During European Myeloma Day, MPE highlights the importance of improving access to clinical trials

Brussels, 27 September 2024 – Today is European Myeloma Day, a date dedicated to raising awareness of key issues affecting myeloma patients across Europe. This year, Myeloma Patients Europe (MPE) is highlighting the role of clinical trials in advancing myeloma treatments and improving patients Quality of Life (QoL). Despite of the importance of clinical trials in developing new treatments, there are still huge barriers that need to be addressed in order to improve patient access and ensure trials appropriately measure the impact on patient quality of life.

Prof. Dr. Philippe Moreau, Head of Haematology Department, University Hospital of Nantes, France and President of the International Myeloma Society (IMS), stated:

“Within a short time, treatment options for myeloma patients have advanced tremendously, thanks to new developments in clinical trials. The myeloma community now has access to more data from clinical studies than ever before, providing new understandings for treatment and prevention. As more studies develop, it is essential that this progress is communicated to patients. Patients are our key stakeholders and the more access they have to data on advancements in myeloma, the more empowered they will be to make important decisions in managing their disease”.

Prof. Dr. Meral Beksac, Professor of Hematology at Istinye University and Ankara Liv Hospital, in Turkey, said:

“Daratumumab, isatuximab, bortezomib, carfilzomib, lenalidomide or pomalidomide among the many drugs which are in current treatment were once introduced to treatment in clinical trials. We have been highly fortunate to treat myeloma patients as new anti-myeloma drugs keep being developed.”

To help facilitate the search of clinical trials for patients, carers and patient organisations, MPE recently launched the Myeloma and AL amyloidosis European Clinical Trial Navigator, a patient friendly tool to find not only clinical trials but also show inclusion and exclusion criteria, recruitment status and location. The Navigator includes trials for myeloma, monoclonal gammopathy of undetermined significance (MGUS), smouldering multiple myeloma (SMM) and AL amyloidosis in Europe.    

Solène Clavreul, PhD, MPE Head of Medical Education and Scientific Engagement, explained:

“The MPE Myeloma and AL Amyloidosis European Clinical Trial Navigator provides patient friendly information on clinical trials, how they work and are regulated, their potential risks and benefits, clinical trial eligibility criteria, informed consent and what to consider before enrolling in them”.

The Navigator was launched in English but, today, as part of European Myeloma Day, MPE is adding a new language: Finnish. In the coming years, MPE will continue to release additional European languages to provide patients and patient organisations with they information they need in their own language.

Lise-lott Eriksson, President, Myeloma Patients Europe (MPE), explained:

“The MPE Navigator empowers advocacy groups working for myeloma and AL amyloidosis patients by providing an ultimate tool and information needed to guide patients through the complex clinical trial landscape. It ensures patients have access to information on the latest, most relevant trials and increases patients’ chances of finding appropriate and potentially life-saving treatments."

Prof. Dr. Katja Weisel, University Medical Center Hamburg- Eppendorf, Hamburg, Germany, explained:

“In 2024, we see the cure of myeloma becoming real. All of our patients having participated and participating in clinical trials have made this possible. However, myeloma remains a complex disease. The MPE Clinical Trail Navigator helps to find the right trial for the right treatment situation. Let’s move on, together we can make it!”

Access to myeloma clinical trials

Accessing clinical trials provides patients with the best possible treatment in situations where approved therapies are no longer an option. Although access to them varies depending on the country or even the city patients are based, Central and Eastern European (CEE) countries experience the biggest barriers.

The report Addressing access barriers to myeloma clinical trials in Central and Eastern Europe (CEE) reveals that only 6% of the 3,229 global myeloma trials between 2001 and 2020 included patients from CEE countries. Five Central and Eastern European (CEE) countries had fewer than six myeloma clinical trials in this period of time, and seven CEE countries had zero trials. Of the 17 countries in the region that conducted at least one trial, only 11 were EU members, with the Czech Republic, Poland and Russia hosting the most trials.

MPE’s report identifies several barriers to trial access, including EU membership, lack of funding for standard care, inadequate resources for innovative treatments, staffing shortages, excessive bureaucracy and geographical and socio-economic factors affecting patient participation. To address these challenges, MPE provides 27 recommendations aimed at enhancing trial access, covering areas such as regional collaboration, staffing guidelines, supportive policy environments and improved communication with patients.

Read the full report here.

Quality of life in clinical trials

QoL is crucial in all cancers, but it becomes especially important in long-term diseases like myeloma. However, according to the report Quality of Life measurement in myeloma clinical trials, recently developed by MPE in collaboration with Consilium Scientific, QoL data was gathered in less than 50% of European myeloma clinical trials run between 2011 and 2021.

While survival rates in myeloma have improved, patients continue to experience treatment and disease-related symptoms that impact their QoL. The report emphasises the importance of patient-reported outcomes (PROs) and health-related QoL (HRQoL) data, collected through validated questionnaires known as PRO measures (PROMs). The goal of these tools is to fully understand the impact of treatments on patients' daily lives to base decisions not only on the effectiveness of the treatment, but also on the impact it has on patient QoL.

MPE’s research into registered trials and literature from 2011 to 2021 underscores the need for QoL data to inform regulatory and reimbursement decisions, and guide patient-centred care. The report provides targeted recommendations for stakeholders, including the patient community, clinicians, pharmaceutical companies and research institutions, to improve the collection, reporting and use of QoL data in myeloma research and clinical practice. Read the full report here.

European Myeloma Day

During Blood Cancer Awareness Month, which takes place every September, MPE holds European Myeloma Day on 27 September to raise awareness about the most important issues for European myeloma patients, as well as generate data and drive solutions.

This year’s campaign focuses on clinical trial access as one of the most important challenges to address in Europe. European Myeloma Day also gives a voice to patients and a platform to share their clinical trials experience, highlighting the importance of having access to them and the importance of improving patient access to clinical trials throughout Europe.

About myeloma

Myeloma is a rare and incurable cancer of the bone marrow and accounts for approximately 1% of cancers. Approximately 50,000 people in Europe are diagnosed each year with myeloma. Myeloma is a relapsing-remitting cancer: patients will start treatment and may enter a period of remission before reappearance of symptoms. During remission phases, patients will either continue on the treatment that is keeping their myeloma at bay, they may receive a single drug maintenance treatment or undergo observation. Relapses can occur several times during the course of myeloma, when it is again necessary to start or change treatment. The treatment landscape of myeloma is very complex and can include a stem cell transplant and combinations of three to four drugs at a time, such as chemotherapy, immunotherapy, and steroids. Survival rates of myeloma patients have significantly improved over the last decade with the development of new and emerging treatments.

About Myeloma Patients Europe (MPE)

Myeloma Patients Europe (MPE) is an umbrella organisation of myeloma and AL amyloidosis patient groups across Europe. MPE currently has 52 members based in 33 countries. The mission of the organisation is to provide education, information, and support to member groups and to advocate at European, national, and local levels for the best possible research and equal access to treatment and care. To achieve its aims, MPE works directly with members, healthcare professionals, reimbursement authorities, regulators, policy makers, pharmaceutical companies, and the media to ensure all stakeholders collaborate to improve patient outcomes and reduce inequalities across Europe.