Supreme Court hears arguments today on BRCA gene patents

Today is a big day for the HBOC community. It would be impossible to miss the news that the Supreme Court is hearing arguments today in the case known as The Association for Molecular Pathology v. Myriad Genetics, a case that has been winding its way through the court system for more than two years.

I awoke this morning to an excellent story by Nina Totenberg of NPR wherein she states that "There is no way to overstate the importance of this case." I agree. This case is not only of the utmost importance to those of us who have BRCA mutations but also to all aspects of the upcoming personalized medicine revolution, which Ms. Totenberg elucidated well in her piece in which she described the financial incentives and impacts of the decision for the biotech industry. I am troubled though that one very important aspect was not covered in this story, especially as today is Tax Day. Specifically, no mention was made about the fact that the government is a big sponsor of biomedical research and in fact spent millions on the hunt for the BRCA genes through the NIH and then the genes were patented by a private company and none of that public investment in discovery was repaid. The story focused on the dollars spent by Myriad on the search for the BRCA genes and why it deserves to protect this investment through the patent process. But what about the public dollars, my tax dollars and your tax dollars? Has everyone forgotten that Myriad was far from the only team of scientists racing to find these genes? Many of those teams of scientists in this country and other countries were financed at least in part with public money. Myriad just happened to be the first over the finish line. Had it been Dr. Mary Claire King, whose research sparked the all out race to find the specific genetic code for the Breast Cancer Genes then I have no doubt that we would not be paying $3,400 per test for a test that is less than comprehensive. For more information about this race to find the breast cancer gene please read Breakthrough: The Race to Find the Breast Cancer Gene by Kevin Davies and Michael White.  It is an excellent read and an exciting story but it makes very clear the amount of effort that went into this discovery by people other than those scientists at Myriad.

My friend Joanna Rudnick, the amazing BRCA-positive filmmaker who made "In the Family" about living with a BRCA mutation wrote an amazing Blog about her journey about about her thoughts on today's Supreme Court arguments.  Please read her blog and share it with your friends.  Also, in honor of the Supreme Court arguments, POV is making In the Family available for free streaming for a limited time.  If you have not yet seen it, now is the perfect opportunity.  And please share your thoughts.

As Nina Totenberg said, the implications of this case reach far beyond the breast cancer genes, yet those of us with mutations on those genes are possibly the ones watching this case most closely. The NPR story can be found here.

Joi


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National HBOC Week

National HBOC week starts today.  As I mentioned in my Ms. Magazine blog post about HBOC week,  most people don't yet know about Hereditary Breast and Ovarian Cancer week even though Congress created this recognition more than two years ago.

Friends, please read and share this blog post by FORCE founder Sue Friedman and help us get the word out about Hereditary Breast and Ovarian Cancer.  The shame is not that people do not know about HBOC week, the real shame is when women are diagnosed with hereditary breast or ovarian cancer without ever knowing they were at risk for these diseases in the first place.  17 years of science has proven these diseases are preventable but that knowledge is the key to being able to take action.  Personally, I am grateful for the knowledge of my BRCA mutation that allowed me to pursue preventive surgery at the right time of my life to be able to prevent the breast cancer that attacked my mother when she was far younger than I am now.  What a blessing to be healthy and focused on my children rather than fighting for my life.

As Sue Friedman so eloquently says:

As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.

To celebrate National HBOC week this year I will be running in the Kickin' Cancer 5K to raise money for Hereditary Breast and Ovarian Cancer research.  Please support research to help find better ovarian cancer early detection and better prevention options for women at risk of hereditary breast and ovarian cancer.  

Please support my run or join my team!

Be well and be well informed!

Happy HBOC Week!

Joi

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A husband's BRCA birthday wish:

Friends, check out this heartfelt birthday video by Steve Hofstetter in tribute to his wife and FORCE:




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Ovarian Cancer Screening Ineffective

Yesterday the New York Times reported on the utter futility of screening for ovarian cancer.  The United States Preventive Services Task Force this week again confirmed that ovarian cancer screening, such as it is, fails to save lives.  Moreover, the USPSTF determined that screening may cause more harm than good in healthy average risk women because of false positives that lead to unnecessary surgery, which can have serious complications.  Accordingly, the USPSTF recommends against routine ovarian cancer screening for most women.  But the USPSTF was careful to say that its recommendation does not apply to women who are at high risk for ovarian cancer due to BRCA mutations or family history.  Unfortunately even for these women the sad truth remains, our current screening options are sadly and wholly inadequate.

As I have blogged before, September is Ovarian Cancer Awareness Month and women desperately need better options.  In fact my very first post pondered a world where men were as regularly recommended to remove their sexual organs for cancer prevention as are women at risk for breast and ovarian cancer.  No doubt the world would be a different place and the clamor for more research funding would be loud. Ovarian cancer prevention needs the same type of research funding as breast cancer. September is ovarian cancer awareness month and is represented by a teal ribbon. Yet our world is not bathed in teal in September the way it is bathed in pink each October even though ovarian cancer is one of the most deadly women’s cancers and effective early detection methods do not exist. Research money only comes to those who are loud and create a public dialogue. September needs to be bathed in teal.

Two years ago I had surgery to remove my ovaries to reduce my inherited risk of ovarian cancer. Six weeks later I celebrated my recovery from preventive surgery to remove my ovaries with a 5K run in the 9th Annual KICKIN’ CANCER! 5K Walk/Run and Women's Healthcare Expo to raise funds and awareness for the early detection and prevention of both ovarian and breast cancer. This year will be my third year as captain of Team FORCE and I am once again running to raise money for ovarian cancer research.

