All In   |  May 14, 2013

The prohibitive cost of genetic testing

Chris Hayes looks at the high cost of genetic testing with Congresswoman Karen Bass and Lizzie Stark.

Share This:

This content comes from Closed Captioning that was broadcast along with this program.

>>> we're talking about angelina jolie 's revelation that she went a preventive double mastectomy. joining me now, caroline bass. and -- how the breast cancer gene changed everything. graet to have you here. i want to begin with you. having gone through this, what was your take away? your reaction to it?

>> first of all, i just really feel for anybody who has to make this decision, make the call to have a preventive double mastectomy, so my first reaction was sympathy. i also think that it's great. it's going to be great for women who are thinking about testing for this gene. this raises awareness about breast cancer and can help women to decide whether taking the gene test is right for them. of course, in consultation with a doctor and i also really liked what she said about not losing her femininity. i think that's a really important message. not just for women who have had a preventive mastectomy, but for many women , that there is life after.

>> you found yourself in position, you found you had this. i should be clear, i was slightly -- on this gene. everyone has that, the it's a mutation, a fairly rare mutation. i just can't imagine -- what was your head in that decision? it seems like the starkest kind of risk management for an individual to face.

>> there's the decision to test and the decision about what to do about the results that you get. for me, i come from a family with a lot of cancer in it. my mother had cancer at 30. her mother had cancer in her 30s and again in her 40s and ovarian cancer in her 50s and both of her sisters died of cancer . one quite young an the other survived breast cancer to die horribly of ovarian cancer .

>> it was just so stark looking around your family.

>> every woman on my mother's side of the family had either had her breasts taken off voluntarily or because she's had cancer . when you have that kind of odds, it really does feel like cancer 's comeing for you and you have to be extra caution.

>> i couldn't help but note $3,000 is just the cost for the genetic testing that would, angelina jolie underwent and that lizzie underwent. this is not something a lot of people can afford and it's not necessarily covered by insurance.

>> absolutely and let me just say to your guests, i really think she's very brave and i really appreciate her coming forward and talking about this. when i watched the news this morning, the first thing that came to my mind, i lost two matern maternal aunts to breast cancer and i was like, wow, maybe i could get that test. at 3,000, that's just the screen. then the you're talking about the mastectomy and most important for women is the reconstructive surgery that comes afterward and i am sure that really is a barrier in three areas. the dos of the screen, the surgery and then the reconstruction. so to me, as we hoo move move forward implementing health care reform , i want to look forward to the day that all women have access to this test, the surgery and the reconstruction.

>> it may be worth noting my test was not $303-000. they tested my mother first and only had to look for the part, they only had to look to see if my mutation was the same as hers.

>> white women are five times more likely to undergo the counseling than african-americans. that massive despairty also reflected in the fact black women have a 41% higher rate. there's some real equity issues around this. this, to me, is the most striking aspect. there is a single company that owns this gene. and if that, it sounds like i'm misspeaking. there's a single company, even though they did not make this, mira genetics has patented the gene. they have claimed they can patent this gene. a district court said that's crazy. an argument for the supreme court , we will find out soon, but this is really something that this technology is now in the hands of one company.

>> yeah, that it's incredibly extraordinary. i'm looking forward to seeing what the supreme court decides. my understanding is what they've pat ends, they're arguing you can't patent things in nature, so they haven't patented a whole string of dna, swrus the specific cancer causing mutations.

>> and that's a real question, whether they can do this. congresswoman, this is a case i think you've been following closely.

>> it is and it's a case we're following in the judiciary committee to see what the outcome will be. you know, again, you would think that something that would save lives in such a manner really should be opened up an there should be access to everyone. you know, it's difficult when you're thinking about a disease that you would hold on to a patent for x number of of years before you provide access to the general public . it's something we should address in the long-term.

>> there's been a big question and you're researching this, how much are we going to see this increase over time ? we've already seen a huge amount of increase. are we going to see an explosion in this and testing like this?

>> i think so. we're learning more about genetic causes of disease every day is is my impression. there aren't just genes for breast cancer . there are genes that can raise your risk of alzheimer's or colon cancer or -- i think what we're seeing now with brca is going to become much more widespread. i think this is part of the future of medicine and it's complicated and uncertain and that's one of the really problematic things of genetic testing .

>> that you, yourself have experienced and had to act on. looking down the barrel of genetic probability is something i think a lot of us are going to be experiencing for ourselves. thank you both so much. that is all in for this evening. the rachel maddow show starts now.