Supporting You Remotely: Covid19 has not stopped us!

As you may already know, The Great North Run – one of MDS UK’s biggest annual fundraisers was sadly postponed due to the Covid19 pandemic.

Fortunately, the organisers have devised an excellent way to keep you running and raising essential funds for our life-changing work: The Great Run Solo, a virtual running challenge to keep you moving and raise funds for the NHS. There are weekly and monthly challenge options, as well as challenges for kids. Select the challenge that best fits your fitness & aims and get running. It just has to be done within the allotted 7 or 28 days.

The "Great North Run Solo" launched on 28th June (the birthday of the Great North Run) and “runs” until 13th September - the day the 40th GNR was scheduled.

To complete the challenge and claim a special edition Great North Run Solo medal, runners need to complete 40 runs (minimum) of any distance over the next 78 days.

It costs just £10 to join, and while all entry profits will go to the NHS Charities Together Covid19 Urgent Appeal, you can allocate your raised funds to MDS UK!

We need as many of our wonderful runners, new and old, to take part in this event so we can continue to support MDS patients and their loved ones through Covid and beyond.

The challenge is also an excellent opportunity to soak up some summer rays and with no distance target, you can go at your own pace!

For more information and to enter the challenge, click here.

For any fundraising related queries, please get in touch with us on fundraising@mdspatientsupport.org.uk

For many years, chronic myelomonocytic leukemia (CMML) has been treated as a form of myelodysplastic syndrome (MDS), despite its unique clinical and biological characteristics.

“Everyone recognized that, clearly, there were some patients who had highly proliferative features that weren’t at all typical of MDS, but CMML was still considered to be part of MDS for decades,” Mrinal Patnaik, MBBS, a hematologist at the Mayo Clinic in Rochester, Minnesota, told ASH Clinical News.

Inclusion of CMML under the umbrella of MDS for so long – beginning with the 1976 and 1982 French-American-British MDS classifications – has hindered a deeper understanding of the disease that might have resulted from studying it as a separate entity. There also are no CMML-specific approved drugs.

In recent years, clinicians and researchers have ramped up efforts to clarify the pathogenesis, natural disease progression, and presentation of CMML. ASH Clinical News spoke with Dr. Patnaik and other specialists about these efforts, as well as the challenges of defining uniform response criteria to guide clinical trials of CMML-specific treatments.

What Is CMML?

CMML is a clonal hematopoietic stem cell disorder that frequently progresses to acute myeloid leukemia (AML). It is classified as a rare disease and is estimated to occur in four of every million people in the U.S. each year. It occurs more commonly in men and rarely in young people – 90 percent of the people diagnosed with CMML are age 60 or older.⁽¹⁾

Its incidence may be slightly higher than previously estimated, according to Eric Padron, MD, from the Moffitt Cancer Center in Tampa, Florida, because it often is recognized only when a patient with MDS seeks a second opinion. The disease is an “overlap” syndrome that displays characteristics of both MDS (such as peripheral blood cytopenias) and myeloproliferative neoplasms (MPNs; such as leukocytosis and splenomegaly).

The 2001 World Health Organization (WHO) classification of leukemias and other hematopoietic neoplasms first separated CMML from MDS and created a distinct category of MDS/MPN overlap syndromes. In 2008, the WHO separated CMML via blast proportion into CMML-0 (<5% blasts), CMML-1 (5-9% blasts), and CMML-2 (10-19% blasts). Finally, in 2016, the WHO again revised its classification, including recommending that CMML be classified into two subtypes: proliferative (MPN-CMML) and dysplastic (MDS-CMML) depending on the patient’s white blood cell count.⁽²⁾

Dr. Patnaik said that the WHO’s decision to confirm that CMML should not be put into either MDS or MPN but should stand alone was a positive step forward. In addition, investigators have identified certain genetic mutations such as SRSF2, ASXL1, CBL, SETBP1, and JAK2 that are not exclusive to CMML but are more commonly found in patients with CMML than MDS without proliferative features, which can aid diagnosis.

