Breast Cancer Gene: Why Most Women Can't Do What Angelina Jolie Did

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FILE - This Feb. 14, 2012 file photo shows US actress and director Angelina Jolie addressing the audience after premiere of her movie,
Amel Emric, AP
On Tuesday, Angelina Jolie drew headlines with her announcement that she has undergone a preventative double mastectomy. As she wrote in the pages of The New York Times, a blood test revealed that she carries a damaged BRCA1 gene -- a defect that greatly increases the odds of a woman getting breast cancer. Facing what she said was an 87 percent chance of developing the disease, she decided to undergo a prophylactic double mastectomy, an operation that reduced her risk to 5 percent.

Jolie's decision to have a prophylactic mastectomy before any sign of the cancer had manifested, and her willingness to openly discuss it, is shedding fresh light on breast cancer -- as well as on the very real problems with how the American medical community deals with this disease. Every step in Jolie's process -- from the tests that uncovered her faulty gene, to the operations she underwent to protect against it, to the post-surgery reconstruction -- highlights shortcomings in the American health care system, and inequities in the care that most Americans receive.

To put it another way, when it comes to breast cancer care, your health may often be trumped by your finances: even if your best bet is to follow in Jolie's footsteps, you might not be able to afford the screening, care and surgery that may have saved her life.

Genetic Testing

The first issue is the test. The BRCA1 and BRCA2 tests, which may have saved Jolie's life, cost $3,000 to administer. Donna Faranda, helpline coordinator for Share Cancer Support, notes that there are four parts to the genetic test, but that many insurance companies only cover the first two. Paying for the last two parts is where things can get expensive.

Under the Affordable Care Act, getting the full genetic test for breast cancer will soon become a lot less expensive, at least under some circumstances. Starting in August, insurance companies will have to cover the tests, without cost-sharing, if a health care provider determines that doing so is "appropriate" -- which is to say, if the women have had breast cancer, have a family history of breast cancer, or otherwise seem particularly high-risk. In other words, the final decision on whether or not to test will come down to a doctor, nurse or other health care provider.

While it's frustrating that the ACA leaves this open to interpretation, it isn't hard to see why it does: Fewer than 1 percent of women carry flawed BRCA1 or BRCA2 genes, and -- according to the National Cancer Institute -- flaws in those genes only account for between 5 and 10 percent of breast cancer cases. In other words, the (very expensive) test will only detect a small portion of potential breast cancer victims.

Who Owns Your Genes?

The equation would be a lot different if the genetic tests were cheaper -- and therein lies another tale. Myriad Genetics, the company that produces the breast cancer tests, patented BRCA1 and BRCA2 in the late 1990s. According to critics, this effectively shut down scientific research on the two genes -- and gave the company a highly lucrative monopoly on testing. Currently, the Supreme Court is hearing arguments on the case; in June, it's set to determine whether or not a company can claim a patent on a gene that naturally occurs in every human body.


But while the ACA and the Supreme Court are potentially working to lower the price of BRCA tests, a full genetic scan remains beyond the means of many women. Faranda notes, however, that there are ways of getting around the high cost of genetic tests. Universities, hospitals and government researchers regularly conduct clinical trials to study breast cancer or test new treatments -- and participants in these trials often receive genetic testing free of charge. To find a trial, Faranda advises looking at the National Cancer Institute's clinical trials page, the National Institutes of Health's clinical trials page, or BreastCancerTrials.org, a website that works to connect women concerned about breast cancer with trials that can help them.

After the Test

But getting tested is only part of the problem. After a woman is diagnosed with a faulty BRCA1 or BRCA2 gene -- or after a tumor presents itself -- there's still the matter of treatment. Studies have shown that prophylactic mastectomies, like Jolie's, can reduce the risk of breast cancer by more than 90 percent in women with flawed BRCA 1 and 2 genes.

Preventative mastectomies can also greatly reduce health care costs. Andrea Rader, a spokeswoman for Susan G. Komen, points out that a double mastectomy, without complications, can cost as little as $15,000. But after cancer emerges, the prices rapidly rise -- sometimes to $40,000 or more -- as doctors have to deal with more extensive reconstructions, metastasized tumors, and other complications.

While some states require insurers to cover prophylactic mastectomies for high risk women, there is no federal law mandating that they do so. Some insurers -- like Aetna -- cover the surgery; others don't.

