Keith Stewart, MB, ChB: When we start using even 3 drugs but particularly 4, it is becoming a very expensive proposition. So, Rafael, do you worry about that? Are you seeing any end in sight to the rising cost of care for these patients?
Rafael Fonseca, MD: I think we should all be concerned, and we should all be mindful of what the expenses are of these treatments. I do think that when we talk about the monetary value of these treatments, we have to really talk about value, not only about cost and expenses. Because there’s a benefit that comes of course both to patients and ultimately at the end to society. So how do we calculate that? I don’t think anybody has a perfect answer, but we consider how much you spend. By the way, you consider how much you spend not only on drugs but also on other aspects that have risen as much and sometimes even more, which is physicians’ fees, hospital bills, laboratory testing, etcetera. And then you bring into the question the time of disease control, the prevention of hospitalizations, prevention of blood transfusions, surgery for broken bones, and even from a society perspective, the ability of a person who’s still in an active economic life to go back to work. And this is a very complex topic. Again, I don’t think anyone has the answer, but the answer has to be holistic, has to consider all those challenges.
Keith Stewart, MB, ChB: Mary, I’m going to come back to you because I have lots of questions about how the patients react to all this.
Mary E. DeRome: OK.
Keith Stewart, MB, ChB: But Andrzej, what do you think about this, rising costs and does that impact your practice at all?
Andrzej Jakubowiak, MD, PhD: To some extent it does because I am a member of society, so I have to be responsible to start with. But I think in a really detailed day-to-day practice, not much because I am primarily responsible for helping the patient in the best way I can, the best way I think I can prolong their life, with this objective. But I would jump on this part of the discussion and Rafael’s comments with maybe something [to think about that may be] too optimistic, but I think to some extent is important to mention.
As we are increasing the number of drugs, all expensive, and we are achieving better and better responses with these drugs, which is absolutely something we are amazed about and happy to see, we can potentially visualize, in the near future, the following scenario. That you have patients achieving stringent complete response. MRD [minimal residual disease] is at the lowest level possible, negative, and the patient has received say 12, 18 months of therapy, expensive. But we need to figure out, and I think we are very close, in fact we are working on it, to figure out the endgame. When we can say, OK, this patient has a probability of relapse of less than 10% in 4 years, we can stop. And that may potentially address the issue of cost. Because if we frontload cost, but then patients not only live longer but then they are not even on treatment, not generating more toxicities, that’s the win, and that’s the win we need to work on.
Keith Stewart, MB, ChB: Good point, excellent. So, Mary, what are you hearing from patients with respect to the cost of drugs in the newly diagnosed setting, is it something they’re paying attention to, or they just want to get the best care possible and don’t worry about it?
Mary E. DeRome: Well, I think that what we hear and we actually hear from patients not only from the United States but patients all over the world. And it never ceases to amaze me the fantastic therapies that are available here in the United States that just aren’t available in many countries in the rest of the world, and these patients are suffering. But that availability comes at a price. So in a way, it’s great that these therapies are available, but they are very expensive, and of course some patients do have difficulties paying for them. So we spend a lot of time on the phone in our patient navigation center fielding these calls from patients and providing resources to them where we think we can help. Certainly, many of the companies who manufacture these therapies will enable the patient to purchase it.
Keith Stewart, MB, ChB: Assistance programs.
Mary E. DeRome: Yes, assistance programs, to be able to get the drugs at a lower cost. And there are also patient advocacy foundations, not the MMRF [Multiple Myeloma Research Foundation, but other organizations that will help patients with their co-pays. So we can connect patients with these other organizations.
Keith Stewart, MB, ChB: I think all of us see this as we travel around the world lecturing on myeloma that there is just great disparity between the United States and many countries, some surprising ones. Certainly, in the United Kingdom, it seems right now to be very restrictive, from my perspective. What resources are available to patients? You mentioned some of them. Where do you direct them to get most information?
Mary E. DeRome: So, first we would probably send them to the manufacturers to see if they might be eligible for some of these patient assistant programs. Again, there’s other patient advocacy organizations that help with co-pays. And then we do a lot of research into insurance, Medicare, Medicaid, the particular insurance that the patient may be on to make sure that they’re taking advantage of whatever assistance is in their insurance program as well. Because some patients don’t really know the breadth of coverage for their insurance, and we connect them with resources that can help them decide and define where their responsibility is and how much assistance they can get.
Keith Stewart, MB, ChB: Are there 1 or 2 key Web pages if patients watching or if our peer community is watching, they could go to to get more information?
Mary E. DeRome: I know the Leukemia & Lymphoma Society [LLS] is one of the organizations that will help with co-pay.
Keith Stewart, MB, ChB: Even beyond that just in terms of disease information. LLS is one, your own organization, presumably.
Mary E. DeRome: Right.
Keith Stewart, MB, ChB: And other patient advocacy groups.
Mary E. DeRome: Right, other myeloma advocacy groups.
Rafael Fonseca, MD: If I could just complement, one quick point that is sometimes lost is that there is a big difference in whether the patient gets a medication through government programs versus private payers. Anyone who is in a private payer is eligible for one of those various co-pay assistance programs, most of which can limit the payments per month to the range of $20, $25, $30, and some of them have a cap on income. But when you look at patients with Medicare, that’s where there is a difficulty, primarily because it relates to anti-kickback laws. So the idea was you don’t want to have the copay assistance be seen as an inducer to use that.
Now, unfortunately, for our patients, if you need pomalidomide, you need pomalidomide. It’s not like you’re going to choose between pomalidomide and maybe I’ll try melphalan again. You just don’t do that. So it really puts the patient in the middle. I think we should have a very intense and stringent debate about how we deal with this. But between the policy people, in my opinion, if we could remove this from the bedside, I think if patients were spared that stress. Because in our center we can figure it out, but if you’re being cared for in a smaller practice and the support staff or the doctor don’t know about this, there is a possibility that you would forego treatment just because the monthly payment was too high.
Mary E. DeRome: Right.
Keith Stewart, MB, ChB: For the first time in many years, the group that I find are struggling is, actually if you’re below the income threshold, it seems to be not a problem. But there’s a group of people who fall just above that, and they’re really not wealthy people, but they don’t qualify. And they’ve got $1,000 or $2,000 payments every month for some of these regimens. I have for the first time in a long time, patients say they just can’t afford to take the drug. Do we hear that from patients?