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Blood cancer patients’ associations call for more data, access to innovative treatments

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Patients diagnosed with haematological cancers suffer from a lack of data and complex access to clinical trials which in turn impact their quality of life, patients’ associations have argued.

Haematological cancers, also known as blood cancers, are complex cancers that develop from blood cells: white blood cells, red blood cells and platelets. There are three main types of blood cancer: leukaemia, myeloma and lymphoma.

According to the European Commission, in 2020, 2.7 million people in the European Union were diagnosed with cancer, and 1.3 million died from the disease. For blood cancers specifically, there were 320,000 new cases in Europe in 2020, according to the World Health Organization (WHO).

Each cancer requires a different treatment and specific care. “Rare cases are normal in haematology,” said Natacha Bolaños, Head of Membership & Alliances, Lymphoma Coalition during an event organised by Euractiv on Tuesday (10 October). 

At the event, panellists identified the lack of available data on blood cancers as a barrier to patient care, early detection of the disease and research into innovative treatments.

“Blood cancers are less tangible, are far less known to the general public,” said Sophie van Tomme, Global Health Value Translation Lead at Sanofi, according to whom a better understanding of the disease would prevent delays in diagnosis. 

If patients are aware of the symptoms of blood cancers, they could recognise them sooner and start the treatment earlier which could potentially save lives. But for that, access to more information and a better understanding of the disease is necessary and so far there is still a lack of knowledge among citizens.

“As for all cancers, if there’s more awareness, people can recognise their symptoms much faster and go to their GP,” she added.

And even when the knowledge is accessible to everyone, there are still gaps to fill to make the most of it.

“We need to have a plan in how to translate knowledge into better research and better clinical practice, including, domains in quality of life and patient experience data,” said Bolaños.

Lack of data in BECA

According to European Commission forecasts, in the absence of decisive action, cancer cases are set to rise by almost 25% by 2035, becoming the leading cause of death in the Union.

To fight cancer in Europe, in February 2021 the European Commission presented Europe’s Beating Cancer Plan, also known as BECA, which is backed by €4 billion of funding, including €1.25 billion from the future EU4Health programme.

“We tried to address the entire cancer control continuum, starting from prevention through early detection, diagnosis, treatment and quality of life of cancer patients,” said Matthias Schuppe, Project Team Leader for Cancer Plan, DG SANTE, European Commission. 

One of the main criticisms of patient associations is the lack of data.

“There are some specific challenges that are not unique to haematology but that are very prominent in haematology and data generation is one of them,” Robin Doeswijk, Head of European Affairs, European Hematology Association (EHA) pointed out. 

In that regard, Europe’s Beating Cancer Plan includes European reference networks (ERNs) which focus specifically on the data available on the disease, which was welcomed by the patients’ association. 

However, according to patient associations, the plan does not sufficiently address the problems associated with blood cancers, either regarding data, patients’ access to care or clinical trials.

Therefore Doeswijk called to not overlook blood cancers when implementing a beating cancer plan. “The burden that comes with blood cancers, both in terms of health impacts and economic cost, is huge,” he stressed.

In addition, the future European Health Data Space (EHDS) also aims to increase the sharing of health data between member states. The data exchanged will include, for example, information on patients or the results of clinical trials carried out in different EU countries.

“The right way to do it is to find the right balance between the needs of data and the protection of the patients,” said Spanish MEP Nicolás González Casares (S&D). 

“Regarding blood cancers, the data is very limited. So the combination of the data across member states is necessary,” Casares stressed, before warning the industry that it should commit to only using the data for this purpose and that they could not resell it. 

Access to clinical trials

Not only data is needed but also more innovative treatments. The currently available treatments to combat blood cancers are complex and cumbersome and severely impair patients’ quality of life.

“We should put the quality of life higher on our agendas and I think it requires a multi-stakeholder approach to do that”, said Sanofi’s van Tomme. 

The treatments for blood cancers are different compared to solid tumours. “There’s not a tumour you can carve out. Radiation is very limited and can only be applied in certain lymphomas,” pointed out van Tomme. 

In other words, patients have a systemic drug treatment, including frequent visits to the hospital for a close follow-up of the disease. 

But, “when you are refractory or you relapse to specific targeted drugs, your next option is a clinical trial”, van Tomme said. 

But patients’ associations highlighted the fact that access to clinical trials and innovation is complex, as they are not available in every EU country, or because they do not particularly interest the pharma industry. 

“It’s also very much about [… ] finding ways to fund academic clinical trials that fill the gaps left for understandable reasons by the industry which prioritizes development in commercially interesting areas,” said Doeswijk. 

However, innovation in blood cancers could also have benefits for other types of cancers. 

“Blood cancers are perfect drivers for innovation. It has been proved already that every new therapy seems to start in haematology. That was the case for cell therapy, for stem cell transplantation, and for monoclonal antibodies,” said Bolaños from the Lymphoma Coalition. 

Patients’ association indicated they were taking part in a consortium that works on developing new tools for policymakers, cost-effectiveness, pricing and reimbursement models for clinical trials. 

[Edited by Giedrė Peseckytė/Nathalie Weatherald]

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