Angelina Jolie Effect

jenrio

In one year, I expect the prophelactic mastectomy rates would double if not triple.   I also expect the rates of women asking for BRCA tests to double and the maker of BRCA tests is going to have a stellar year.

Here's why I am not thrilled:   

1.  BRCA tests are expensive and provides very little information for either research or treatment.   96-99% don't have these known BRCA mutations, 10% would develop BC anyway.   Full gene sequencing provides much more information for research and treatment someday, and its price is just a bit more than BRCA tests.   Yet I see NO articles making this point.     Taxpayers and insurers have NO obligation to foot the bill for BRCA tests, but every reason to support more research in full gene sequencing.

2.   Breast cancer, specificly metastatic breast cancer has no cure.   This is the foundamental justification for Angelina's decision.   More money needs to go to research and more research into metastatic BC, not into unnecessary and expensive BRCA gene tests.   Again I do not see anyone making these point.

Angelina Effect could be really positive if Angelina Jolie could direct attention to support for MBC research.   Totally wasteful if it just ends up with more women clamouring for the outdated BRCA gene tests, and getting a false sense of security when BRCA tests show negative for a few known mutations and forget about the threat of MBC.

jessica749

I'm not sure why you say that the BRCA tests are unnecessary.  For people who have the mutation discernable through the test, it is certainly worthwhile. Just cause we can't genetically test for all bc risk mutations, doesn't mean we shouldn't be doing it for these known ones, however limited the number of people it helps. If it were you, then you'd think it was pretty necessary and important.

I also think AJ has done a tremendous thing.  I think for young women who may have this specter in the family, there's a tendency to bury the head in the sand.  I think AJ facing it head on and very publicly will help some of those people do what they need to do.

You and others seem to think that the average person will start demanding, and getting, all sorts of unnecessary genetic tests. Remember, a certified genetic counselor meets with people to assess genetic risk before genetic testing gets done. If there is no real risk, then there will be no recommendation for genetic testing. For example, I can't imagine a genetic counselor advising a woman that she is at risk for BRCA if her mother had bc at age 64. It just is not part of the guidelines for risk.  

Full disclosure: I speak as someone who has been advised to go to genetic counseling,a nd I have been through it.  They do not do this willy nilly.  Genetic counselors do not just take blood and test you for eeny, meeny, miney, mo.  It is not a "let's look for a haystack in a needle" or 'throw a dart at the dartboard". It's much more deliberate and considered.

Anonymous

It IS very deliberate and considered as you said, Jessica.

I went in for genetic counseling following my very suspicious call back mam last summer. I'd been on high surveillance due to family history for years. My BS had been recommending the testing for a long time. The counselor spent quite a bit of time with me working up a family tree that went back 3 generations on my mom's side and two on my dad's. while waiting for the results of the genetic testing my positive biopsy results came back. BRCA1, 2 and BART were covered by my insurance though I was warned that BART might not be and given a max amount I would be charged if it was not covered. I tested negative for any gene IDENTIFIED AT THIS TIME and am grateful for that, mainly for my daughter's sake, though with a mom, both grandmas and both great-aunts I'm sure she will someday walk the high surveillance tightrope too.



Also, as expensive as the genetics testing is it doesn't come close to the cost of all of my mammograms, MRI's and biopsies over the years.

barsco1963

I agree that genetic counselling and the BRCA testing should be available to all high risk women/men. Unfortunately due to the high cost of such testing, not everyone can afford it. Currently with Myriad Genetics holding the patent on the BRCA genes, the outrageous cost will always be that - outrageous. And they will continue to reap the rewards unless something is done  to take that right away from them.

I don't believe that everyone will be rushing to get the testing done. Sure there will be an increase, but one does go through extensive counselling after it is deemed that they meet the criteria. One cannot walk in off the street and request the test be done just because they are curious. I am glad that AJ's story has brought about more discussion regarding the cost of the testing. And I will be paying close attention to the ruling from the Supreme Court which is to come this summer regarding the patent. I have attached a short article which I found helps to explain a bit about it.

http://www.bcaction.org/2013/04/03/brca1-2-gene-patenting-debate-reaches-the-supreme-court-why-it-matters/

jenrio

Science is advancing at a clip that a full-scale sequencing of human genome could be available for <$1000 within a few years.    We need massive investment on

a.  How to make sense of the data:  BRCA tests are very very limited and have high false-negatives.   ie, many women will be told "No you are not at risk" when they may still be at risk due to lack of understanding of full genes.    Lots of work needed

b.  How to make effective MBC treatment,  so preventive mastectomy, preventive mammography, or preventive MRIs is unnecessary to actually save lives.    

