Closer to a Cure: our roadmap to unlock faster and fairer access to treatments

A landmark new report from Myeloma UK sets out the five urgent steps needed by government, industry and policy-makers to ensure everyone can access the treatments they need, when they need them.

Built on three decades of insight, expertise and involvement in every single myeloma treatment appraisal the Closer to a Cure report acts as a roadmap to end the geographical inequalities, remove the barriers preventing people from receiving the most effective drugs and put treatment in the hands of patients faster.

While myeloma treatment has improved over the last 30 years, getting drugs approved remains a slow and uneven process.

People with myeloma still have to contend with unfair restrictions on treatment choice, and the care they receive can vary widely depending on where they live. Restrictions, discrepancies in care and delays in access aren’t just frustrating, they can shorten lives and have a huge impact on quality of life.

A wake-up call to decision-makers, the Closer to a Cure report lays out five key steps to speed up and improve access to treatments.

It also urges the Government, the NHS, drug-approval body NICE, the pharmaceutical industry, among others to come together and work toward a single goal: getting the best possible treatments to patients as quickly and as fairly as possible.

Caroline Donoghue, Access Manager at Myeloma UK, said:

“One thing is absolutely clear: people living with myeloma do not have time to wait, and they should not be asked to settle for ‘good enough’. Too many people still face delays to get life-saving treatment, and find their choices are limited by where they live or unfair rules on when a drug can be prescribed.

Closer to a Cure is a roadmap for everyone involved in bringing treatment into the NHS, from the Government and drug-approval body NICE to the pharmaceutical industry.

Nothing will change unless we all work together and focus on what people want: longer lives, a better quality of life and more treatment choices.

We firmly believe that these problems can be solved. Together, we can build a system that gives people faster, fairer access to the treatments they so urgently need, but we must act now.”

Each of the five steps laid out in the report pinpoints a specific problem and addresses what needs to be done to break down barriers and ensure patients don’t fall through the net.

They are:

STEP 1:

What’s the problem? The UK is falling behind other countries in approving and adopting new myeloma treatments, and patients are paying the price.

What needs to change? We need research and drug access systems to work in harmony to deliver better access to treatment innovations.

STEP 2:

What’s the problem? Many people with myeloma spend years on continuous treatment and live with serious side effects, repeated hospital visits and constant disruption to daily life. Yet, quality of life is often overlooked when new treatments are being developed.

What needs to change? Innovators must focus on improving as well as extending people’s lives.

STEP 3:

What’s the problem? Myeloma affects each person differently, yet access pathways still rely too often on a one-size-fits-all model. If we want to find a cure for all patients, we cannot accept this lack of differentiation.

What needs to change? Treatments must be tailored to individual patients.

STEP 4:

What’s the problem? Strict eligibility rules and outdated restrictions often stop clinicians from using the treatment that best fits the patient’s needs. As a result, too many patients are excluded from or miss out on new treatments and have to settle for substandard treatments with reduced effectiveness and increased side effects.

What needs to change? Treatment pathways must become more flexible and more patient-led.

STEP 5:

What’s the problem? The approval of a drug by NICE means little if local barriers delay rollout of a treatment to a particular trust, hospital or region and lead to patients missing out on the most effective treatment.

What needs to change? Approved treatments must reach patients quickly and fairly.

Lou Martinez, from Thatcham, Berkshire, was 44 when she was diagnosed with myeloma. She is now backing the Closer to a Cure report and calling for decision-makers to put myeloma patients first.

She said:

“These are people’s lives we’re talking about. We should have the absolute best opportunity to live a longer life. I know someone who died because a drug didn’t get approved in time. They missed it by two months. I always say: approved doesn’t mean available. And it’s the same for licensed in the UK: licensed doesn’t mean available.”

Over the next few months, Myeloma UK will meet with anyone involved in getting treatments approved to discuss how to take each recommendation forward.