CLL from a patient and physician perspective
Dr Brian Koffman MD – Medical Director of the CLL Society
I’m a family doctor but I’m also a CLL patient and when I come to these meetings I come with a lot of hats. One of them I wear as a patient because I think it’s very important that patients be aware not only of what the standard of care is but where the research is going, what’s new that’s happening, what developments are there, in terms not only of what treatments are improving but maybe what they’ve found out about some other treatments that maybe have lost some of their lustre, some new adverse events that have been discovered. So coming to these meetings allows me to discover those kinds of things so I can be my own best advocate.
Being both a physician and a patient gives me a foot in both camps so what I do is try to unpack some of that stuff so patients can understand what the latest research means and what implications that has for them in terms of their present and future treatments. So I think it’s very important, especially in a field like CLL where the therapeutic landscape has changed so drastically in the last three or four years, that patients be informed in terms of what the latest news is. There’s not a better place in the world for that than these scientific meetings.
What do you think some of the highlights have been that you’ve seen so far today?
I think one of the most interesting things for me was the debate on whether chemotherapy will be part of the therapeutic landscape over the next ten years. There were strong arguments made in both directions. I was more convinced by the argument that chemotherapy, while it will still be important for a small segment of patients, has done its duty and helped a lot of patients but will be increasingly less relevant to therapy for patients as some of these new therapies move up, move frontline. It’s interesting to see the transition from therapies that were experimental and that were cutting edge that now are considered standard of care. So those are the kinds of things that made the most impact, to see a future where these therapies will be more frontline, more used in combination or sequential that will move to more potential and eventually a positive cure.
What about the costs of some of these new treatments?
That’s a huge issue and it’s a huge barrier to care. In fact, some people think that it won’t be the biology or the science in the future but it will be the cost in the future that will determine the ability to control some of these cancers, especially CLL, where all these novel therapies are very expensive. So the answers to that issue are very complex but I think we have to lower the bar in terms of the cost to get a drug to market. I think some of that may have to do with patients accepting some higher risks, maybe at least in the United States getting attorneys out of the equation so maybe there’s a no-fault kind of system for adverse events which we don’t know about until we do these trials. I think also when you’re calculating cost you can’t just look at the cost of the pharmaceutical medication but you have to say is that allowing that patient to get back to work sooner? Is that allowing that patient to stay at a hospital? Is that avoiding antibiotics or growth factors that can be very expensive? So you have to figure all that into the equation and I don’t think that’s always none in terms of looking at the cost of these medications.
For CLL patients who might be diagnosed today or in the future, what do you think the future holds for them?
What I say is there’s never a good time to have CLL but there’s never been a better time to have CLL. What I can guarantee is that the treatments tomorrow will be better than the treatments today, that there are new therapies coming on-line, second and third generations of already break-through medications that look to improve on what’s going on. So I’d be optimistic, I would be conservative and if you don’t need treatment don’t rush into it. Just become as aware as you can of what’s happening because what’s happening is changing all the time.
Is there anything else you’d like to add?
I just think that it’s a very positive and optimistic time for patients with CLL but we have to be our own best advocates. We have to know what’s going on and if we can’t personally be our own best advocates then have a family member, have your spouse, have your child, have your parent, have someone else help understand what’s going on, have a best friend because you really have to sometimes push for yourself and have to know what’s out there and know what’s going on. If you can’t do it have someone who can help you do that.
