Clinical trials are a lifeline, Myeloma UK tells Parliament

Clinical trials are a lifeline for many myeloma patients and should be considered an essential part of core cancer services, not an added extra, Myeloma UK has told Parliament.

Patient advocacy news // 13th September 2021

Earlier this month, we submitted evidence to the ‘Clearing the Backlog caused by the Pandemic’ inquiry. In our submission, we have strongly urged the Health and Social Care Committee (HSCC) to put patients’ needs first and to invest in the necessary resources to get myeloma patient care back to pre-pandemic levels. This included a call for investment in clinical research into non-COVID related conditions.

For myeloma patients not or no longer responding to existing treatments, joining a clinical trial is often their best or only option and, as such, critical to helping them live well with the disease for as long as possible.

Yet, 10 per cent of all clinical trials in the UK are still paused due to the pandemic and three per cent have had to be stopped or cancelled entirely. The significant drop in new studies has also left many patients without the option to take part in new clinical research. Meanwhile, COVID-19 research continues to receive priority.

The focus on COVID-19 clinical research is also causing inequality in access to trials as the clinical research staff and resources at some hospitals are not available for other non-COVID research projects.

The inquiry was launched by Parliament to assess the level of pent-up demand for key healthcare services and to consider whether fundamental changes to these services and their delivery will be required to manage the backlog of cases caused by the coronavirus.

MPs will examine the levels of funding, capacity, organisation and leadership needed to address the current backlog for non-COVID health services and discuss the growing concerns that these issues are likely to continue in the longer term.

Chief Executive, Laura Kerby, said:

“Participation in a clinical trial can be the factor that changes a patient’s outcomes, particularly for those myeloma patients who are not responding to existing treatments. Whilst we appreciate that research has had to pivot towards COVID-19, myeloma research can’t wait. We’re calling on the Government to get myeloma research back to pre-pandemic levels at a minimum, and not let vital work on this complex and highly individual blood cancer fall behind.”

Myeloma UK’s response to the HSCC inquiry raised serious concerns about the significant drop in and delays to high-dose therapy and stem cell transplantation and the general disruption to supportive treatments for myeloma patients in the early months of the COVID-19 pandemic.

We have also called on the Government to address the impact of COVID-19 on urgent referrals for suspected cancer, the full extent of which may not be known for months or even years to come.