15th Congress of the European Hematology Association (EHA), 10—13 June, 2010, Barcelona

Interview with Jan Geissler (European Cancer Patient Coalition)

Tackling ageism in cancer treatment

My name is Jan Geissler, I’m Director of the European Cancer Patient Coalition which is an umbrella organisation of about 300 cancer patient groups across Europe. What we do is on one hand we give all the cancer patients with all the different cancers, from the common to the rare, a voice in Europe and in all the healthcare policy issues that are being discussed in Brussels, and on the other hand we are helping our patients to build their capacity to represent patients in their countries and in their disease by providing training and doing workshops and explaining how to grow a non-profit organisation.

Are older patients receiving the treatment they deserve?

Some do, some don’t and that worries us, of course, because some patients… we can see from a number of publications that some patients are not getting the treatment that is described in guidelines and recommendations. Some reasons are that probably they are being treated in centres that are not experienced in their disease so they might not be up to date with the current treatment. There might also be reasons, for example on adherence, that they are just not adhering to therapy or taking their cancer serious. It might be just a lack of information - that they don’t know their options and they are not asking to be treated in the way they should.

What did a recent study show about treatment?

There has been a study that has looked at the prescription data of about 10.4 million people and looked at the rare cancer, whether they received the gold standard treatment. And we’ve discovered that there was a steep decline of getting the standard treatment between people that were 40 and people that were 70 and beyond. So basically the share of patients that were getting the standard treatment decreased from above 90% down to about 50%.

Why do you think older patients are not receiving the right treatment?

I had a number of discussions about that with doctors and there are different perceptions on that. On one hand sometimes patients are just not treated by doctors that know of the new therapies and on the other hand some doctors have told me that it is their obligation towards society that they need to prioritise between those patients that can live very long with therapy and those that probably have a shorter life frame. And this is crazy for a 70 year old person which would live for another fourteen, fifteen years by average.

Is there still the belief that older patients cannot withstand treatment?

For many cancers it’s no longer true with the new therapies because they are much more targeted so they are not like the general perception of chemotherapy where people suffer heavily. Of course we can generalise that but the trend is more towards targeted therapies and probably also to manage side effects more precisely and better that you can help patients to cope with the side effects.

What can be done about ageism in cancer treatment?

It has a lot to do with education and information because the difference probably also what we can observe is that younger patients are used to the internet, they just go on the internet, they do research, they speak English, they can find a lot of information, what options, in theory, they have and then they can go back to the doctor and ask questions whilst the older generation often is not so internet literate. So we need to think about how do we communicate to older patients, how do we give them the information that they know what their options are? That’s an obligation that is not only in the field of doctors, that’s also in the field of patient groups – how do we work with not only the patients but also their families to inform them?

Do older patients think that they don’t deserve good treatment?

Some patients are probably just too modest because they’ve been used to growing up in a world where they needed to take respect from the doctor and from the society and so on. We are living more and more in an individualistic world today but still patients just need to understand the options to take their decisions. And we need to also watch their biological age because some people who are 70 are quite old, some people who are 70 are very young and doing sports and are living an active life like someone 20 or 30 years ago was when he was 50.

What message would you give to patients?

Well to patients it’s very clear – inform yourself, get in touch with patient groups. Go to the internet, go to the official cancer information services of your government, try to find out what kind of disease you have and what options you have, then try to find a doctor who has really the best experience in that field to make sure that when you start something, some therapy, that you’re getting up to date therapies. This is a call to patients and patient groups can be the mediator to sort the questions and to reduce anxiety.

Do doctors need to change their attitudes?

What they need to take into respect that today a 70 year old lives another fourteen, sixteen years and that needs to take into respect the communication, talking about the options, giving reason why one treatment is right for him and one treatment is not. So it’s a lot about communication. And, of course, in terms of cancer clinical trials it is very important that they also give patients at that age the option to join trials if there is not a good reason against that.

Why has there been a lack of older patients in clinical trails?

There are a number of reasons, like on the one hand younger patients are often going to the internet so they know about trials and the older patients, if they are just going to the doctor, they might not even know about it if the doctor is not telling them that this might also be an option. So that might be one reason. The other reason is, of course, there might be… older patients, the older people get the more diseases they get and co-morbidities are sometimes an issue so we need to look at how trials are being designed and whether the exclusion criteria on trials are set right or do they just decrease the number of older patients that can go just because they have a cardiovascular disease or have diabetes or whatever. Are there good medical reasons for excluding these patients from trials?

What will be the outcome from further research?

What we get out of research then will probably match what is out there in the field, really, the reality of treating cancer patients. Because if we look at data from clinical trials which are published about a group of, on average, 45 years old but the average patient is 65 years old on that disease, it doesn’t really give us the conclusions on side-effect management, on treatment outcome and so on. So if the age on clinical trials is similar to what the reality out there is, the trials will be much more meaningful in the end.