Closer to a Cure: Unlocking faster, fairer access to life-changing treatments
Myeloma UK is dedicated to unlocking faster, fairer access to life-changing treatments, so people living with myeloma can live as well and as long as possible.
Myeloma UK has helped secure approval for every myeloma treatment available to NHS patients. We have been a critical part of every National Institute for Health and Care Excellence (NICE) appraisal, providing strong patient evidence to inform decisions.
Over the past 30 years we have gathered evidence, challenged decisions, campaigned for changes to policy and health systems, and helped people get access to more than 20 myeloma treatments. This work has changed lives, more people are living longer, and many are living better because of the treatments that are now available.
However, myeloma remains incurable and the burden of treatment is too high for too many people.
The system that brings innovation to patients is too slow and uneven. People with myeloma still face delays in access, restrictions on treatment choice, and unfair differences in care depending on where they live.
Closer to a Cure
Our Closer to a Cure report combines the testimony from the myeloma community and their experience of myeloma treatment with our knowledge of access policy. It contains an action plan with five practical steps to streamline innovation and collaboration within the NHS, so patients can get faster, fairer access to better treatments which will take us closer to a cure.
People living with myeloma do not have time to wait. They should not be asked to settle for ‘good enough’. Together, we can build a system that gives people faster, fairer access to the better, kinder treatments they urgently need.
Everyone has a role to play, and if we act now, together we can turn the hope of a cure into something real.
“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.”
Lou Martinez, living with myeloma
The challenge
The people we speak to who are living with myeloma consistently tell us that they want faster access to innovative treatments that help them live longer and with fewer side effects. They also want care that is tailored to their individual needs, giving them greater flexibility and ensuring that they receive the right treatment at the right time.
But we know the UK is falling behind other countries in approving and using myeloma treatments. Quality of life is often overlooked when new treatments are developed, and access pathways are still built around a one-size-fits-all model.
Today’s health innovation and access system is not keeping pace with the change we urgently need to get closer to a cure. Policy is too fragmented, and ambitions across research, regulation, and assessment are too often disconnected.
People living with myeloma cannot afford a system that moves slowly, works in silos, or accepts unfair gaps in access.
How we overcome it
We can only make progress if all partners act with greater urgency and a clearer focus on what people want: longer lives, a better quality of life and more personalised choices.
Everyone involved in bringing innovation into the NHS should focus on one clear goal: getting the best possible treatments to people as quickly and as fairly as possible.
To unlock faster, fairer access to treatment:
1. Research and drug access systems must work in harmony to deliver better access to treatment innovations
The UK is falling behind other countries in approving and adopting new myeloma treatments, and patients are paying the price.
For better access to innovation, we need:
- A Government lead and an independent strategy for medicines investment and access
- A joined-up, Government-led review of the resources used to deliver access to new treatments, including NHS spending, National Institute for Health and Care Research (NIHR) funding, voluntary scheme for branded medicines pricing, access and growth (VPAG) commitments, early access initiatives and implementation, so money can be pooled or redirected to remove barriers and improve value
- Better metrics to show whether changes to life sciences policy and access pathways are delivering real benefits and better outcomes for patients and their families
2. Innovators must focus on improving as well as extending people’s lives
Many people with myeloma spend years on continuous treatment and live with serious side effects, and constant disruption to daily life. Yet, quality of life is often overlooked when new treatments are being developed.
To improve as well as extend life, we need:
- Researchers and pharmaceutical companies to invest in the development of kinder treatments, including steroid-free options, flexible dosing and longer breaks from treatment
- Pharmaceutical companies to collect stronger quality of life evidence from the start, not just the minimum needed for a product licence
- NICE to continue assessing and valuing quality of life better, so real patient experience shapes funding decisions
3. Treatments must be tailored to individual patients
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.
To deliver personalised treatments, we need:
- Charities, research institutions and pharmaceutical companies to fund more research to show which tailored treatments work best
- The MHRA, NICE and the NHS to ensure their processes allow the approval of treatments for different patient groups
- A sustainable, fully funded route for the national NHS approval of personalised treatment approaches developed by academic research
- The NHS to increase funding for and improve access to diagnostic tests that can identify the best treatment for each person
- The pharmaceutical industry, NICE and the NHS to take a co-ordinated approach to delivering personalised myeloma treatment, with UK-wide access to the three key elements: genome-based diagnostics, MRD testing, and treatment pathways that can be tailored to individual patient need
4. Treatment pathways must become more flexible and more patient-led
Strict eligibility rules and outdated restrictions often stop clinicians from using the treatment that best fits the patient’s needs.
To increase flexibility in the myeloma treatment pathway, we need:
- A NICE- and industry-led review of the causes and impact of ‘optimised’ recommendations
- Clinician- and patient-led review of guidelines and NHS eligibility rules to ensure they are keeping pace with changes in treatment approvals and clinical practice
- A Myeloma UK–led review of the treatment pathway to identify ways to increase flexibility and reduce access gaps
5. Approved treatments must reach patients quickly and fairly
A NICE decision means little if local barriers delay rollout and lead to patients missing out on the most effective treatment.
To speed up and improve access to new treatments, we need:
- A Myeloma UK–led review of what slows the rollout of new myeloma treatments, so key systemic barriers can be identified and addressed
- The Government, the pharmaceutical industry, and the NHS to improve access to clinical trials and early access schemes so new treatments reach patients faster
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