Expected survival for patients diagnosed with CMML ranges from just a few months to a few years, depending on a variety of risk factors that are not yet well defined.

Fifteen to thirty percent of patients will progress to AML, at which point survival rates drop to 4.7 months without a hematopoietic cell transplantation (HCT) and 14.3 months with an HCT.

“The whole story with CMML is that it is a spectrum in the process of evolution to AML,” said Dr. Patnaik. “So, about 30 percent of all patients with CMML will eventually transform to AML within three to five years. When that happens, survival is very poor.”

One known prognostic factor for survival is CMML subtype. The dysplastic and proliferative subtypes affect patients very differently: Patients with the dysplastic subtype have low blood counts and their natural history and clinical problems related to marrow failure are more similar to patients with MDS; those with the proliferative subtype have high blood counts and often have constitutional symptoms or symptoms related to organomegaly. Patients with proliferative forms of the disease also have shorter survival and a higher risk of transformation to AML.

How Is CMML Treated?

There is only one curative treatment for CMML: allogenic HCT. Unfortunately, only a minority of CMML patients will qualify for the procedure.(³)

Complicating matters further, there are no studies that define when a transplant is the most appropriate option for CMML. Dr. Padron recommends that all patients with high-risk disease who are young and fit enough to be considered transplant candidates should be referred for consideration of an HCT.

Two other treatments are approved for CMML, both hypomethylating agents approved for MDS for which the FDA indication included CMML: azacitidine and decitabine. However, the pivotal trials included few patients with CMML, and response rates are low, especially in proliferative forms of the disease.

“There’s an injustice that has been done to this disease, going back almost a decade,” Dr. Patnaik said, referring to the WHO’s 2008 classification, which introduced the MDS/MPN category of diseases that displayed proliferative and dysplastic characteristics.

“Essentially all the trials that included patients with CMML used disease response criteria designed for MDS,” he explained. “There is clear evidence that [treatment with hypomethylating agents] does not alter the disease biology. In fact, in Europe, if a patient has proliferative CMML, hematologists can’t even use these drugs.”

Instead, doctors tend to treat patients with drugs that target specific symptoms of CMML, such as cytopenias, splenomegaly, and infections with transfusions, blood cell growth factors, and antibiotics. While these can improve patients’ quality of life, Eric Solary, MD, and Raphael Itzykson, MD, wrote in Blood, ”they barely modify disease evolution. … Improved understanding of CMML pathophysiology will hopefully lead to the exploration of novel targets that potentially would be curative.”⁽⁴⁾

How Do We Know if a Treatment Is Working?

The higher prevalence of MDS had a negative effect on CMML clinical trials. “For a long time, the community was so interested in MDS that CMML-specific trials were almost absent,” Dr. Patnaik added. For example, he said, drug studies can enrol 400 patients with MDS, and 10 with CMML.

A major impediment to conducting CMML-specific drug trials has been a lack of uniform response criteria. Without these, it is extremely difficult to prove to regulatory agencies that a drug is working, even if a doctor can tell a patient is doing better. This decreases the likelihood of trials being supported or even considered.

“One of the difficulties in trying to understand how patients with different types of CMML respond to different therapies is that we never had [disease-specific] response criteria at all,” said Michael Savona, MD, a hematologist at Vanderbilt University in Nashville, Tennessee. “When we go to different trial sponsors to try to access new drugs, the most common response we get is, ‘Well, how do you know if it’s working?’ And, to be honest, we don’t have a very good answer.”

Defining response criteria is a challenge because the natural history and prognosis of CMML are poorly understood. There are about 10 prognostic scoring systems that have been proposed for CMML, explained Dr. Padron, adding that “there are no good data telling us when the best timing is for transplant.”

