Tuesday, June 12, 2012

Is your doctor or genetic counselor a disease monger?

Diseasemongering. Wow, what an ugly term. And one I had never thought would be associated with a doctor's counseling of patients with BRCA mutations that cause significantly increased risk for breast and ovarian cancer. Yet this is precisely what one speaker did in a recent TedMed presentation.

For those unfamiliar with TedMed this is what it is:
TEDMED is a community of people who are passionate about imagining the future of health and medicine.

Once a year, TEDMED holds a "grand gathering" where leaders from all sectors of society come together for three and a half days. They explore the promise of technology and the potential of human achievement. This unique event combines dazzling celebration, high-powered learning and unforgettable theater.

TEDMED is the only place where a Nobel Prize winning neurobiologist has a conversation with a four-star general… where an opera singer (with a double lung transplant) chats with a NASA space physician… and where a ballet dancer talks to an exoskeleton designer.

Together, they weave a tapestry that combines the best thinking from every field and creates infinite new possibilities.

TEDMED has no agenda and no policy prescriptions. Instead, we seek to serve the nation -- and the world -- by creating a safe place where people with very different ideas can come together to talk, to learn and to celebrate the amazing world we live in.
The 2012 TedMed included Dr. Ivan Oransky, whose clever and memorable 10-minute talk used the example of MoneyBall to make the point that the health care industry wastes billions of dollars treating not diseases but the preconditions for such diseases.   He starts with the point that the healthcare system is incapable of predicting what will happen to people who have a "pre" condition and he uses humor to make his point by saying we all have the condition "predeath."  His talk used a variety of examples, including "subclinical acne," "prehypertension," "prediabetes," and "preanxiety,"  among others.   He jokingly says that if the audience survives to the end of his talk they will be "previvors."

Up to this point in the talk I had agreed with many if not most of Dr. Oransky's points. But starting at the 5 minute 30 second mark, Dr. Oransky begins an attack on women like me who have BRCA mutations, on the medical community that treats us, and upon FORCE -- the only advocacy organization that provides education, support, advocacy and research for this community -- that is both shocking and disturbing.
"I made up "predeath" .... I didn't make up previvor. Previvor is what a particular cancer advocacy group would like everyone who just has a risk factor but hasn't actually had that cancer to call themselves."
He goes on to poke further fun at the term previvor by suggesting that there could be a new reality TV show for previvors where if a participant develops the disease they are off the island, which got a good laugh from the audience.  Then he took another hard hit at FORCE:
“We have advocacy groups like the one that’s come up with previvor who want to make more and more people feel they are at risk or might have a condition so that they can raise more funds and raise visibility.”
Now those are harsh words and an accusation against FORCE that really cannot go without response.

Point 1: Use of the term Previvor

Dr. Oransky says that all of the "preconditions" about which he talks are "preposterous."  This and the other direct criticisms of "previvors" are in my opinion a direct belittling of the hereditary cancer community.  I can only hope that it is because Dr. Oransky, although medically trained, somehow missed the training on cancer genetics and is speaking out of lack of knowledge.  He advocates that the medical community should not seek to identify people with "pre" conditions, including women who carry BRCA mutations, because this is "overmedicalization" and people with preconditions might not go on to develop the disease.   OK, he is right.  Having a BRCA mutation is not a 100 percent guarantee that breast or ovarian cancer will develop.  But the odds are overwhelmingly stacked against such a woman.  Dr. Oransky need not go back to medical school to gain a better understanding of the odds, he need only consult the excellent web-based decision tool developed by Stanford Medical School to learn that if he were to have a 25-year-old BRCA1-positive daughter, her odds of being alive at age 70 without having developed breast or ovarian cancer are only 15 out of 100 if she does nothing. (For comparison purposes, women in the general population have a 79 percent chance of living to age 70 without developing these cancers)  If she were to not know about her genetic risk and were to follow the USPSTF recommendations to begin mammography screening at age 50 her odds would not change at all, she would only have a 15 percent chance of living to 70 without developing breast or ovarian cancer.  BUT if the medical community can find and counsel her about her risk then her odds of being alive and cancer free at age 70 begin to rise.  Being armed with knowledge is where lives can be saved.

I would urge Dr. Oransky to contact some of the many women who have responded to his blog and talk with them about their family cancer history.  I have a friend with a BRCA1 mutation who celebrated her 47th birthday in recent months.  It was an emotional birthday for her as she is the first female member of her family reach age 47 in at least 3 generations.  All of the other women in her family died of breast cancer before this this age.  Does she consider herself a previvor?  To be honest I haven't asked.  But what most of us living with BRCA mutations but without a cancer diagnosis consider ourselves is lucky.

