how we represent the patient voice

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.

Click here to see more about our work on access to drugs

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.

25th of October: MDS World Awareness Day 2020 – Take Part!

Posted on 19/10/2020 at 9:17 am.

Written by Manuela Rotstein

It’s time to get your pens, brushes and camera out for MDS WAD on Sunday October 25th!

This is a crucial day for the worldwide MDS community to make a stand against this rare blood cancer and raise much needed awareness!

We would like to encourage as many people from MDS UK as possible to get involved, becoming part of a wider collective voice.

This year's theme from the MDS Alliance is "Faces of MDS", an education and awareness campaign involving sharing self-portraits and selfies with MDS facts.

Take a look at the MDS Alliance website . Download and print out the handy templates, which include MDS facts.
Using these templates, you can draw a self-portrait or ask your children, grandchildren or friends to draw your portrait. You can also take a selfie using the MDS cut-out selfie template or with an MDS WAD fact sheet
Take photos of the drawings / selfies and post them and the selfies to Facebook, Twitter and Instagram using #FacesofMDS! and #MDSWAD2020.

You can also get involved without using social media.

Simply follow steps 1-2 above and then send your creations to secretariat@scientificeducationsupport.com following the instructions on the briefing guide (see below)

Go on, it’s time to become part of the collective voice and get involved with the easy to implement MDS WAD activities!

We hope to see many of you involved!

COVID-19 Vaccines and MDS Update 07/01/21

STOP PRESS: A third COVID-19 Vaccine developed by Moderna has just been approved (08/01/2021) by the MHRA in the UK

Oxford University/AstraZeneca Covid-19 vaccine: UK Medicines & Healthcare products Regulatory Agency (MHRA) Approval

Pfizer/BionTech Covid-19 vaccine

Advice from UK MDS Forum of experts

UK MDS Forum guidance:

Download and print this advice.

Which MDS patients should get the Pfizer/BioNtech vaccine?

Which MDS patients should exercise caution regarding the vaccine, and speak to their haematologist before receiving the vaccine?

What remains to be decided?

What will patients need to do post vaccination?

What about the alternatives to the Pfizer/BioNtech vaccine?

Efficacy of the Pfizer/BioNtech vaccine and longer-term thinking?

More information on the different COVID-19 vaccines

Further Information

References:

Latest News

Latest News

Latest News

How does it work?

Items: Jean's Cross Stitches

Items: Molly Viner's "MDS UK by Autumn"

Items: Rebecca Bennett's Animal Paintings

Item: Christine Peel's MDS UK Christmas cards

Imerge (Imetelstat)

Myelo's Hope: Christmas Animation

Latest News

Imetelstat has achieved meaningful and durable transfusion independence in clinical trials

How does Imetelstat work? The science behind it

About the study

Encouraging results from phase II of the study

Authors

Latest News

Cooperation to support a new clinical trial for MDS

Latest News

Latest News

MDS World Awareness Day 2020: FACES OF MDS

Here's our first Face of MDS: the amazing Kate Darby!

Here’s how to take part:

MDSWAD sophie (1)

MDSWAD russell

IMG_0126 (1)

MDSWAD chrisC

25th of October is World Awareness Day

Help us raise public awareness on Myelodysplastic Syndromes!