To fill in the knowledge gaps, Dr. Padron and colleagues have launched a project to sequence nearly 1,000 patients with CMML both before and after treatment “to see whether we can confirm what the prognostic mutations are and try to answer that question of which prognostic scoring system we should be using.”

In 2015, Drs. Savona and Padron were part of an international working group that published a proposal of uniform response criteria for CMML, which they hope will be independently validated and refined over time.⁽⁵⁾

“The FDA is quite keen on quality-of-life–associated response elements, and my sense is that if we can improve some of these quality-of-life metrics, specifically how patients are feeling and their spleen size, then that will translate to improved survival,” said Dr. Savona, who was first author on the response criteria paper. The proposal included criteria for measuring improvements in blood counts and reduction in myeloblasts, similar to MDS, but also meaningful reductions in spleen size and clinical symptoms.(5)

At the end of 2018, the European Hematology Association and the European LeukemiaNet released new guidelines for CMML diagnosis and management that update and revise criteria put forth by the MDS International Working Group (IWG) in 2000 and 2006.⁽⁶⁾

“While response to treatment can be evaluated by IWG 2006 criteria in [dysplastic] CMML, recently proposed ad hoc MDS/MPN criteria should be preferably adopted,” the guideline panel wrote. “With respect to pivotal phase III clinical trials, we recommend robust primary endpoints such as overall survival, progression-free survival, or event-free survival, and incorporation of the MDS/MPN criteria as secondary endpoints.”

Where to Next?

While the recently proposed international response criteria have increased interest in studying and developing treatments for CMML, researchers still have a long way to go. The patient population is exceptionally heterogeneous and the disease relatively rare, making clinical validation a challenge.

Studying this rare disease might require new trial designs. Dr. Savona is the principal investigator of the ABNL-MARRO study, an initiative from the MDS/MPN IWG and Vanderbilt University Medical Center in which Drs. Patnaik, Padron, Solary, and Itzykson are also involved.⁽⁷⁾ ABNL-MARRO, or “A Basket study of Novel therapy for untreated MDS/MPN and Relapsed/Refractory Overlap Syndromes,” will enrol patients with MDS/MPN overlap syndromes in the U.S. and several European countries.

The basket design allows new compounds and therapy combinations to be introduced easily among MDS/MPN IWG clinical sites where patients with MDS/MPN are treated. Researchers also will study the biology and pathophysiology of the diseases to identify potential markers of severity, prognosis, and response.

“We’re proud of this study because it is going to open across the U.S. and Europe with the same protocol,” said Dr. Savona. “It’s been the challenge of my career to try to operationalize something across different countries like this.” —By Emma Yasinski

References

1. 1. American Cancer Society. “What Are the Key Statistics About Chronic Myelomonocytic Leukemia?” Accessed April 10, 2019, from https://www.cancer.org/cancer/chronic-myelomonocytic-leukemia/about/key-statistics.html.
   2. Arber DA, Orazi A, Hasserjian R, et al. The 2016 revision to the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia. Blood. 2016;127:2391-405.
   3. Deeg HJ, Sandmaier BM. Who is fit for allogeneic transplantation? Blood. 2010;116:4762-70.
   4. Solary E, Itzykson R. How I treat chronic myelomonocytic leukemia. Blood. 2017;130:126-36.
   5. Savona MR, Malcovati L, Komrokji R, et al. An international consortium proposal of uniform response criteria for myelodysplastic/myeloproliferative neoplasms (MDS/MPN) in adults. Blood. 2015;125:1857-65.
   6. Itzykson R, Fenaux P, Bowen D, et al. Diagnosis and treatment of chronic myelomonocytic leukemias in adults. HemaSphere. 2018;2:e150.
   7. ABNL MARRO. Accessed April 10, 2019, from https://abnlmarro.org/.

