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Why myeloma drug access is currently a ‘lottery’

hus quality of life couple
hus quality of life couple

Rosemarie Finley

CEO, Myeloma UK

Empowering GPs to better recognise myeloma risk indicators, and making access to treatment equal, could lead to earlier diagnoses and a better quality of life for patients.

Myeloma is one of the rarest forms of cancer, yet it carries the sixth highest death rate of them all.

Just 5,700 myeloma cases are recorded in the UK each year. Its rarity means early diagnoses can be difficult, yet early diagnosis is vital for improving patient outcomes and quality of life.

Rosemarie Finley believes educating GPs to spot warning signs earlier, and improving diagnostics, are a key focus for research.

“We need a flagging system for GPs. Something that will alert them to consider myeloma if a patient shows specific symptoms.” Symptoms of myeloma are normally vague to start with (anaemia, fatigue, back pain, musculoskeletal non-specific pain, bruising, weight loss), which makes it tricky to detect or even suspect myeloma in the first place. Once there are more specific, yet more serious symptoms (such as bone disease symptoms, fractures and renal failure) – usually discovered via A&E route –  the patient can have a much worse prognosis. It is a challenge to educate GPs and introduce a ‘flagging system’ of the right kind exactly, because key symptoms are so vague.

Better diagnostics would also mean treatments could be far more focused and cost-effective in the long run, ending the ‘pick and mix’ approach often employed while correct diagnosis is achieved.

Where you live impacts your quality of care

In the UK, the quality of care for myeloma patients is directly linked to where they live, something Finley says must change.

“Eligibility for drugs trials is based on your location, and equality of access to drugs simply has to happen,” Finley said.

Finley did cite the vast improvement in treatment over the last 10–15 years. Treating patients with MGUS (monoclonal gammopathy of undetermined significance – a pre-condition of myeloma) is an important consideration for the future, so we are treating people sooner to have improved outcomes.

Myeloma UK focuses heavily on improving public and professional awareness of the disease, as well as the support networks available to people affected by myeloma.

“People often confuse it with the skin cancer, ‘melanoma’. Making people aware that myeloma is a blood cancer is as important as improving awareness of common symptoms,” Finley said. 

“There are many support networks available, with over one hundred support groups for myeloma and other related diseases, where people can meet and learn from others. We are very involved in health research and working with partners such as the Institute of Cancer Research and the University of Leeds, to advance the discovery and development of new treatments. You can find out more about our research work at myeloma.org.uk.”

Myeloma UK at the Chelsea Flower Show

The sculpture (below) represents the role of the carer – a person who is often crucial in ensuring that the patient remains the main focus of a myeloma diagnosis.

By blowing seeds onto the fertile soil below, the sculpture represents new treatment in myeloma, and as a sign of hope and growth.

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