Blood cancer patients call for faster drug access

Patients with incurable blood cancer say they fear they will die if new treatments are not made available more quickly.

Louise Martinez from Berkshire has been living with myeloma for 5 years. She has joined a national campaign calling for more drugs to be made available.

The 50-year-old has been on four rounds of treatment and is worried that the best new drugs won't be available for her when she needs them. The condition can damage bones, weaken the immune system and harm organs.

A Department of Health and Social Care spokesperson said: "Every patient with blood cancer deserves fast access to the best possible treatment, and we are determined to make that a reality."

"It is a relapsing cancer so they treat us but inevitably the treatment stops working and we need more treatment," said Martinez.

As part of Blood Cancer Awareness Month the former hairdresser who lives near Newbury is campaigning for more drugs to be available and for that to happen more quickly.

"I've seen and I've known people die while waiting for more treatment options, so inevitably if we run out of treatment the only option is dying – that's it. So we need more treatment options, they need to be approved faster."

Myeloma affects over 35,000 people in the UK. While it is incurable, it is treatable in the majority of cases. BBC broadcaster Lauren Laverne revealed her diagnosis in July.

According to the charity Myeloma UK, if Martinez lived in Germany, she would have a third more treatments available. It's calling for change.

Myeloma UK's Closer to a Cure report says people with myeloma in the UK are missing out on life-saving treatments already available in some European countries because of a slow and complex drug-approval system.

Caroline Donoghue, access manager at Myeloma UK, said: "This report needs to be a wake-up call for everyone involved in bringing new treatments into the NHS.

"People with myeloma in the UK deserve better, and they certainly deserve the same chance to keep their cancer under control as someone living in Germany."

"The system as it stands is slow and bogged down by red tape. Pharmaceutical companies, the government, National Institute for Health and Care Excellence (NICE) and the NHS, among others, all have conflicting goals, which means patient need is pushed down the list of priorities.

"Nothing will change unless we shift the focus to what people want: longer lives, a better quality of life and more treatment choices."

Treatment options in the UK have significantly improved in recent years and patients are living longer.

At University Hospital Southampton (UHS) work on a drug trial to support patients with high risk myeloma has shown positive results.

Dr Mathew Jenner is a consultant haematologist at UHS: "Its fair to say we are in a very different position to where we were five years ago, where we typically for each line of therapy we had one choice and it was the only choice we could give whether it was the best choice for that patient."

"We understand there is a process that needs to be gone through and it's very important there is a thorough evaluation of the benefits of any treatments but we know that sometimes particularly around the negotiations around cost do end up taking some time and that can delay some of those approvals."

Martinez is currently taking a break from treatment and doing really well. That means she's got the energy to fight for better options for her and the thousands of other patients living with incurable blood cancer.

"I feel the system in the UK is very dehumanised. It feels as a patient that its all about money and it just doesn't make sense to me that the consequence of these decisions is actually life and death."

Myeloma UK has shared its report with the Government, NICE, the pharmaceutical industry and anyone involved in getting treatments approved.

Over the coming months the charity says it will meet with key decision-makers to discuss how to take the reports' recommendations forward and give patients faster and fairer access to treatment in the UK.

A NICE spokesperson said: "Over the last five years, NICE has approved 90% of cancer treatments it has appraised, rising to 94% in 2025/26, demonstrating our commitment to helping patients access effective new treatments as quickly as possible.

"We have made significant changes to speed up patient access to innovative new medicines while ensuring decisions remain grounded in robust evidence and fair value for the NHS.

"For people with multiple myeloma, earlier access has been supported through the Cancer Drugs Fund with around 21,000 people treated since 2016, around one in six patients helped by the Fund.

"NICE is also using simpler, faster routes for some treatments, while keeping the same high standards. For some medicines, this has already cut the time taken to produce guidance by up to 20 weeks."

This month the first personalised myeloma treatment was approved on the NHS.

It has been described by Myeloma UK as a 'game-changer.' DVRD is tailored to each patient's depth of response. It combines daratumumab (Darzalex®), bortezomib (Velcade®), lenalidomide (Revlimid®) and dexamethasone and is aimed at newly-diagnosed patients who are eligible for a stem cell transplant.

Around 1,900 people could benefit from the new treatment each year.

According to the latest trial data, 84% of people on DVRD were still myeloma-free after four years.

A Department of Health and Social Care spokesperson said:

"Every patient with blood cancer deserves fast access to the best possible treatment, and we are determined to make that a reality.

"Earlier this year, two life-saving treatments for blood cancers in infants and young children were approved by NHS England.

"Our National Cancer Plan will look at how we can speed up access to effective treatments and ensure the whole system, from approval to rollout in hospitals, works faster and more effectively for patients."

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