New diagnoses of IPSS INT-2/High patients

• Almost all patients will become neutropenic during the first 1-3 cycles of azacitidine therapy
• Therefore consider whether a delay in initiating azacitidine could be acceptable to the patient and clinician. In the AZA-001 registration study, only 52% patients were treated within one year of original diagnosis (which for some, may have been lower-risk). Patients’ management should be assessed by the MDT on an individual basis and then discussed with the patient. Delay may be acceptable for the following groups but this is not an exhaustive list:
  • Patients with relatively well preserved blood counts (e.g. neutrophils >1)
  • Patients with stable blood counts for the preceding 3 months and neutrophils > 1
  • Patients with lower blast count (<10%)
  • Patients lacking good-risk ‘AML’ genetic / genomic characteristics
• If azacitidine therapy deemed immediately necessary, consider using G-CSF and / or antibiotic prophylaxis through cycles 1 & 2 in order to try to prevent hospitalisation with neutropenic sepsis.
  • Where feasible and subject to local guidelines for home administration of azacitidine, consider alternative models of care to minimise hospital attendance for azacitidine injections
  • Blood count monitoring should not be reduced, continuing per local guidelines, but samples taken in the patient’s home where possible and attendance to hospital following, based on local blood product transfusion policy.

Patients already on azacitidine

• Beyond cycle 3, if patients are deemed to be having clinical benefit, consider increasing interval between cycles to 6 weeks, or continuing 4-weekly but reduce to 5 days azacitidine per cycle. Note that there is no trial evidence for a switch from 4-weekly to 6-weekly intervals, but there is some (under-powered) randomised trial evidence that 5-day azacitidine cycles may be less efficacious than 7-day cycles.

We have received many calls from MDS patients and members, reporting that they had not received a Highly Vulnerable letter.

Some patients were even told by their GP’s that no isolation or shielding was necessary for MDS, as this disease was not on the official NHS England list of Extremely Vulnerable people.

MDS UK has been reporting these facts to NHS England directly, via the very helpful weekly conference calls set up by NHS England with all cancer charities, to gain feedback and ensure no issues are missed.

We thank Professor Peter Johnson and David Fitzgerald, who are running these conference calls.

In their most recent update from the 7th May 2020, NHS England have now added MDS (Myelodysplastic Syndromes) specifically, to the government list of highly vulnerable people who should be shielding, isolating – and be receiving an official Vulnerable Letter.

The document below is a direct request from NHS England to Cancer Alliance Leadership teams, to ensure all relevant patients are added to the official list of Vulnerable people, and be sent the letter to anyone who has not yet received one.

The image below is the new revised list of shielding groups, which includes MDS explicitly, to avoid any possible doubt that MDS patients must shield, isolate and are entitled to all government support.

This means:

Shopping Online

This will hopefully make it easier to get a preferential online shopping slot with supermarkets.

Alternatively, you can also make use of the smartphone app “Next door” which connects you to many people in your neighbourhood. Many people there are offering to help with shopping and various errands.
Or – NHS staff can request the NHS volunteers to assist you, via the GoodSam network. Any NHS staff can make such referrals to GoodSam for you, for shopping, errands, delivery of medication etc

Employment rights, return to work requests

This will also help clarify the situation for employers potentially requesting their employee with MDS to return to work as lockdown is starting to be eased.

If the work environment is not making it possible to isolate from other employees, or is not deemed safe enough, or if travel to work requires public transport for example, MDS patients can use this Vulnerable Letter to explain they are unable to return to normal work as early as non-vulnerable employees.

Patients and employers can contact HSE Health and Safety Executive (Sarah Albon) in case clarifications or assistance is needed in these circumstances.

[Mohty] Welcome to Yolande, thank you so much for agreeing to participate in this webinar of the International Academy for Clinical Hematology. Thank you. I structured this discussion this evening around three main questions.

Before we talk about the impact of this epidemic or pandemic on our patients, on their families and on medical staff, I would like you to talk a little bit about the general impact that you observed in terms of preparation and mobilization.

