New Research on Improving Patients’ Quality of Life and Access to Cancer Care

Last Updated: May 11, 2018

Dr. Daniel Hayes discusses new cancer research highlighted at ASCO’s 2016 Annual Meeting, covering individual studies on improving patients’ quality of life and access to care. The topics covered address black women with the BRCA gene mutation and preventive cancer surgery, and cancer drug affordability worldwide.  


Cancer.Net®: Doctor-Approved Patient Information from ASCO®

Cancer Research News from the 2016 ASCO Annual Meeting

Improving Quality and Access to Care

Monday, June 6, 2016

Daniel F. Hayes, MD, FASCO, ASCO President, 2016-2017

Daniel F. Hayes, MD, FASCO: ASCO used to be a meeting that you went to to present your new therapeutic results. In fact that's really how it started, is how best to treat people. Our original founders-- about 15 or 20 years ago, illustrating the maturity of our field, we started worrying about taking care of people after they had cancer, instead of just treating them while they had it. And I think this is something we really should be proud of, and ASCO really is proud of it. In fact we started the Survivorship Symposium, we've started a Quality of Care Symposium, we're really doing things besides just giving drugs to people. We're actually taking care of people, and that's what we should be doing as doctors. So there are a couple of pretty interesting things along the way here. In this week's meeting, one of them relates to women who are known to have BRCA1 mutations, or BRCA2  mutations, which are of course germline mutations that increase your susceptibility to breast and ovarian cancer. The standard of care for these women is - assuming they wish to have it - prophylactic mastectomies and prophylactic oophorectomies, because they're very likely to get breast, they are very likely to get ovarian cancers, and we know that doing prophylactic surgery decreases the chances of dying of those two cancers. This is a study out of Florida in which they looked at whether or not women who  were known to be BRCA1 or 2 positive, which means they were in the medical system or they would never have been referred to have genetic testing in the first place. Went ahead and took advantage of those standard of care recommendations. And it was very interesting, white women and Hispanic women tended to 85-90% of them had prophylactic mastectomies and prophylactic oophorectomies but African American women, tended not to as much. It was about 65%. In fact, actually only about a third of those women had prophylactic oophorectomies. End of study, end of abstract.

But as Bernie Fisher, former president of ASCO and one of the great giants in our field used to say, "The hallmark of a good study is it asks more questions than it answers." And this has immediately raised issues about why. It can't be access to medical care because the women were already in the medical system. So is it cultural? Well, what does ASCO do?  We educate people very well. If we can help them understand the importance of having this, great. Is it socio-economic? Is it that these women, even though they're in the medical system, can't take the time to go have the therapy that they should have because they've got daycare problems or work problems, or a number of other issues? If that's the case then ASCO should help address those issues as well. We advocate for our patients very well, so I think this abstract really raises some very interesting questions that I believe we can actually get to with our new initiative CancerLinQ. So CancerLinQ is going to be a database that will sit below the EHRs of our practices and allow us to collect the information and data and see if we can confirm this observation, and get more granular into why this is happening, and whom it's happening. As of this meeting, we have 750,000 cases in eight van-guard practices in CancerLinQ. We have over 50 other practices who want to sign up, or are already in the process of doing so. CancerLinQ  is the real thing, it's going to happen, we're very excited about it, and it's going to change the way we look at patients, it's going to the way we practice, it's going to change the way we do research, and this is exactly the kind of question CancerLinQ is built to ask. So we're pretty excited about that. One of the most pressing issues in medicine, and especially oncology, is the price of drugs. Drug prices have gotten increasingly more expensive for a number reasons, many of them quite legitimate, it takes a lot of money to get a new drug on the market. We have an enormous number of new drugs, it's very exciting. We're treating patients better than we ever have before, but they're expensive. And if it gets to the point that they are so expensive that our patients can't afford to get them, then they don't do any good. Medicine does no good in a bottle, it's only does good in the patient. So we have got address this. ASCO has indeed began to address this. 

We've worried about the cost of medicine, we've worried about he cost of care and general, and we've taken this to the point of the ASCO Value Framework. We're really proud of this. It was first published a year ago, and just re-updated in the last two weeks. In fact it was just published this week of the Revised ASCO Framework that helps a patient talk to his or her doctor about the net health benefit of the therapy, the toxicities and the efficacy of the therapy, related to what that patient will have to pay out-of-pocket. Not what society has to pay, but what that patient has to pay out-of-pocket. And that gets to the heterogeneity of what patients have to pay out-of-pocket. Two patients look exactly the same, one has health insurance A, one has health insurance B, they may have completely different out-of-pocket costs. Two patients, one in the United States, one in Great Britain, one in France, one in India, one in Japan, all of those may have very different costs to them and frankly to their society. This abstract brings up issues as whether drugs cost the same no mater where you're treated, and it turns out they don't appear to. It appears that drugs are differently priced in different countries. We've known that, that's not new, but this delves into it a little deeper. It also begins to get into affordability. So an expensive drug in the United States may be a completely unaffordable drug in another country, even if it's cheaper. So we have to really get to how do we get these drugs into people in a way that's affordable, cost efficient, but still allows ongoing development of new drugs, we don't want to get stuck in 2016 medicine, we want to keep moving forward but we have to do this carefully and thoughtfully. And this abstract I think will allow us to begin to get a handle on how drugs are priced in different countries and whether there is a reason for that and whether we can begin to assess what the reasons are and make these drugs affordable, make medicines affordable, take better care of our patients, that's what ASCO is all about. Our whole point here is, what's best for our patients? And this abstract's going to help us get there.

[Closing and Credits]

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