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Blood cancers comprise approximately 10 per of all cancers and are the fourth most common cause of cancer-related deaths in Ireland.
In an effort to raise public awareness, a number of events and talks were held, in collaboration with the Irish Cancer Society, over September for blood cancer awareness month. According to Prof Elisabeth Vandenberghe, Consultant Haematologist, St James’s Hospital Dublin and Clinical Professor in Trinity College Dublin, there is now greater recognition of the challenges posed in treating different blood cancers, such as leukaemia, myeloma, and lymphomas.
“If a person is feeling unwell, they tend to go to their GP and their GPs tend to do bloods if they can’t work out what is going on and the diagnosis is, therefore, made relatively quickly,” Prof Vandenberghe told the Medical Independent (MI).
Prof Elisabeth Vandenberghe
“Now lymphomas are slightly different because they often affect young people and you can get enlarged lymph nodes, which are completely painless. And people may not think they are significant. So with lymphomas in Ireland, unfortunately, we still get late diagnoses. I would say more commonly in young fit people, who can cope with being a little bit under-par without noticing an awful lot.”
Some myelomas, where the early symptoms include bone pain, are also diagnosed at a later stage. However, on the whole, Prof Vandenberghe said that, apart from these exceptions, early diagnosis is not a major issue. She argued the big challenge with blood cancer is that it often turns into a chronic condition, estimating up to two-thirds of patients within haematology services live with their disease for a long period of time.
“They have in effect a chronic disorder and that is very unusual in cancer because most patients are either in remission or relapse; there is nothing in between,” according to Prof Vandenberghe.
“So this is a very different model of cancer to anything else that people encounter. People can live well with these diseases but they do need ongoing haematological input. For instance, there is one disease that I look after called follicular lymphoma. So, when I started doing haematology the median survival for those patients was about eight years and now it is in excess of 15 years.”
Prof Vandenberghe said there is a lack of knowledge and awareness about the challenges faced by this patient population.
“It is lack of awareness, both in health planning and also a lack of awareness from patients who have to deal with it, they may be working, they may be a little under par at times, they may not be able to travel, they may need more visits to GPs,” she explained.
“So there are lots of ways in which the chronic haematological malignancies impact on patients, probably financially, socially, and on our services. We don’t really have a very good handle on that. We don’t even have an idea of the prevalence of these problems in Ireland.”
So while early diagnosis of blood cancer is important, Prof Vandenberghe said emphasis also needs to be put on ensuring people can live well with the disease. In terms of medical services, this means more resources are needed to hire additional consultants and medical professionals to help treat and manage blood cancer patients.
“There isn’t enough of anything in the Irish medical service at present because of absolutely vicious cutbacks since 2008,” she stated.
“The problem now is junior doctors don’t go on to work in Ireland because of the conditions, not the pay, but the conditions are not good, because they work very long hours and consultants are not coming back to Ireland for the same reason. Before we had a very competitive group of haematologists in Ireland who all trained abroad.
“There are also absolutely huge issues with the hiring of nurses. Nurses are absolutely key to minding these chronic patients. There are insufficient posts in our hospitals and probably every other haematology unit in the country, and there are insufficient people to take up the posts should we be able to advertise tomorrow. And most of our infrastructure is groaning at the seams. Frankly, the whole service is creaking in trying to manage these patients.”
Patients with chronic diseases need to be put under well-run surveillance programmes, according to Prof Vandenberghe. However, this is difficult within the current environment of under-resourced hospitals.
“Care is generally delivered within very, very busy outpatient departments throughout the country. You need very good diagnostic facilities so you can accurately diagnose. There is an increasing need for very precisely sub-dividing these patients. When I say sub-divide, I mean sub-classify, often with molecular techniques. Through precision medicine we can know the defect that causes the malignancy and give a treatment that is very tailored to that malignancy. Some of these drugs are under trial in Ireland and worldwide and some of them are going to be expensive. In other words, to make all of this flow well, you need very good diagnostics, you need to have patients under good surveillance programmes, under the auspices of a haematologist, but with nurses and GPs involved. And then there is a lot of supportive care involved. For instance, one group of patients I look after, chronic lymphocytic leukaemia (CLL) patients, are very prone to secondary skin cancers. Sometimes you may only see a CLL patient once a year. During that year you have also got to do a general cancer check because they are more prone to other secondary cancers. Ideally you would also have a look at their skin. It is really a holistic approach to patients and there is no ‘one-size-fits-all’ approach.”
Prof Vandenberghe stressed while infrastructure and staffing are of vital importance, new therapies introduced in recent years have improved outcomes for patients. As examples, she pointed to brentuximab vedotin, which is used in Hodgkin’s lymphoma, and ibrutinib, which is used in chronic lymphocytic leukaemia and some lymphomas. Also the drug nivolumab, which is a human programmed death receptor-1 (PD-1) blocking antibody, offers hope for patients with classic Hodgkin’s lymphoma that has relapsed or progressed after autologous hematopoietic stem-cell transplantation (HSCT) and post-transplantation brentuximab vedotin. However, in Ireland the drug has been rejected on cost-efficiency grounds by the National Centre for Pharmacoeconomics (NCPE), while a ‘compassionate’ access scheme to make it available for free for Irish patients has recently ended.
A revised proposal has been submitted to the NCPE by the manufacturers and a decision is due in the near future. Despite these difficulties, however, Prof Vandenberghe said new drugs and research make this an optimistic time for those working within the area of blood cancer and their patients.
“There are a huge number [of new treatments] coming down the track,” she said.
“The important thing for us to be able to use these is to open clinical trials in Ireland, through Cancer Trials Ireland (CTI), and to ensure they are used appropriately for the right patients.”
The establishment of the Blood Cancer Network of Ireland (BCNI) is another positive development for the field. Unlike CTI, which specialises in attracting phase 2 and 3 trials to Ireland, BCNI specialises in phase 1 trials. Earlier this year it was announced that more blood cancer patients are to benefit from research network expansion, with the Mater and Beaumont Hospitals in Dublin joining the BCNI. The Irish Cancer Society, which made the announcement, stated it is committing €450,000 over the next five years to support the expansion of the Network.
“Of course any research is good for patient management,” Prof Vandenberghe said.
“These will also lead into more basic research, diagnostic research, which is an area I am quite interested in. Any initiative is going to improve things.”
Similarly, Prof Vandenberghe is supportive of the imminent new national cancer strategy, but stressed it is vital that it is properly resourced and funded.
“If money [is put] behind these things they will make a difference. I am also a great believer; I am a great housekeeper. I like money to be spent well,” she said.
“I think it needs to be targeted and well managed. At the moment we just don’t have enough. If a front-line service is under such pressure, it means you can’t plan. And if you can’t plan and develop then you have a more inefficient system. Much more needs to be going into planning and front-line services, real front-line services and not the usual approach to dealing with front-line services. And then we can hope to implement the cancer strategy, which we all want.”
Prof Vandenberghe said medical professionals and managers need to listen to blood cancer patients to find out what they want in relation to the management of their condition. With this in mind, the Lymphoma Forum of Ireland (LFI), a not-for-profit organisation dedicated to best practice in the treatment of lymphoma, recently organised a patient support group meeting. The meeting was organised due to the feeling that patients with lymphoma are not receiving adequate support and education about their condition.
“We do need to involve patients, especially with these low grade malignancies, a little more in how they want the resources to be used,” Prof Vandenberghe said.
“So, out of this I hope we can get together a group of patient stakeholders who will be constructive in trying to tell us what it is like for them to live with these diseases.”