Many people have said that we are in a state of war, others have said it's more of a test of humanity. Personally, I think it's a mixture of a lot of things. What is your opinion, your observation now, with a few weeks of hindsight into this epidemic?

[Arnault] So first of all, thank you for welcoming me to this session, I am very honoured, and maybe we can, in any case, what I can say right now is that I think we need to stay humble about everything that is happening around us. In the face of this tsunami which we were absolutely not prepared for. Nobody was.

There is different information and news about confinement extensions, day after day, week after week, which really creates an atmosphere of uncertainty which is generating anxiety and even anguish in many of us, whether we're caregivers, or the sick.

So it's very, very difficult, there is a real challenge around this pandemic, and this situation in which we are immersed. It is a real challenge because, at once, we need to take all the protective measures that everyone knows: containment, barriers, etc etc, changes in our procedures for caring for our patients in hospitals, but also, as you said, we are at war.

Yes, we are at war, but we also must not forget all the human aspects; even psychological, that this health crisis is causing for everyone.

So it's a real challenge to make sure that we can come out of this crisis almost unscathed, because I think people are going to be really impacted by this, even afterwards.

I dare not even imagine what this pandemic would have been, I don't know, 30 or 40 years ago when all that didn't exist. So it's a real challenge for us in all of that.

[Mohty] So when we discussed it a bit by phone - since naturally due to confinement we can only discuss by phone or online - several times you used the terms 'new practices' of preparation; you just mentioned the challenges of things that are completely new.

I'm perhaps reluctant to use strong terms, but are we at the stage already where we have to mourn our past lifestyles? Or are we are not there yet?

[Arnault] I think we will have to mourn our past modalities of life. That's for sure. I think we will have to learn to create new practices, new forms of relationships...for example in hospitals, tele-consultations are naturally multiplying because we try to avoid people coming to the hospital. I believe that these are practices which will stay.

[Mohty] So to my question, you raise the tele-consultation, and in fact today we realize that we can do more than 80 or 90% of our consultations by tele-consultation, there is no need to move the sick.

In your opinion, in any case in terms of a purely technical and medical plan, is that a good or a bad development?

[Arnault] I want to say both. It's a good evolution because that can allow, I don't know, a speed of exchanges and decisions. But it's also worse because patients - our patients – have the need to be in direct contact with doctors who they see as their referring doctor.

Tele-consultation, while allowing speed, a certain efficiency, is also a kind of dehumanization of relationships. And that I think is really important to keep in mind.

I think it would be extremely harmful if we rush en masse, for example, into tele-consultation. Once again, patients have a real need to have a real relationship with their doctor. And I know that can be time consuming. I know that a doctor can't spend an entire hour with a patient etc etc. But he still needs real relationship.

For the patient it's a form of support, a benchmark, a form of insurance, of reassurance. The patients we follow in onco-hematology, who are extremely fragile, sick, in confinement which they're already familiar with by the way. Imagine we could only do - I don't think that's the goal - but that we could only do tele-consultations, that would be really damaging.

[Mohty] So we have already started talking about the sick, about their families, about the impact. I imagine that for several weeks many of the sick, those around them, their families, but also I imagine nurses, caregivers, other hospital staff at all levels - because it's an extremely robust chain and you need to ensure continuity of care according to the rules of the art.

The impact on patients: "The usual anxiety is amplified by COVID"

So the patients or people who reach out to you, whether they are professional or family or patients, what are they telling you? What questions are they asking you? What are the terms or phrases that come up often?

[Arnault] So what is certain given the flow of information, because we all have this over-saturation of information on covid; we turn on the radios, we hear about covid, we turn on the TV, we hear about covid. Even between us, we speak about covid. In families, when we work out, everyone is talking about covid. So we're really submerged by covid, by this sanitary crisis. So of course patients are talking about it.

Many patients tell me they've stopped watching the news because it gives them anxiety.

