35.000 people attended the European Society for Medical Oncology (ESMO) Annual Congress, held from 20 to 24 October in Madrid, Spain, where the latest data in oncology research and development was presented. Along with several updates, mostly in solid tumours, different advocacy topics were discussed as part of the Patient Advocacy Track. Myeloma Patients Europe (MPE) was represented by Kate Morgan, MPE Co-Chief Executive Officer, and Lise-lott Eriksson, MPE president who participated in one of the most important sessions of the ESMO Patient Advocacy Track: “How to improve access to medicines through patient engagement?”

In myeloma there are currently 31 EMA licensed medicines and medicine combinations which MPE mapped in the Myeloma Access Atlas. “Many countries do really well in terms of access like Germany, France and Austria, and other countries, like non-EU Balkan countries, are over 10 years behind the standard of care,” stated Kate.

The data of the Myeloma Access Atlas shows huge inequalities and big access challenges in Europe, something that has been shown also in terms of access to clinical trials. According to the MPE report Addressing access barriers to myeloma clinical trials in Central and Eastern Europe (CEE), only 6% of the 3,229 worldwide myeloma trials included patients from CEE countries.

“What we need to do as an advocacy community is to generate data to understand what the challenges are, because in order to address them, we need to know what the situation is on the ground. We strongly believe in evidence-based patient advocacy and the MPE Myeloma Access Atlas is a good example of it,” said Kate.

Watch the whole interview here.

To address these inequalities, better collaboration with the national regulatory and HTA bodies is needed. “I believe patient involvement in decision-making is crucial. Without access, there is actually no innovation, but we need a structured form of collaboration between patient organisations and regulators on this matter,” commented MPE president Lise-Lott. 

As Lise-Lott explained during the session, Blodcancerförbundet Sweden, the MPE member in Sweden, has pushed for a more structured way to participate in regulatory decision-making. “We organised round table discussions with all stakeholders (regulatory bodies, clinicians, politicians, pharmaceutical companies) to make them understand patient involvement is really necessary. We see now that stakeholders are more aware of the need of a more structured approach. There is only one patient in the TLV board –the body who determines which pharmaceutical products, care-related medical devices and dental care procedures shall be subsidised by the country–  and she is supposed to give feedback about all medicines in all areas. Nobody can be that educated. It is necessary that the patient advising on the decision changes depending on the area they are talking about,” explained Lise-Lott.

Watch the whole interview here.

Caregivers’ needs

Caregivers are not usually on the agenda of an oncology scientific meeting. This time, the ESMO Patient Advocacy Track discussed the caregivers’ needs from different perspectives. Around 20% of the population (about 100 million people) can be considered informal caregivers in Europe. Informal carers are described as a person who provides care, usually unpaid, to someone with a chronic disease, a disability or any other long-lasting care needs outside a professional or formal framework. “They contribute an enormous amount to our healthcare systems, they are crucial in our economy. However, the awareness of caregivers is quite limited. You don’t prepare to be a caregiver; it happens overnight and it comes with certain challenges,” explained Bettina Ryll, Founder of Melanoma Patient Network Europe.

Understanding the best way of managing medication and treatment side effects, or simply physical activities like lifting the patient, are some challenges. Those come along with a significant emotional and psychological burden and a huge impact on the caregiver’s health, employment and social life.

“One of the speakers showed today that the level of stress and distress were higher in the caregivers than the patients themselves. There is a high unmet need, and we just don’t look at it,” stated Bettina.

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Digitalisation in the patient journey

Digitalisation is a fact in all areas of life, but especially in health. In the last few years, thousands of different solutions have appeared either to measure health parameters, to gather feedback from the patient or to have medical check-ups without being physically at the hospital, avoiding the risk of infection.

Even though digitalisation brings huge benefits, there is also a broad range of challenges to overcome to make digitalisation more effective. “Digitalisation is something we can’t avoid, so we need to think about it as our partner, a helper, and not something that comes between the doctor and the patient. Patients still want the personal human touch, and this is something we should try to keep,” said Tanja Spanic, chair of the ESMO Patient Advocates Working Group (PAWG) and president of Europa Donna Slovenia.

More and more digital solutions are available nowadays in healthcare, either applications, apps for smartphones or smartwatches or some small digital devices that can help patients to remind them to take their medicines, register side effects, monitor heart rate or the intensity of physical activity, among others. “Maybe there are already too many, and how to filter and choose the right one, even for healthcare professionals, is a challenge. Bringing our experiences together and avoiding reinventing the apps all the time could help to reduce the number of digital solutions. It is better to choose a solution that the patient or healthcare professionals communities already developed and adapt to other specific cases,” Tanja commented.

Watch the complete interview here.