The situation, unsurprisingly, is much worse for uninsured women. Rader notes that many women who don't have insurance also don't qualify for Medicaid or Medicare. This can have a devastating effect on diagnosis and treatment. "If you're not insured, its $300 for this and $200 for that and $3,000 for the other thing," Rader explains. "It makes you reluctant to get the help you need." And, in the case of breast cancer, delays in treatment can translate into complications and a higher mortality rate.

But even if everything works out -- if a woman is able to get genetically screened, and if she is able to get her insurance to pay for a prophylactic mastectomy -- many women don't receive the excellent reconstructive work that Jolie had. A big problem, says Faranda, is that many women aren't aware that they have a legal right to reconstruction: By law, any insurer who pays for a mastectomy must also cover reconstruction. Needless to say, insurers are often not eager to tell their customers that they have free access to an expensive procedure.

Ultimately, as Jolie herself notes, the high cost of health care makes early diagnosis "an obstacle for many women." But, while most women at high risk for breast cancer don't have access to Jolie's finances, as Faranda and Rader both point out, there are numerous resources available to help. The key, both for those who have been diagnosed with breast cancer and those at risk of developing the disease, is knowing what your community, your insurer, your hospital, and your doctor can do to help you.

Bruce Watson is DailyFinance's Savings editor. You can reach him by e-mail at bruce.watson@teamaol.com, or follow him on Twitter at @bruce1971.

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62 Comments

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Jessica Hubbs

People are going on and on how brave Jolie was to do this. Bullsh!t. She was scared poopless and didn't want to risk getting breast cancer. The brave thing would have been to say "ok, I have the risk factors, I'm going to wait and see if anything comes of it". What she did as let her fear take hold and throw money at it to make it go away. I have stage 4 breast cancer and get chemo every 21 days, I can say what I'm saying because I'm living it. She was able to do what most women can't: throw a bunch of cash at it. Who took care of her kids while she recoveres? Brad (and an army of Nannies)? More money. Too bad she doesn't live i the real world. Then she would be making the really tough choices.

September 08 2013 at 3:03 AM Report abuse rate up rate down Reply
OMGOMGOMG

@ Harriet Beaumont. Are you an 11 year old boy? Do you honestly not see any difference in importance to your survival between breasts and a heart. It's obvious that the brain is functioning at a diminished capacity, but how long do you think you would survive if your heart were removed? How long would you survive if your breasts were removed. Silly women my arse. You are so far removed from the reality of the conversation you may as well be a brood mare or a stripper. Your boobs serve no anatomical purpose. If you're a Mom and you choose to breastfeed then you need boobs. Otherwise, no one needs boobs. Everyone needs a heart. Even in the UK, boobs are not essential for human survival. A heart is. Until I read your comment, I thought a brain was essential too. You proved me wrong.

September 03 2013 at 8:24 PM Report abuse rate up rate down Reply
Jim

the other women aren't stupid

May 16 2013 at 9:03 AM Report abuse rate up rate down Reply
dxl504

Thank you I already said this. The only way what she did is going to save other womans lives is if she pays for their testing. Please!!!

May 16 2013 at 9:02 AM Report abuse rate up rate down Reply
1 reply to dxl504's comment
OMGOMGOMG

This news article is not limited to US citizens. Women all over the world are learning about this risk, the procedures for testing and treatment options. I live in a country that taxes its citizens so heavily, every dime we earn until the end of July goes to taxes. Our healthcare is paid by our taxes and preventative procedures are usually the preferred course of treatment, as they are cheaper than treating an illness and all the aftercare associated with it. Just because your insurance companies are only focused on their bottom line, doesn't mean women worldwide face that same obstacle. Angelina Jolie is very fortunate to be able to do this in the US, but her speaking out is raising awareness worldwide. The biggest concern in my country is the wait time for procedures and tests. Not a financial barrier.

September 03 2013 at 8:31 PM Report abuse rate up rate down Reply
Sun

So, they might cover a medically necessary BRCA test that is 3 grand, but will not pay for something else that can kill-a less than 3 hundred shingles vaccine.

May 16 2013 at 5:34 AM Report abuse rate up rate down Reply
swl707

What makes any of you think that Obama care will take care of you and provide
these tests and surgery. This will be determined by a small panel of socialist
and the IRS not your doctor. Wake up!