And suddenly what gives them anxiety when they're hospitalized is the prospect of release, for example. You know already when we decide on the release of a patient who was hospitalized for weeks after a transplant, after a leukaemia treatment, and to all of a sudden find themselves at home - these patients sometimes have the feeling of fear, of abandonment. And so now it's even more amplified by covid. If I get out – will I get infected? Do I risk going on resuscitation? I have a patient who told me 'I want to stay,' 'I want to stay here where I'm taken care of. Here there is a team of 24 people around the clock around me. At home what will become of me?'

[Mohty] I agree, and we share the same experience. We actually saw reluctant patients who tell themselves 'I'm in a cocoon at the hospital, in a protected unit'.

But we also have the case, I got a phone call from a patient who politely apologized because he does not want to come back for his consolidation therapy for acute leukemia, because as he explained to me in a rational manner, it's heavy chemotherapy, it will weaken his immune system, and that maybe we could give ourselves a bit of time before launching into this heavy chemotherapy. And it's true I was a bit baffled with the idea as you can have a loss of luck if you don't do timely chemotherapy for acute leukemia. At the same time, his explanation was very rational and justified, because these are patients effectively at high risk for covid-19.

[Arnault] It's true that it's legitimate but that's what we have also noted in our institute: the number of patients who no longer come to appointments. Appointments for scans that are cancelled, even hospitalizations cancelled because patients are scared of coming to the hospital, because we've also always told them that the hospital is also a place of infections. To protect yourself when you come to the hospital, wear a mask etc. Things that they do regularly and that are standard in their pathology and that we've imposed upon them.

And so many patients hesitate in maintaining the continuity of treatments. And that is a danger.

I think we must communicate a lot more about that, and by the way we are starting to hear it a bit everywhere. At first everything was guided towards covid, the necessity of confinement, of keeping distance, etc. And suddenly patients holed up at home and didn't leave, which can be really damaging for patients. Because I think that when someone has acute leukemia, and has to have induction therapy, they must come to the hospital. It's not at home that it's going to be treated. So it's very serious.

[Mohty] So the patient I spoke to you about, if I had passed you the phone what would you have told him? To convince him in one way or another.

[Arnault] I would have told him that of course I understand his anxiety, that of course in the current situation these are legitimate thoughts and concerns, but that we also must know what the priorities are. It's very important to calm anxieties, but also to bring patients and those accompanying them into the reality of things. Meaning, calming a patient's anxieties doesn't necessarily mean doing what he wants.

It's also, I want to say – I'm a bit like this - the one who wakes them up, to say: attention. Your life is at stake. And in the balance of risk and reward – of should I go to the hospital or stay at home- one must really think about it. And that's something that really needs to be passed on to the patient. That's what I would have said. Because I am a bit direct. But I think sometimes it's important to be direct with patients.

The impact on caregivers: "Being a hero is something very heavy to carry"

[Mohty] But I think that's an important philosophy,I'm not a psychologist, but based on purely medical reasoning, for me it's important that the fear of covid-19 doesn't cause terrible damage to the natural progression of haematological illnesses, in terms of relapse or recurrence and the like. So that's the sick patients, but I imagine that the caregivers solicit your advice also.

What do they say, what do they think...me for example, I won't hide from you, I regularly have caregivers who I pass in the hallways, and the biggest fear they have is bringing the virus home to their families and kids. What do they tell you?

[Arnault] The same thing. The caregivers... I first want to salute them. These are incredible teams. All of them, whatever their place or role they're taking care of things, there constantly in service, they relay between them, if one is tired the other takes over, there's really an absolutely incredible solidarity from the caregivers, among them and the teams.