Angelina Jolie Effect of increasing BRCA tests and increasing preventive mastectomies does not seem to contribute to either of these goals.  

Yes, it may save some lives, but we will never know who actually are saved, or how many at what cost.    It's like $4Billion digital mammography upgrade (that does not increase accuracy) and giant push for women to get yearly mammograms (when women with dense breast are given false negatives and false sense of security).      

Another expensive diversion from the real prize:  Cure of MBC.    Just like in year 2000, many thought the BC would have the cure within 10 years.   Yet millions of mammograms and MRIs and billions of dollars later, we do not have a cure.   My nightmare is that in 2025, we look back and found out billions of dollars went to preventive mastectomies and BRCA testing,  yet women still are dying from MBC and young women like Angelina Jolie still have to have preventive mastectomies to avoid getting breast cancer.

In short, I applaud Jolie for her rational decision.   But the sad reality of MBC behind her decision and the need to massively invest in cutting age medical research in MBC is the real take-away lesson for the society as a whole.

jessica749

Does anyone actually know of someone who has a suspicious breast cancer history, where a genetic counselor has recommended testing (ie 3 generations of bc where at least one of the bc's are before age 50) where they have insurance, and the insurance REFUSED to cover it? I think if you meet the guidelines, you can get it, No?I'd be curious what the specifics of the family were, and what insurer they had.

SpecialK

Actually I had BRAC testing done at the request of my BS because I was adopted and had no access to family history (to determine lumpectomy or BMX) with no genetic counseling whatsoever.  My insurance is through the military, they paid for this testing in 2010 after I had been diagnosed, but they now will not pay for for anyone - diagnosis or not. 

jessica749

So you had no genetic counseling, they just paid for it. I wonder if someone had a suspicious history, AND genetic counseling where it was recommended all in accordance with national recommended guidelines, if the military would deny it. As the federal us govt, known for providing half way decent benefits at the least, I find it hard to believe!

SpecialK

Even if you are diagnosed with breast cancer the military insurance does not cover it any longer for active duty or retired, to my knowledge.  Here is the paste from their website - note the tests NOT covered.  As I said, they covered the test for me but that was in 2010.  I had a 20-year suspicious history, all of my treatment was in military hospitals.  The BRAC testing was ordered for info that directly relating to surgical options, and I had already been diagnosed. At no point did anyone suggest genetic counseling, and I had already had a complete hyst/ooph 12 years earlier.  I self-elected BMX, as I was a lumpectomy candidate, so uterus/ovaries/breasts are gone - same thing would have been recommended if I had tested positive.  I am happy to have the testing info because I do have two children, but I am not sure how much information a genetic counselor could give me because I can't offer them any information on family history.  Tricare did deny Mammaprint testing of my biopsy sample ($5,000) even though it is FDA approved, saying it was "experimental" and I know of other members with Tricare that have had Oncotype denied.

Genetic Testing

TRICARE may cover genetic testing when medically necessary, proven and appropriate, and when the results of the test will influence the medical management of the beneficiary. TRICARE covers genetic counseling provided by an authorized provider when it precedes the genetic testing.

Examples of tests covered:

• Chromosome analysis for repeated miscarriages or infertility
• Testing for Turner Syndrome
• Chromosome analysis due to genitalia ambiguity, small size for gestational age, multiple anomalies, or failure to thrive

Examples of tests not covered:

• Genetic screening tests
• Paternity tests
• Routine gender testing

jessica749

Not sure how the below squares with retired military people,etc. From the NY TImes editorial board published May 17: excerpt from: http://www.nytimes.com/2013/05/18/opinion/angelina-jolies-disclosure.html?hp

"The health care reform law requires private insurers to cover genetic counseling and, if appropriate, BRCA testing, without a co-payment, in recently issued policies. Medicare and Medicaid coverage for BRCA tests for high-risk women may differ from state to state. Generally, neither private nor public insurance will cover the tests for women whose family history does not suggest increased risk, and that makes good sense. Test results can be unclear and may lead to unneeded surgery or treatments that have the potential for serious harm."