Sue Friedman, the founder and executive director of FORCE, wrote a letter to Mr. Oransky as well as a blog post taking exception to his TedMed presentation and attack on the hereditary cancer community.  Mr. Oransky has now issued a response which continues to criticize FORCE for its definition of the term "previvor," which he believes is excessively broad.  Mr. Oransky says he would like to engage in a dialogue about the definition of the term "previvor" but at no point does he apologize for his attack on FORCE and on the hereditary cancer community.  Rather than spreading life saving information about hereditary cancer risk, Dr. Oransky has sidetracked the discussion by belittling the term previvor.

Point 2: FORCE does not want to make more people feel they are at risk so they can raise funds

I find Mr. Oransky's point that
“We have advocacy groups like the one that’s come up with previvor who want to make more and more people feel they are at risk or might have a condition so that they can raise more funds and raise visibility.”
also troubling.  Part of FORCE's mission is to raise awareness so from that perspective, yes, FORCE does seek to raise visibility.  And yes, FORCE does seek to raise needed funds for its mission.  But Mr. Oransky implies that these goals are self serving and do not provide any public benefit.  This is where he is wrong.  A quick look at FORCE's publicly available financial data reveals an organization that is unlike most other breast cancer charities because it does not spend a dime on professional fundraisers and very little on paid staff.  In 2010 FORCE spent only $121,000 on salaries for 6 employees and performed the vast majority of its mission with the use of volunteers.  Other breast cancer charities spend hundreds of thousands of dollars on fundraising expenses and millions on salaries.  FORCE does not and is not seeking to raise money to make itself or its employees rich.

As for his point about making more people feel they are at risk, again this implies that there is no real risk, which is not the case.  Rather, with respect to HBOC, the risk is real regardless of a person's knowledge of that risk.  We do not know how many people have BRCA mutations or other mutations that put them at high risk for breast or ovarian cancer, but what we do know is that every week women find out about their BRCA mutation after a breast or ovarian cancer diagnosis.  Many of these women are my friends and, unfortunately, I have been to the funerals of women diagnosed with hereditary breast cancer whose lives very well might have been saved had they known about their BRCA mutation before their cancer diagnosis rather than after.  This is why FORCE seeks to raise money and raise awareness:  to save lives.  And research shows that it does work.  Check out this archived blog post about the positive benefits of risk-reducing strategies for BRCA-positive women.

Mr. Oransky owes the hereditary breast and ovarian cancer community and FORCE an apology for poking fun at women have paid for lack of knowledge with their very lives.  Being a previvor means making some difficult and painful choices.  Choices that most of us would very much rather not have had to face.  No woman removes her breasts lightly.  Mr. Oransky's current offer to quibble over the semantics of the definition of previvor is disrespectful of the women who face these decisions, as was his misuse of the term in his talk.

Mr. Oransky, your next story should be about a high-risk family with a BRCA mutation.  I suspect you will find that the odyssey through the medical care system is not what you might expect.  And I know where you can find some names: through FORCE.

Do I think the doctor who initially recommended genetic testing to me was disease mongering?  No, I don't.  I believe he saved me from the cancer diagnosis that my mother received when she was far younger than I am now.  And he may very well have saved my life.  Has my genetic predisposition to cancer been overmedicalized?  I don't think so.  Do I consider myself a previvor?  Perhaps, although I don't think about the term much.  I just consider myself lucky.


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7 comments:

  1. Joi, I am so happy that you have posted a response to shed light on the reality of high-risk families. I, too, feel lucky for the power of knowledge and absolutely consider myself a previvor. I took steps to reduce my risk of ovarian and fallopian tube cancers -- diseases that took my sisters lives at only 38 and 50 years old. My doctors who have treated BRCA carriers have seen one too many times the cancer showing up when only monitoring is done. We need research to find other ways to help prevent the cancers rather than radical surgeries. I thank GOD for FORCE and all they do for the BRCA community. BR

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  2. BR,

    Thanks for your comment and yes, we DO need better options for prevention, which is the biggest reason why FORCE started the Hereditary Cancer Research Fund. Prevention research is often not sexy nor necessarily likely to lead to a blockbuster drug (which is the kind of research the pharma industry wants to sponsor), which means to find better options for our daughters and granddaughters we need to fund this research ourselves.

    So sorry to hear about your sisters.

    Joi

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  3. Joi -- this is amazing. Everything I want to say but so much more eloquently. Thank you for being an incredible voice for this community.

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  4. thanks for sharing.

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  5. Great read, this makes me more aware with regards to genetic counselor.



    I'm Kim. I work in family counseling in Denver

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  6. So if a doctor has had the experience of taking genetics graduate programs then he is said to be a step ahead.

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