Progress Review on Cancer & Genomics - Part 9 of 10

(H. Koh) Let me start with the first one for Dr. Sondik. Dr. Sondik, could you comment on objectives related to cancer survival? You didn't present data on that, I'm sure because of the interest of time, but do you just want to make some comments on cancer survival? (E. Sondik) Yes. Cancer survival has been rising, although slowly, but it's complicated by the fact that it's overall cancer. So, for some cancers, like breast and colorectal cancer, survival has clearly been increasing over time as the mortality has been declining. But there are other cancers that are increasing, for example, pancreatic cancer, which has very low survival. So, when we put the mix together, we see a relatively small change. We're waiting for an update for our data to actually add a figure for that, but I think, in survival, and I think my NCI colleagues would agree with me, it's important to look at the individual cancers, as opposed to looking at the figure overall...as well as looking at that figure overall. (R. Croyle) In terms of the developmental goal of mental and physical quality of life, just last year, we launched a new data linkage between the SEER registries and CMS's Medicare Health Outcomes Survey. So, this is a linked dataset that allows analysis of pre- and post-diagnosis quality of life at a national level for the first time, but this is still in a kind of exploratory area and word and we now have both internal and external investigators analyzing those data, but if you're interested, you can google that or look on the NCI website for the SEER-MHOS dataset. (H. Koh) Thanks. That was Dr. Croyle commenting. Thank you very much. The next question goes to Ms. *** in Oregon. Can you comment more about insurance coverage for genetic testing and genetic counseling? I know you have a lot of insurance plans at the table working with you. A questioner says that his or her experience has been that often insurance does not cover genetic testing and genetic counseling. (S.L. ***) Yes, that's an experience that many of our providers find, as well. There's great fluctuation in Oregon, as well as in other states, between policies and between providers. Both in Michigan and here in Oregon we're working to get some consistency and have the insurance companies follow those evidence-based guidelines, but for those who don't have that work being done in their state right now, there is one option for underinsured people who qualify for testing and that's a group called Cancer One Source. They will subsidize for the underinsured who qualify for testing some of their co-pay or other amounts and that's available nationally So, Cancer One Source. Myriad also offers, for the uninsured, testing at reduced cost or free. The paperwork is perhaps arduous, but well worth it for those who qualify. (H. Koh) Dr. Khoury, do you want to add more on this one? (M. Khoury) I think Summer is right and there is large-scale fluctuation from state to state about coverage. Just one piece of information, that the consistency with the USPSTF recomendation on BRCA1, that's the G-1 goal, would require coverage of genetic counseling of women with certain types of family history, but does not necessarily extend to the testing. So, it's the first step in a process and, you know, after the counseling, there may or may not be testing. (H. Koh) Great. Dr. Clancy is going to comment, too. This is a good question. (C. Clancy) Just to chime in on this a little bit-- the current recommendation on the books for BRCA1 and 2 was published, I believe, in '05 or '06. So that predates the Affordable Care Act, in which case the Task Force was focusing on science and people could debate the science and so forth, but whether or not the test was covered was... they could be implicit and not as specific and concrete as now that their recommendations are directly linked to ACA provisions. That was very important feedback that we've gotten from a variety of groups and, in particular I think, confirmed the wisdom of the Task Force in engaging stakeholders very early in the process. So I can't possibly tell you... I was going to say, I'd have to shoot you... but that isn't it. I actually haven't seen the draft recommendation and I do believe that they are still working on it as we speak, but I can tell you that this issue is at the forefront of their brains.