Live in Wales? Write to your Senedd candidates and ask them to ensure patients have access to eltrombopag! On May 7th, the people of Wales go to the polls to elect new members of the Welsh Parliament. These men and women will have huge powers to impact people’s lives in Wales in the areas of education, transport, the environment and health care. This election is an opportunity for those impacted by aplastic anaemia to raise the vital issue of fair access to medications for those living with rare diseases. What is eltrombopag, and why is it important? Eltrombopag is a medication that, when used alongside standard immunosuppressive therapy (ATG + cyclosporine), significantly improves response rates and speeds haematologic recovery in patients with severe aplastic anaemia. Use of eltrombopag can be potentially life-saving when a transplant is not a treatment option, and ATG alone may have failed. However, not all patients in Wales have access to eltrombopag. Decisions regarding access are often made based on cost rather than what is best for the patient. There is no national policy or fund in place, meaning access to this life-saving medication more often than not comes down to luck. This wasn’t always the case. During the Covid-19 pandemic, all patients in Wales with severe or very severe aplastic anaemia had access to eltrombopag. Decision makers recognised how important this medication was to improving outcomes and keeping patients out of hospital during this time of crisis. However, by the end of 2021, access to eltrombopag was removed for patients. In 2022, a study further proved the hugely positive outcomes for patients when prescribed eltrombopag. The RACE Trial found that: Standard immunosuppressive treatment, ATG plus cyclosporin with eltrombopag, was more beneficial for participants with severe and very severe aplastic anaemia, compared with standard immunosuppressive treatment. The response in participants with severe aplastic anaemia after the addition of eltrombopag to standard immunosuppressive treatment was faster and of higher quality. Adding eltrombopag to standard immunosuppressive treatment was not associated with more side effects. Despite all the evidence, and the NHS in Wales previously prescribing eltrombopag as standard, today there is no guarantee that an aplastic anaemia patient in Wales will have access to this vital medication. Use this simple guide to write a letter to your Senedd candidates and ask them to support equal access to eltrombopag Step 1: Find out who your candidates are Find out who your candidates are and their contact details to reach them. It is valuable to write to all candidates and build momentum even if they are not from the political party you support, or if they’re unlikely to win in your area. If you are struggling to find information about your local candidates, information about candidates in each constituency is being collected online by the independent website, 'Who Can I Vote For?': https://whocanivotefor.co.uk/ Step 2: Start with our sample letter Dear [candidate name], I am writing to ask you to support access to a vital medication for a rare disease community in Wales. Aplastic Anaemia is a rare and life-threatening blood disorder caused by the bone marrow not functioning properly. Eltrombopag is a medication that can be potentially life-saving for patients when a transplant is not available, and other treatment options alone may have failed. This rare condition impacts around 10 people in Wales each year, however access to eltrombopag as a treatment often comes down to chance. There is no national fund or access decision, meaning that access to this vital medication is a postcode lottery. If elected, would you commit to writing to the All Wales Medicines Strategy Group, asking them to carry out an urgent appraisal of eltrombopag as a treatment for aplastic anaemia and use your position to influence the Cabinet Secretary for Health and Social Care to take action? During the Covid-19 pandemic, all patients in Wales with severe or very severe aplastic anaemia had access to eltrombopag due to improved outcomes and reducing the number of people in hospital during a time of crisis. However, by the end of 2021, access to eltrombopag was removed. If you would like more information about aplastic anaemia, treatment options and why eltrombopag is important, then you can contact the Aplastic Anaemia Trust, which is leading a campaign to deliver real change for patients in Wales. Thank you for your time. Yours sincerely, [your name] Step 3: Make it personal Share your story, the impact aplastic anaemia has had on you, your friends, your family and your community. By making your letter personal, you are making the issue real to a person who may have never heard of aplastic anaemia before and increasing the likelihood they will take action. Step 4: Let us know you have taken action You can copy us into your email ([email protected]) or contact us to let us know you have contacted your candidates and if you get a response. You can also share your letter on social media, tag us and encourage others to write to their candidates. This is just one of the first steps in our campaign, and the more we can do to build momentum, the better. Finally: Register with The Aplastic Anaemia Trust. Registering with the AAT helps us understand how many people are living with rare bone marrow failure in the UK, and helps us to support you with information, events and support services. It also means we will be able to keep you updated as the campaign develops, and how you can get involved. (Make sure you opt in to emails and provide your contact details!) Register here Don’t live in Wales but want to get involved? Then don’t worry, over the coming weeks and months, we are going to be asking those impacted by aplastic anaemia across the UK to take action to ensure all patients get access to the vital medications they need regardless of where they live. We'll be posting ways to help on this campaign page, make sure you register with us so you don’t miss out on all our upcoming activities. Manage Cookie Preferences