Also, it would seem to me that if the NCI states the following, and it applies to your family, then you have a good arguement for coverage. This is what I mean by a suspicious family pattern that a geneticist may counsel testing for  (below from NCI National Cancer Institute website): 

"The likelihood of a harmful mutation in BRCA1 or BRCA2 is increased with certain familial patterns of cancer. These patterns include the following (15):

• For women who are not of Ashkenazi Jewish descent:
  • two first-degree relatives (mother, daughter, or sister) diagnosed with breast cancer, one of whom was diagnosed at age 50 or younger;
  • three or more first-degree or second-degree (grandmother or aunt) relatives diagnosed with breast cancer regardless of their age at diagnosis;
  • a combination of first- and second-degree relatives diagnosed with breast cancer and ovarian cancer (one cancer type per person);
  • a first-degree relative with cancer diagnosed in both breasts (bilateral breast cancer);
  • a combination of two or more first- or second-degree relatives diagnosed with ovarian cancer regardless of age at diagnosis;
  • a first- or second-degree relative diagnosed with both breast and ovarian cancer regardless of age at diagnosis; and
  • breast cancer diagnosed in a male relative.

• For women of Ashkenazi Jewish descent:
  • any first-degree relative diagnosed with breast or ovarian cancer; and
  • two second-degree relatives on the same side of the family diagnosed with breast or ovarian cancer.

These family history patterns apply to about 2 percent of adult women in the general population. Women who have none of these family history patterns have a low probability of having a harmful BRCA1 or BRCA2 mutation."

jessica749

PS Apparently, the NCI website says there are NO standardized, recommended guidelines for BRCA screening referral,t hey just list the above.

SpecialK

I don't know if Tricare is considered private insurance, it is what covers you if you are active duty and services cannot be provided in a military treatment facility, or retired (retired pay a relatively small premium) and is a federal governmental benefit of military service.  Also, since I am adopted I would not have been able to answer any of the family history questions to know if I had those risks.  I think that Tricare's take may be that so few people have the risk that they would eliminate coverage for it.  They have covered my extensive surgeries and chemo, no questions asked - I have zero complaints and have been very satisfied with how they have covered the necessary aspects of my treatment.

wallycat

I was watching Dr. Oz (taped) the other day and the first segment was on BRCA & testing & reconstruction and Angelina Jolie.

I have to say I was sad at how the information was presented.

1.  The implication was given that BRCA is the ONLY mutation increasing risks for ovarian and breast cancer.  We clearly know that there have been new mutations that have been found and that no family history or mutation can still result in us getting breast cancer.

2.  The reconstruction they showed was not complete, IMHO.  They showed the new tear-drop implant, the outcome (nipples were blurred out, but supposed to be on his website) and talk about the new nipple/skin sparing for a more natural look.  Comments:  That is all great if you do the surgery PRE-cancer, but if you are looking at this information after a dx, no mention was made that some cancers force women to lose their nipples.  Also, they made the surgery sound "easy." No mention was made that you still destroy the pectoralis muscle to put the implant in.  (If I am wrong, please correct me, but my understanding is you still expand the muscle and not simply put the new tear-drop implant behind the skin.)

3.  In my dream world, I wish Jolie would have opted for a flat/unreconstructed look.  It would have really spoken volumes about breasts = sexuality = femeninity ---(in my humble opinion).

As an aside,

I am of Jewish decent...(dad yes, mom no) but not even sure if it is Ashkenazi background.  Since my dad was much older when he had my sister and I, we have no idea what the paternal medical history looked like (as far as I knew, no one has had cancer in my family, but Hitler took so many that who knows if they would have and at what age...)  Dad never spoke much about any of it.

I was a few weeks from turning 50 and again, no known cancers in my family....they insisted I do the BRCA testing.  I wasn't sure what would turn up, but if I had been positive for the mutation, I would have had my ovaries removed right away.  It turned out that I did not have the mutation. 

I understand that there are various levels of testing for the BRCA mutation and mine was the standard (not in depth) test, as far as I know.  My genetic counselor did not do much ...maybe because it was negative.  My insurance covered it.

