Evidence-Based Oncology

Genetic Testing Should Come With Counseling: American Cancer Society CMO, Supreme Court Plaintiff Among Experts Who Warn of Consumer Risks | Page 4

Published Online: December 13, 2013
Produced by Nicole Beagin
Berger: I’d like to concentrate on costs. You hate to have the conversation, but cost is the 800-pound gorilla in the room. We have to be conscious of the limited resources out there. With the increase in utilization and the increase in work that’s being done in the labs, what are the current costs that we’re seeing associated with genetic testing? Is it going up? Is it going down? Is it staying the same?

Matloff: In my opinion there are many, many people having genetic tests that they don’t need, and we also have many people who are getting the wrong test or their test result is being misinterpreted. Then, they’re having the wrong surgery or they’re getting a breast MRI 3 times a year when they don’t need it. So it’s not only the genetic test, but it’s the downstream cost—the wrong surveillance, extra surveillance, the wrong surgeries. At the same time, there are many patients who need genetic testing, but it’s not being offered. It’s not being offered to their family members. So there’s room to do this much more efficiently. Now with the Supreme Court ruling, I think we can also order the right test and order it more cheaply. I see a lot of room for positive change—to decrease our costs and to test the right people for the right things.

Finley: I made a comment before about the 15% annual increase in costs. Cost has 2 elements—unit price and utilization. I think that with the Supreme Court decision, the unit price is going to go down, certainly for BRCA, but probably for other genetic tests as well. The utilization is in 2 areas. First, as has been said, many people are not tested who should be. So in that way, genetic tests are underutilized. On the other hand, you have established tests that are overutilized, by the worried well for example. There are genetic labs that are coming up with new tests that have no proven value, but they have direct-to-consumer advertising, as well as relationships with doctors’ facilities and other entities to get their particular test off the ground. So from the payer perspective, I think it’s important to address all of these things—the cost and the underutilization by people that should be tested, and the overutilization by people who shouldn’t be tested, and tests that shouldn’t be done.

Berger: Are any of the rest of you seeing this? That’s a good point that there be overutilization, but there may be underutilization as well. … Cost comes into play acrossthe board. Does anyone else want to comment around current costs and the appropriate resources?

Nagy: One place where inappropriate testing occurs is not just testing the right person for the right condition, but also using the right test. Once a mutation has been identified in a family, the cost to test unaffected relatives or relatives who may be at risk drops significantly. So, the first test may cost between $2000 and $3000 to identify the mutation in the family, but once that mutation has been identified, other people in the family can be tested for $400 to $500, depending on the lab used. We call that cascade testing. In our outside referrals, when genetic testing has been done by a provider who does not have formal genetics training, over and over again that comprehensive several-thousand-dollar test is being ordered after the mutation has already been identified in the family. For every single person tested in those families, the excess is $2000 to $3000. So, that’s another place I think where the costs can really get out of hand.

Berger: Dr Finley, I want to go back to you for a moment. ... What are you seeing from Cigna’s employer clients around this? Is there conversation? Is there interest? Is there concern?

Finley: We have not heard a lot of feedback from the employer groups. There’s 1 large employer group that always has questions when we introduce a new program, and we’ve heard from them. … But if we’re going to get a lot of questions and pushback or perhaps a pat on the back, I don’t know, it hasn’t occurred yet. It may not occur until they have cases where there are issues, and they come to us and say, “What about this?” They get more attention once implementation is actually under way. But so far it’s been minimal.

Berger: Are any of the rest of you hearing from the employer market or other constituencies?

Brawley: I have not heard from the employer market, but I should note, we have heard from women who have been tested for these genetic mutations who encounter life insurance discrimination. It’s illegal to discriminate on the basis of health insurance, but there are other types of insurance that they’re having difficulty getting because of a non-genetic mutation. This

is something that people frequently don’t think about until after they get tested. In some instances it’s some of these mutations of unknown significance that are causing people to have difficulty getting insurance.

Berger: It will be interesting to see if the same way we’ve seen discrimination issues in the employer market and in the medical insurance market, if this eventually extends to the life insurance market. Can we talk about the errors in the genetic test result interpretation? In some cases by having genetic counselors, some of these issues with results of unknown significance can be addressed, but can we talk more broadly about the errors in the results interpretation? Dr Brawley, has there been a lot of conversation at the American Cancer Society around this? Is there concern?

Brawley: There’s huge concern that people don’t understand the concept of risk. They don’t understand what is a 10% increase in relative risk versus an 80% increase in relative risk.

Berger: Is there a concern, not just in interpretation, but that the testing companies and the tests out there are inconsistent? There’s been talk in the past that if you get the test from 2 different places you will get 2 different results.

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