May 16 2013 at 3:38 AM Report abuse -3 rate up rate down Reply
setanta54s_back

reading the commentary HERE,
ONLY
ILLUSTRATES
HOW
obummer got elected TWICE.

this article does NOT STATE that all and any WITH THIS GENETICS GETS A DAMN THING.



Under the Affordable Care Act, getting the full genetic test for breast cancer will soon become a lot less expensive, at least under some circumstances. Starting in August, insurance companies will have to cover the tests, without cost-sharing, if a health care provider determines that doing so is "appropriate" -- which is to say, if the women have had breast cancer, have a family history of breast cancer, or otherwise seem particularly high-risk. In other words, the final decision on whether or not to test will come down to a doctor, nurse or other health care provider.

uuuuuuuuuh the final decision on WHETHER OR NOT TO TEST will come down to a doctor,nurse (???total BSright there)
OR
OTHER
HEALTH CARE
PROVIDER
as in your INSURANCE...........................helllllllooooooooooooooooooooooooooooooooo
wake the F up.

May 15 2013 at 9:56 PM Report abuse -2 rate up rate down Reply
1 reply to setanta54s_back's comment
Razzal

Your insurance company is not a health care provider. You should be happy the health care act only got as far as it did. We are the wealthiest country in the world yet we cannot take care of our own people, while countries that we consider ourselves better than do it for theirs. I do not want to hear crying about how there are so many flaws in x country's medical system or how long the wait for a procedure in y country is. It is not something that could even be compared because the systems would not be the same. Some people are so ignorant with their arguments and have nothing but crackpot half-cocked theories they are parroting from faux news. Please go back to some sort of school and learn to think for yourself and to apply logic. Guess what if we paid for peoples preventative health care overall health care costs would drop because it is cheaper in most cases to prevent then treat but no, that is not America, we do not help each other. We just claim to follow jesus(who as the bible shows would help anyone) yet we are unwilling to pay anymore in taxes to help anyone cause we need our money and we need more of it. The conservative hate everything, cry foul on everything and complain about anything different viewpoints are on their way out, last two elections have said this, yet the same tune is sung and it was things will change in 2012 cause no one will reelect Obama and now the tune is 2016. Guess what, people are tired of the scare tactics and misinformation, they have the internet and can check things out that are said and they find out when they are not true. Honestly not sure why I bothered responding to you cause I know it will do nothing to change the ignorance and by your typing and grammar, I will assume there would be a lot to change, and just so you know, I am a fully insured, working American and I still think we should help people cause I am not a greedy lowlife.

May 16 2013 at 5:22 AM Report abuse +1 rate up rate down Reply
ehamlin906

I am one those who would love to be able to afford this testing. In 2014, when the ACA is in place, I will finally be able to have this genetic testing. Now, even though I am considered high risk, both of my parents died from esophageal cancer and my mom had the HR2 mutation, I am at the mercy of my insurance company. When I become eligible, I shall have these tests. Even without these tests, my doctor has advised me that I have a 75% chance of having breast cancer, ovarian cancer, as well as esophageal cancer. Those are not good odds for me. They would pay for treatment, but right now, they wouldn't pay for the genetic testing, a mastectomy, reconstructive surgery, or a hysterectomy. The treatment for cancer is far more expensive as well as debilitating. I would rather go with the preventative measures that in the long run would be less expensive, and would reduce my odds of cancer to 5%. I don't trust my insurance company to have my best interst at heart. I do trust my doctors and I can't wait to have the opportunity to actually have more options to live a longer and healthy life.

May 15 2013 at 9:07 PM Report abuse +1 rate up rate down Reply
2 replies to ehamlin906's comment
setanta54s_back

better REREAD the swill via aol on these tests and WHO MIGHT get it.

May 15 2013 at 9:45 PM Report abuse rate up rate down Reply
Sun

is there are reason, with the percentages (at least after obtaining a second opinion from another medical center), if the percentages are correct , must you wait for a test to confirm what you already know? I seriously would want another opinion before going on but,,, Don't smoke, Don't drink. Eat well, get in excellent shape and get enough rest. Just because there is cancer in the family, does not necessarily mean that you're the next target, thankfully. If your physicians say that you are a candidate for surgery now, do you need to wait for the test for the gene?