I was surprised to read that Jolie did the breasts before considering the ovaries since both her mother and grandmother got ovarian cancer and not breast cancer.....but maybe that is on her agenda as well.

dltnhm

I had the BRCA testing with no pre-test genetic counseling. My BS also thought this might be wise considering a grandmother with ovarian cancer.



My insurance - BCBS IL HMO - paid for the entire test.



We should try not to extrapolate from our own personal experience that each woman's experience will be the same.

angielee

My BRCA testing was totally covered, they didn't charge me a penny.  It was negative. I was glad for my daughter.  Angelina's daughter is not so lucky.

Megadotz

Special K, Tricare was  specifically excluded from the Affordable Care Act for some reason.  The issue came up with a friend who found out  that Tricare  doesn't have the coverage for children up to age 26.

jenrio

The poster who said Angelina's daughter not as lucky as her own daughter, is the reason why I think BRCA tests are distraction to the search for cure.    Angelina's daughter would KNOW that she has certain susceptibility and MAY take preventive measures.    The poster who tested negative to BRCA mutations like most people would, took the wrong lesson and thought her daughter does not have cancer risk, when she may still have.    

BRCA test is the tip of iceberg of vast information cheap whole genome sequencing would open up.    when you test positive for BRCA, your risk of getting cancer per year is still not 100%.   When you test negative, your risk of getting cancer is not much modified from general population 10%.      Same as mammograms and MRIs and what not.

The ultimate goal is that all MBC has cures, which would render tests unnecessary except for reducing cost.   If there's no cure, then it's good to at least have a test that could predict 100% cancer in the near term.   BRCA tests or mammograms and MRIs are all very very short.   

SpecialK

megadotz - yes Tricare does have coverage for children up to age 26 - I have a 23 year-old that just graduated from college, and a 25 year-old who is a senior in college, both have Tricare Young Adult coverage.  It is a separate policy from ours and I do pay a monthly premium for that coverage that is more expensive than what my DH and I pay, but their coverage is extended until their 26th birthday as part of the Affordable Care Act, by way of their father's military service.  There was a delay in instituting this coverage after the legislation by about 6 months, but they have it now.  Below is a link:

http://www.tricare.mil/TYA

casaredonda

The fact the Angelina Jolie has an enormous amount of wealth, getting tested, having surgery, perfect reconstruction is no big deal  Stating that the loss of breasts is an enormous sacrifice diminishes the courage that the rest of us felt when we made the decision to have bilateral mastectomies due to a cancer diagnosis.  Everyone has to take their journey with their own strengths and convictions.  For the rest of us with little or no health insurance, all the glamour has been taken out of the equation.  Some folks do everything that can be done, and a few chose to take herbs, consult alternative practitioners.  We honor the journey.  I can't even imagine what women in the developing world do when they don't even have access to any health care.  I guess I find all the media attention to a celebrity's decision annoying.  We have the money to send drones to bomb remote places, why do we need to collect the pennies from our neighbors to fund research.  I was at a Relay for Life event yesterday and the whole "fight this" "hate that" is no longer congruent with my life.  Everyone keep on keeping on.

DX 12/06, surgery, chemo and radiation 2007, 2 and a half years of Arimidex (chose to end that).  Feeling well, consider myself cured.

Megadotz

SpecialK, Glad to hear that  Tricare  has the benefit, even if a bit late.  Let's hope they change on the genetic screening as well.

jenrio

Illumina, the gorilla in gene sequencing is teaming up with UK cancer research institute to offer patients more comprehensive testing for 100s of BC susciptabilities, not just BRCA.   If this is Angelina Jolie effect, I'm happy about it!

 http://community.breastcancer.org/forum/73/topic/804928?page=1#idx_1

SpecialK

megadotz - I doubt they will reverse themselves - they paid for it for me as a standard benefit, I did not need any special documentation it was just available as a benefit if it was justified, but they no longer cover it for anyone.

gpawelski

Dr. Robert A. Nagourney gave a really simplistic explanation of The Angelina Jolie Effect.

http://robertanagourney.wordpress.com/2013/05/24/the-angelina-jolie-effect/

jenrio

http://breastcanceradvocate.wordpress.com/2013/05/28/a-true-advocate/

This post sums up my thoughts very well.  RIP Maria Wetzel