Closer to a cure: Our roadmap to unlock faster and fairer access to treatments
Over the past 30 years, treatment for myeloma has been transformed. While that progress has changed lives, myeloma remains an incurable cancer. Life expectancy following diagnosis still lags behind many other cancers, and the burden of treatment is also too high for too many people.
That’s why our landmark new report sets out 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 geographical inequalities, remove the barriers preventing people from receiving the most effective drugs and put treatment in the hands of patients faster.
We know that clinicians treating people with myeloma today must contend with delays in accessing new treatments for their patients, restrictions on treatment choice, and the care they can offer can vary depending on where they are. These restrictions, discrepancies in care and delays in access aren’t just frustrating, they can shorten people’s lives and have a huge impact on quality of life.
The Closer to a Cure report lays out five key steps to speed up and improve access to treatments and bring us closer to a cure.
It also urges the Government, the NHS, drug-approval body NICE, the pharmaceutical industry, researchers and 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 in getting 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.”
We are at a defining moment for treating myeloma. As our knowledge of myeloma improves and the number of treatment options increase, we need a system that allows us to use those treatments more flexibly – to be able to change the way we treat myeloma and help us move to a more patient- and clinician-led approach. One that gives people access to kinder treatments with fewer side effects and supports personalised approaches that give clinicians the flexibility to match treatment to individual need.
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 our 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.
Over the next few months, Myeloma UK will meet with decision-makers and anyone involved in getting treatments approved to discuss how to take each recommendation forward.
If you would like to know more or share your experiences of delayed access or inflexibility in the pathway, contact the policy team at policy@myeloma.org.uk