May 16 2013 at 6:03 AM Report abuse rate up rate down Reply
setanta54s_back

another GIGANTIC LOAD OF BS and OF COURSE
OBUMMER CARE'S gonna fix IT.

read carefully...........Under the Affordable Care Act, getting the full genetic test for breast cancer will soon become a lot less expensive, at least under some circumstances. Starting in August, insurance companies will have to cover the tests, without cost-sharing, if a health care provider determines that doing so is "appropriate" -- which is to say, if the women have had breast cancer, have a family history of breast cancer, or otherwise seem particularly high-risk. In other words, the final decision on whether or not to test will come down to a doctor, nurse or other health care provider.

and exactly WHAT IS ANOTHER HEALTH CARE PROVIDER ???? the INSURER.
same as this load of IT calls IT
HEALTH CARE.........
ALL IT DEALT WITH WAS SCRREWING U VIA INSURANCE RATES ETC/

May 15 2013 at 8:39 PM Report abuse -3 rate up rate down Reply
1 reply to setanta54s_back's comment
ehamlin906

If you were living with this Sword of Damocles over your throat, you would not have posted this. Many of us have been diagnosed as high risk, yet our insurance, not our doctors get the last decision. I can't wait until the ACA is in effect. I can have the genetic testing and work with my doctor to find the best preventative care for myself. Right now, it's something hanging over me, I am high risk because of family history and a known mutation on my mom's side. Perhaps you have not had to deal with a loved one with cancer. I have, both of my parents. It was an awful thing. I would like to spare myself as well as my family from watching me suffer and then die because the insurance companies care more about profit than the health of the people who are paying for coverage. My doctor's, ( three of them) wrote appeals when I was denied, and yet I am still denied. If I lived in the UK, Cuba, or Canada, I would be covered. I pay for my own health insurance as well. Instead of using my premiums to keep me healthy, they would rather use that money to give the CEO a bonus. Somehow, that just doesn't seem right.

May 15 2013 at 9:15 PM Report abuse +1 rate up rate down Reply
2 replies to ehamlin906's comment
setanta54s_back

THE BS POSTED ON OBUMMER CARE PAYING FOR THIS
IS THE PROBLEM and the DISAGREEMENT PRESENTED-
NOT YOU OR YOURS.

so YOU HAVE a predisposition for X Y or Z--and ?
YOU ASSUME that only a MINORITY out here have dealt with CANCER among OTHER THINGS-
and AGAIN
that IS NOT THE ARGUMENT.

simply ASSUMING THAT YOU................will get ANYTHING
disease SPECIFIC
and / or DUE TO YOUR DNA....is not guaranteed.

read the scatology again.

May 15 2013 at 9:50 PM Report abuse -1 rate up rate down
Harriet Beaumont

If you lived in the UK you wouldn't be getting advised to cut out important parts of your body!! The only doctor you need is a psychiatrist! Noone wants to suffer from a horrible illness, but you can't just go around chopping bits off! Almost everyone in my family have died in their 50's, most of them from heart disease, should I get my heart taken away? :-D You are one of these healthy people who want something wrong so they can complain, you can't leave well enough alone, silly women.

August 14 2013 at 5:28 PM Report abuse rate up rate down
Laurie's puter

She may not have done it for the attention... But she had to tell us why? What will us knowing she has enough money to get this done... Help us? Some things to just remain as a family matter.

May 15 2013 at 8:20 PM Report abuse rate up rate down Reply
2 replies to Laurie's puter's comment
Purple Shell

If her telling us about her surgery saveseven one life, then it is worth her telling us. It has nothing to do with her having money. There is help out there for all if one just looks.

May 15 2013 at 10:21 PM Report abuse rate up rate down Reply
OMGOMGOMG

Angelina Jolie news is international news. Not everyone lives in the US, and many of us pay taxes out the wahzoo to have access to free healthcare. Where I live, preventative medicine is preferred. Removing a lump of fatty tissue and milk ducts that will no longer be needed to suckle a baby is cost efficient when compared to chemotherapy, radiation, hospitalization, and in the worst case scenario, palliative care. Knowing that this is an alternative to developing cancer that will probably metastasize into your bones or lungs could prevent many women from the horror of cancer treatment.

September 03 2013 at 8:08 PM Report abuse rate up rate down Reply