[Mohty] I completely agree with you and I wish to underline also that it's true, in French we have these semantics where we talk about caregivers, and the reflex is to say caregivers are basically the nurse, the doctor, the assistant... but in my mind, and I hope you share this, caregivers are actually all the players in the hospital. That includes the secretaries, the administrative staff which ensure consistent functioning, that includes the caretaker at the entrance to the hospital who plays a remarkable role in the regulation of entrances and exits of personnel, the cleaning staff, logistics staff, the people in the kitchen who make sure the staff has meals, the staff at the nursery, it really includes everyone.

[Arnault]. Everyone. Technical staff. Everyone, everyone. And it's sure that all these people you mentioned are actually on the front line, and they are overused in this unique period of pandemic. They continue to carry out their missions with a lot of courage and selflessness in conditions which can be sometimes...we haven't seen it in our centres… but conditions I saw on TV, and it absolutely shocked me; these field hospitals in the countryside, hastily mounted, these centres for resuscitation overflowing with patients.

They're also working in very particular conditions. In our departments of oncology, haematology and transplant services we were already very prepared for wearing masks etc, but now it's more so, even if we're prepared for it, not for the pandemic but for the protection of the sick from infections, it's really taking on the look of a bunker.

It's really also the barring of families from coming. There are no more families in the departments, now, there are only caregivers, only us. Whether it be nurses, nurses aides, doctors, the precautionary measures are multiplied, more than before, and repeated one thousand times in a day.

At the same time we - the doctors, nurses, aides - continue to provide treatments, but also to deal with, in a certain way, patients in terms of their morale. To support their psychological state since they're cut off from the people close to them. To be there to greet and contain the fears that are of course multiplied, the anxieties of patients.

So they are really used, overused even, and I'd like to add for the caregivers – of course it's very beautiful, this mobilization at 8pm every evening to show thanks, not only for caregivers but also for all the people who work for the community, the supermarket cashiers, the workers who continue to supply us, these people are certainly heroes.

But I want to say that being a hero is something very heavy to carry. Meaning when we're heroes, we don't complain, if we have fears or we're not well, we shouldn't show it, because we are heroes. And I think that long term that risks having an impact, you know what I mean?

The future after COVID: "We advance day after day, week after week"

[Mohty] Actually you're giving me a good transition to the last part of this interview that I summarised on this slide: now, what is next? What's next? Because colleagues who are virologists, epidemiologists specialised in public health, and we want to believe them that an epidemic ends eventually, and gladly so because otherwise it's catastrophic, and once all of this stops we will try to find a different rhythm from this state of emergency that you describe, from this constant mobilisation, where we don't have the right to complain, we just do the job, as said.

What's next, what do you anticipate we have to prepare, or not? Or eventually will everything go back into place easily?

[Arnault] It's complicated because we know when this began, and we don't yet know when it will end. You know it's a bit like our sick patients. They know when the illness began, but they don't know when it's going to end. We are really immersed in this uncertainty it's hard to project the future, like our patients. Like I said the beginning of my comments, we're advancing without knowing what's ahead.

We advance day after day, week after week. But when it comes to this health crisis I think we will have to really be very attentive to the impact afterwards, as I said before. That's to say that some people may be grappling with what's called post-traumatic stress. Having given so much, having held on so long. A bit like our patients who during their illness, advance from chemo to chemo, step by step. And who after, I want to say, allow themselves to finally let go, and break down. There's a level of breakdown.

And the cases of post-traumatic stress are at risk of multiplying. So it will be necessary to identify these patients, and the risk for certain patients who are more fragile that others. We are not equal when it comes to this, our fragilities, psychologies, life histories. So we need to really really be attentive to these potentially traumatising elements of this crisis, because many people will come out completely fragile on the psychological side, family side, but also the economic. Because there is also this aspect of things. We talk about recession, before it was just whispers, and now is louder when we hear news. Not only do we worry about the illness, but also for our economic future. How will I pay my credit card? Will I still have work? etc etc. So I think the psychologists, social workers are going to have their work cut out for them.

[Mohty] So these are the negative aspects, it's true, I believe this is a real disaster on different levels.

But I still want to be optimistic, is there something good that we can extract from this episode?

