2019 EHA Conference

In this blog, our Advocacy Officer, Charlotte, talks about the EHA conference she recently attended and why meeting like these help Leukaemia Care to put the patient at the forefront of haematology.

A couple of weeks ago, I was in Amsterdam at the 24th annual congress of the European Haematology Association (EHA). It is one of the biggest scientific updates of the year, with around 12,000 people attending this year.

The conference ran over four days (Thursday to Sunday) and there were numerous sessions that covered research, clinical care, policy and advocacy.

Why does Leukaemia Care attend the conference?

A conference allows patient advocates, like me and Patient Advocacy Director, Zack Pemberton-Whiteley, to get a lot done in a short space of time. We can meet with other patient groups to discuss what needs to be done to improve life for patients. We meet with doctors to tell them more about the latest Leukaemia Care activities and to make sure as many patients as possible are told about the support we offer. We also make sure we are up to date on the latest information about new treatments; this is particularly useful when we have to make a case for these drugs to be funded on the NHS by getting involved in the NICE process.

What happened this year and why is it interesting for patients?

It is really important for us to share with you what was discussed at EHA, as Leukaemia Care represent UK patient views and opinions at events like these. Therefore, we want you to know how we are working towards ensuring every aspect of haematology is patient-focused, to get you the best outcomes. I would encourage you to give us feedback, via our patient survey when it opens or on an individual basis, so we know what the key issues for patients really are. Evidence is key.

With only four days and hundreds of sessions at the conference, it is impossible to hear everything and even more difficult to choose what to attend! There were some great topics covered by the clinicians, including CAR-T therapy, minimal or measurable residual disease and combination therapies in CLL. I have made some videos that sum up these “hot topics” and why they are interesting, which we will share on our social media and YouTube channels in the coming weeks. Please feel free to get in touch if you have any questions on anything discussed.

As well as the haematology sessions, there were also a lot of policy debates and many were organised by patient groups. Here’s an overview of the topics that were discussed:

  • Who should be making decisions about whether a drug is available to patients?

The current system is quite complicated. Decisions about safety, efficacy and cost-effectiveness of drugs are made by different organisations.

Our Patient Advocacy Director, Zack, gave a presentation on how patients are already involved in the NICE process in the UK. He made the point that patients are best-placed to give evidence about how a drug impacts on their life, particularly regarding things like the ability to go back to work, spend less time in hospital etc. Importantly, these are things that are not currently measured in clinical trials, making patient involvement even more important to avoid key benefits being missed. The current process does not value this information as much as it could and needs updating.

  • How can we measure quality of life for patients?

As mentioned above, treatments for blood cancer do more than just treat the disease or its symptoms; the impact of feeling well can mean a lot to patients and should be taken into account when assessing the benefit of a drug. However, to be able to compare the effect of different treatments on someone’s quality of life, we need tools that measure the change objectively. This means the tool should measure changes that are important to patients and must do so consistently.

Patient reported outcomes, or PROs, are being developed to attempt to measure this. A group of haematologists, formed from members of EHA, have developed just such a tool to do so and presented it at EHA. It’s called HM-PRO and is essentially a questionnaire for patients to fill out to assess changes in their symptoms and their life more generally. The presenters showed how the questionnaire has been tested by patients to ensure it is relevant, consistent, easy to do and complete in covering all patient issues.

In the same session, Zack gave a presentation on a quality of life survey being run in acute leukaemia patients. This survey builds on previous findings that acute patients face particular difficulties as a result of their diagnosis, including inability to work, loss of income or problems travelling. The findings of this new survey will then be used with HM-PRO to determine the key quality of life issues for acute leukaemia patients; i.e. which areas have the biggest impact on quality of life as measured by HM-PRO.

If you would like to participate in the acute leukaemia patient survey, you can do so at www.acuteleuk.org/QoL-survey.

  • How do we decide whether to pay for a drug, and how much to pay for it?

Health economics is a very complex area; ultimately, especially with systems like the NHS in the UK, there is a limited pot of money. Therefore, it must be necessary to see whether a drug is worth the money the manufacturer is asking to be paid.

Economist João Carapinha began a debate around this issue in a session at EHA. He presented two main schools of thought in this area; one is fair pricing, which suggests that a price paid for a drug should reflect the effort it took to develop and make the drug. João outlined how this relies on transparency from manufacturers that doesn’t currently happen and may not be possible; however, this is a pricing strategy being examined by the World Health Organisation currently.

The other system is value-based pricing; this is where a decision to buy a drug or not is based on the benefits that a drug can bring. This is the system used by NICE in the UK. However, as discussed above, certain benefits are hard to quantify. It also relies on the ability to put a value on life, which is a difficult thing to do. NICE currently says that it is willing to spend £30,000 for every year a patient gains (known as a Quality Adjusted Life Year, or a QALY), rising to £100,000 – £300,000 for rare conditions. Some health economists argue that this is too high and unsustainable for the health system, whereas others feel that any life should be saved, regardless of price.

Do you agree with fair pricing, value-based pricing, or something else entirely? And is there a need to put a limit on what we are willing to spend, even if it limits access to drugs? These are tough questions to answer, but patients should always have a voice in the decision.


If you have any questions, thoughts or comments on the topics discussed in this blog, please contact the patient advocacy team at advocacy@leukaemiacare.org.uk

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