The Czech Myeloma Group became an official affiliate of the IMF in 2007. In the IMF booth in the exhibit hall at the European Hematology Association annual congress, we spoke to Roman Hájek, M.D., chairman of the board of the CMG, the Czech Myeloma Group (Česká Myelomová Skupina), about what he sees as the major advances in myeloma treatment based on this conference (EHA) and ASCO, which just concluded.
The first of his two key points is his concern that studies of new drug combinations may not be cost effective for myeloma patients in his country:
Dr. Hájek: The problem I can see, because our economy is not so powerful, is that there are so many trials just trying to combine very expensive drugs together, and I am not sure that there is a beneficial and cost effective ratio that will be acceptable in two-thirds of the world… and they are probably just slightly better than if you use one new drug with corticosteroids plus alkylating agents.
This is actually our approach. We are never using monotherapy and whenever possible we are using one new drug, plus steroids plus alkylating agents.
IMF: So you’re asking if the increased efficacy of putting new drugs together justifies the increased cost.
Dr. Hájek: That’s what I’m talking about and I’m definitely not sure.
He says in the Czech Republic, as in most places, they rely on the novel therapies for treatment, VELCADE, thalidomide, and now REVLIMID. He says the use of stem cell transplants is fading, although transplant plus new drugs will still be an important tool for the next ten years.
His other key point from the conference is the concept that long-term maintenance is a “refreshing idea”, but he cautions that he wants to see the results of randomized trials before making a final recommendation:
Dr. Hájek: My feeling now is that two or three years ago people said maintenance and consolidation didn’t make sense – it is too toxic. And now this is changing because it looks like lenalidomide (REVLIMID) can be used for a long time period, with very limited toxicity so it’s good enough for patients. So that has again opened this idea of maintenance and consolidation.
From there, we discussed myeloma in the Czech Republic, and some of the programs his group has begun:
IMF: How did you start a group for myeloma in the Czech Republic with a relatively small patient population?
Dr. Hájek: In the beginning it began with our intention to run our own clinical trials… So we established a Czech myeloma group to encourage physicians to enroll patients in (our first national) trial. (Since) this time the situation changed. We now have two organizations. One mostly focused on hematological specializations - physician problems, running trials, organizing meetings, and so on, and a second one focused on patients – quality of life, organizing seminars for patients and so on. And finally, two years ago we established a new comprehensive research center for myeloma, so I think step-by-step we have established a very comprehensive network with one strong research center, and this is effective work and I am happy to follow this path.
IMF: You have seminars and, in cooperation with the IMF, publications for patients translated into Czech (7 brochures in the Czech Republic and the Slovak Republic). Tell us about programs specific for you.
Dr. Hájek: One of these programs is education program (CRAB) which talks about quality of life to newly diagnosed patients, simplifying things focused on the issue of early diagnosis. This is not a program for patients; it is focused on the physicians and the key physicians responsible for recognizing the symptoms such as neurologists, orthopedists, rheumatologists. And the ambition of this program is to reduce diagnosis from late stage III from 70% our current status, to less than 50% and to reduce serious health damage that can significantly decreas a patient’s quality of life from 20% to 10%...
This is part of our global program of quality of life. Because, as prognosis of patients improves it really makes sense to live for 5, 10 years with good quality of life. But if you are on dialysis, that’s not good quality of life actually.
So that’s one of the interesting programs, for physicians, not for patients, but it is beneficial for patients.
IMF: Turning to your programs directly for patients, in medical jargon, SPA refers to Special Protocol Assessment for FDA drug approvals. But when you SPA, you mean literally a spa for therapeutic relaxation!
Dr. Hájek: We have just started to prepare how to achieve our goals with this. When a patient is going to the spa, the personnel don’t know about myeloma, so they don’t do rehabilitation properly. That’s what we are focused on. So the simple idea is to select one or two spas in the Czech Republic, to educate the personnel there and to recommend these spas to our patients. That’s easy. We can hold some education seminars right in the spa for patients. I think it’s small but a very smart program.
And the last one, probably the most important for patients and their families is to establish a network of psychological care in the Czech Republic. As myeloma becomes a chronic disease, we need a network of educated psychologists who have experience with multiple myeloma. So this is a program, partnered with Celgene, and the proposal is during three years we will pick some key centers in the Czech Republic in which educated psychologists focused on multiple myeloma will be available.
IMF: Very innovative programs. When you come to meetings like this, do you share these ideas?
Dr. Hájek: We discuss it mainly with patient organizations.
IMF: Speaking of patients organizations, what does it mean to you that we’re now sitting here talking in the IMF booth?
Dr. Hájek: It’s really a privilege for us that something is behind us, to be in this community. It means also that we are doing good and quality things for patients… We are a small country, 10 million people, and we think it’s good to set an example that even in a small country that things should be organized like this. Not just focused on new drugs but it’s a complexity of issues: patients, research, clinical trials… So, we really need to do a good job and I hope we’re doing it.