[Arnault] Already at the individual level, I said earlier there are people who are extremely fragile, and then there are people who have this capacity for - it's a term that everyone now knows of – resilience.

This capacity, you know this ability... in positive psychology they would talk about post-traumatic growth, it's another term that refers to resilience, the same concept. Meaning the same concept of this ability that some people have to get up from a situation that's difficult, impactful, traumatising.

The ability of certain people to create, to recreate new functions, to tap into resources in themselves, but also knowing how to use outside help to rebuild. And that really I believe in. The number of patients who are capable of that.Or if they're not immediately capable of it, psychologists, caregivers etc are there to help them move towards this. That's on an individual level.

On a global level, of course this crisis will bring us, I hope, to think of the world a little bit differently. To know how to prioritise what is important for us. Is what's important to us accumulating things in our homes? Or can we be satisfied with less, but better?

And I think confinement, this challenge we're all sharing, will make us think about that, and maybe we'll envision the post-covid period differently.

I wholeheartedly hope it happens like this and that we can create new practices, new solidarities, because we really need it.

This period which is eminently agonising and uncertain, in terms of duration, in terms of temporality. I believe that consciences are going to wake up a bit, I believe that. I think maybe we'll tackle things a bit differently and that we will not be taken over by our life before so easily, I think. I believe. We have to believe it.

[Mohty] One last word Yolande of conclusions for everyone watching us today, whether they be family, caregivers, doctors, industry players. Because the IACH has an extremely large and varied audience in over 100 different countries around the world.

If you must give us a few keywords, how can they get through this ordeal?

Donor dropouts and limits on how many people are allowed to occupy a building or facility amid the crisis are just two of the reasons for these forced cancellations. These factors have raised tremendous concerns among experts regarding the blood stocks for future surgical operations, cancer and blood disease patients. Patients with chronic haematological diseases are often in need of regular blood transfusions, specifically red blood cells, platelets and sometimes plasma.

The most significant risk to blood stocks posed by COVID-19 is a lack of availability due to this decrease in donations. The situation becomes worse as blood products have a strict use-by date. It would not be wise to wait until the shelves of the blood banks are empty. Fast and effective action is needed immediately.

Healthy volunteers are urgently requested to donate blood NOW and throughout the next few months, for the sake of patients dependent on blood transfusions due to surgery or blood diseases.

What can you do?

Healthy individuals should schedule an appointment to donate blood during the Corona pandemic to ensure that sufficient supplies are available.

Attending a blood donation drive is allowed as an essential event, even if the country is under lock-down.

Don’t be put off if the next slot is not available till April, June or July. Donors will be required for many months to come. Book it please.

Imagine highly anaemic, weak and exhausted patients going to a hospital to receive a blood transfusion – in order to stay alive. But – being turned away because there is no blood left.

It is as dramatic as it sounds, those patients will potentially die of multiple organ failure within days or a  few weeks.

Two statements for all Corona-affected countries, regions and hospitals:

“Right now, the Red Cross is distributing blood donations faster than they are coming in,” Paul Sullivan, Senior Vice-President of the American Red Cross, told ABC News on March,17th.

Dr. Chris Lough, Vice-President of Medical Services for LifeSouth in the U.S., said, “If we continue to see blood drives cancel, we are going to reach a level of inventory of which we haven’t seen in the past.”

MDS patients – please ask your healthy relatives and friends to become or remain a volunteer donor. Please spread the word about the urgent need to help stop the threat of low blood stocks worldwide

As a person affected by the blood cancer MDS myself and in regular need of red blood cells, I am very grateful that many of my friends and my sons immediately went to donate blood, when I made them aware of the problem. If I had not told them – they would not have realised. Please talk about it around you.

Bergit Korschan-Kuhle, MDS-Alliance Steering Committee Member, Germany; MDS-Patient,
and – recipient of over 660 blood transfusions since 2008