Myeloma UK

We’re pleased to give you an update about elranatamab. We’ve received the news that NICE will review its decision to restrict access to elranatamab after Myeloma UK raised serious concerns about the move. You might recall that earlier this month the new bispecific antibody drug for myeloma was approved through the Cancer Drugs Fund for people at fourth line and beyond in England and Wales. The announcement came with some unexpected limitations and we’re pleased to let you know that NICE will now review the restrictions that were put in place. Under the restrictions set out by NICE, elranatamab is only available as an alternative to pomalidomide (Imnovid®) plus dexamethasone. This means that those who have already received treatments like IsaPD - a combination of isatuximab (Sarclisa®), pomalidomide and dexamethasone - or pomalidomide plus dexamethasone (PD), aren’t eligible for the bispecific antibody.  Myeloma UK, along with the pharmaceutical company behind the drug, clinicians and other relevant organisations, now have four weeks to make the case for the restrictions to be lifted and for wider access to elranatamab. Our Director of Research and Advocacy, Shelagh McKinlay, said: “We have been in close discussion with NICE and the company behind the drug in recent weeks, and we are really glad to have this clear opportunity to make the case for these restrictions to be lifted. “We will now submit more evidence on behalf of the myeloma community and continue to do everything in our power to get these restrictions removed. “Patients must not be unfairly left behind when new effective treatments are approved.” Read more: https://lnkd.in/eRA7-QBH  

We're pleased to announce that Teclistamab (Tecvayli®) has been approved on the NHS in England and Wales today, with conversations still ongoing regarding the full scope of access to the drug. This new bispecific antibody has been shown to stop myeloma in its tracks for more than 11 months. Teclistamab is aimed at people at fourth line and beyond whose cancer has progressed since their last round of treatment and who have previously received an immunomodulatory agent such as lenalidomide (Revlimid ®), a proteosome inhibitor like bortezomib (Velcade®) and an anti-CD38 antibody like daratumumab (Darzalex®) and isatuximab (Sarclisa®).   It is currently only available as an alternative to pomalidomide (Imnovid®) plus dexamethasone.  Over the next month, Myeloma UK and other relevant organisations, including the pharmaceutical company behind the drug, will push for wider patient access before the final decision on the full scope of the approval is reached. Read more: https://lnkd.in/epaWK8k4 Our Director of Research and Advocacy, Shelagh McKinlay said: “Myeloma UK has been involved in every committee meeting about teclistamab and we believe this decision is flawed. These restrictions are deeply unjust and will no doubt come as a blow to those for whom this new drug could have been a lifeline. “However, it is important to bear in mind that this is not a final decision and we’ll redouble our efforts to get these restrictions lifted and secure wider access for teclistamab. “Until we have a cure, it is absolutely vital that people with myeloma are given as many options to tackle their cancer as possible – no matter where they are on their treatment journey.”

We often hear from patients and their families and friends interested in keeping up with the latest research, particularly newly available treatments and those in development stages. In this month's Ask the Nurse blog, we are exploring some of the questions we are asked on our Infoline about bispecific antibodies: https://lnkd.in/eQkvedPb #Myeloma #MyelomaUK #PatientInformation

Congratulations to Jane Hogan, our latest highlighted volunteer! 🧡 Jane was diagnosed with myeloma in March 2020, seven months after first visiting her GP with severe back pain. Following her diagnosis, Jane jumped at the chance to help publicise Myeloma Awareness Week by sharing her story and recording voiceovers for our social media campaign. We spoke to Jane about the campaign and she said: “I helped with the awareness campaign by recording voiceovers for social media clips as well as talking about my experience to be used in press articles. Although it has been an emotional process, it’s been therapeutic to talk openly and to know that I can make a difference to others. My wish for the future is to see my grandchildren grow up.” Read Jane's story here: https://lnkd.in/eEv5ZcR5 If you would like to find out more about volunteering opportunities, email volunteering@myeloma.org.uk 📩 #Myeloma #MyelomaUK #BloodCancer #Volunteering

It's general election week! Will you add your name to our letter to the new UK government and ask them to make myeloma a priority? In our letter we’re calling for: 👉 Investment and support for clinical trials 👉 Increased research and development investment in the UK 👉 Commit to working with Myeloma UK and the NHS to reduce delays in diagnosis Find out more and add your name here: https://lnkd.in/dw4zDcYk #Myeloma #MyelomaUK #GeneralElection2024 #BloodCancer

This Pride month we wanted to signpost to some other organisations that our community might find helpful. 🏳️🌈 No two people are the same. We all have unique and personalised needs and wants with healthcare. Myeloma treatment and care is tailored to the person; from the drug combinations used, the doses administered, and the supportive care given alongside active treatment. However, this should extend beyond drug treatments to the social, psychological, and emotional support offered to everyone, regardless of their background, including those in the LGBTQIA+ community. OUTpatients is the UK’s only LGBTIQ+ cancer charity. They are led by and for LGBTIQ+ people affected by cancer and work hard to support and advocate for the community 👉 outpatients.org.uk Macmillan Cancer Support offer specific information and publications about LGBTQ+ people and cancer 👉 macmillan.org.uk/lgbtq If you want to talk, our Infoline offers information, support, and a listening ear for anyone affected by myeloma – you can call us on 0800 980 3332. #Myeloma #MyelomaUK #BloodCancer #Pride

We are delighted to announce that we have appointed a new Chair of the Board of Trustees and two new Trustees. Our new Chair, David Ereira OBE, joins us with extensive experience working with the third sector and government agencies and is keen to help drive Myeloma UK forward and “rewrite the future for people affected by myeloma”. Rachel Snow-Miller and Deb Lancaster, our new Trustees are joining us with decades of experience in the NHS and pharmaceutical industry, and are ready to spearhead change for the myeloma community. Rachel was moved to join Myeloma UK after being diagnosed with blood cancer and facing lengthy delays in diagnosis herself, and Deb spent 30 years in the pharmaceutical industry, most recently as Market Access Director at Roche and Novartis specialising in oncology, before taking on her current role as Service Owner at Genomics England Ltd. Read more about David here: https://brnw.ch/21wKYH6 Read more about Rachel and Deb here: https://brnw.ch/21wKYH3 #Myeloma #MyelomaUK #BloodCancer

The general election is right round the corner and we need your help! Will you add your name to our letter to the new UK government and ask them to make myeloma a priority? We’re making amazing progress in the research and treatment of myeloma but we need to go further, faster. We are writing to demand that the next government supports our pledges and is a part of the progress we need to make, because people with #myeloma can’t wait. Find out more and add your name here 👉 https://lnkd.in/dw4zDcYk

We would like to say a huge THANK YOU to everyone who got involved with our #InMyeOwnWords campaign this Myeloma Awareness Week. 🧡 If you were part of the incredible 2500 downloads of our symptoms tracker, please fill in our quick survey so we can track which GPs we reached and the areas we still need to reach out to: https://lnkd.in/gqtwwjjW

This is Carol. One of her first symptoms was peripheral neuropathy which made her feel like she'd been plugged into the mains. This is myeloma in her own words. Join our #InMyeOwnWords campaign and help us raise awareness of the symptoms of myeloma by sharing this post and letting us know what peripheral neuropathy felt like to you (if you experienced it) so others might spot the signs.