This year’s run is for me even more personal. A friend who this time last year was battling ovarian cancer will be walking with my team this year. I celebrate her recovery but that celebration is tempered with the reality that advanced ovarian cancer is rarely ever over. This truth was brought home to me at the beginning of the summer when another woman in our FORCE family lost her battle to ovarian cancer. Our team is dedicating our walk/run this year to Gloria Glaser and we will be joined by members of her family. I saw Gloria in March, at which time her ovarian cancer was thought to be in remission. She looked fabulous and was bubbly and full of life. Her recurrence was diagnosed two weeks after I last saw her and she was gone less than six weeks later.

I have been involved with FORCE, Facing Our Risk of Cancer Empowered, since 2006. FORCE is a national nonprofit dedicated to fighting hereditary breast and ovarian cancer. FORCE is a truly wonderful organization that is making a difference in the lives of high-risk women and men (yes, men do get breast cancer too and do carry mutations on BRCA genes). FORCE is partnering with the sponsor of KICKIN’ CANCER, the Lynne Cohen Foundation for Ovarian Cancer Research, to raise money for this important cause.

Team FORCE is raising money to fund research find cures and early detection options for ovarian cancer and breast cancer. Half of the funds raised by Team FORCE will go to the Lynne Cohen Foundation's research and preventive care clinics and the other half of the money raised by Team FORCE will go to the FORCE Hereditary Cancer Research Fund.

I believe that this collaboration between FORCE and the Lynne Cohen Foundation is important and well worth the effort. I am particularly proud of the fact that the Team FORCE has raised more than $45,000 for ovarian cancer research in the past 3 years.  This is just a drop in the bucket of what is needed but it is nonetheless an important part.  I sincerely hope that future generations will not have to face surgical menopause as I did in order to manage ovarian cancer risk.

Here is how you can help:

1. Join Team FORCE and come out on September 30th and walk (or run) with me! To join visit www.kickincancer.com, select “Register Here,” select “Join a Team” then from the drop down menu at the bottom of the box select “Team FORCE.” OR click on "Join Our Team" from the Team FORCE page. Be sure to enter the discount code “force” on the individual registration page and you will receive a $5 discount on registration for the event.

OR

2. Sponsor me! To donate online, visit my webpage. Checks made payable to KICKIN’ CANCER! can be mailed to The Lynne Cohen Foundation for Ovarian Cancer Research, P.O. Box 7128, Santa Monica, CA 90406-7128. Please include my name in the memo line of your check. Donations are tax deductible as provided by law.

OR

3. Become a virtual runner. You can join our team as a virtual runner, raise money for our team, and show your support for the cause no matter where you are in the country. You can run a 5K with your friends wherever you are and send us the photos to post on our LA FORCE page!

Thank you for considering this request for support. If you have any questions about the Lynne Cohen Foundation, please visit www.lynnecohenfoundation.org, call 877.OVARY.11, or email info@lcfocr.org. For information about FORCE please visit www.facingourrisk.org.

Sincerely,
Joi




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My most recent response to Dr. Oransky

Dear readers,

There is a rather heated discussion going on with Dr. Oransky on his blog about how to define the term "previvor" and whether Dr. Oransky appropriately used the term in his TedMed talk in recent weeks.  Check out Tuesday's blog below for the full history of this issue.

In the meantime, I thought you might like to see my most recent response to Dr. Oransky.  Dr. Oransky's response to me was:

If your reference to the lifetime risk of breast cancer is to demonstrate that all women are at some risk that makes them into a previvor, I must respectfully note that is the kind of lack of clarity in labeling that I was concerned enough about to label “pre-death” in my talk. Similarly, using a term like “previvor” suggests cancer is inevitable, and while it is in fact quite likely for some people, as many have correctly noted on this thread, it varies widely and is quite low for many people. I think it would be much better to determine risk and therefore be able to judge the relationship of risk and benefit for individual people, rather than suggest that cancer is inevitable for all women.

And I posted the following response on his blog:

I am afraid you misconstrued my words. I also suspect you did not fully read my blog as I noted that even having a BRCA mutation does not mean that cancer is inevitable, although for many BRCA families it may seem so as generation after generation of women are mowed down by this disease at ever younger ages. I also did not mean that every woman is by definition a previvor, just that being a woman is, in and of itself a risk factor. To assert otherwise is to defy reality. Rather, what I meant is that there are a variety of things that can significantly raise risk, such as treatment for other cancers with radiation, and that those women should not be excluded from the high-risk community by a tightly parsed definition as you suggest. You, by virtue of your hypertension are at increased risk of certain medical complications, including stroke. I suspect that you do what is necessary to reduce that risk by controlling your condition. Women at high risk for breast cancer must, as you do, do a variety of things to reduce their risk and/or to find a cancer at a sufficiently early stage to be curable. Once you begin to look closely at the research, you will discover that there are clinical differences in these cancers that mean a greater percentage of early diagnosed cancers in these women will go on to be fatal, regardless of the treatments current medical technology can offer. Women staring down the barrel of this gun have every right to call themselves whatever they want, including previvor, and it is disrespectful of the women facing these very real risks who must make life altering decisions that are considered "extreme" to many to poke fun at the term previvior and to equate it with your clearly designed to be amusing label of "pre-death." I believe that the point of your talk was to point out where the medical community goes overboard in the treatment of conditions or non-conditions that are unlikely to come to fruition. I continue to believe that your inclusion of the term previvor in your talk and your continued defense of the use of the term in this context is disrespectful of the high-risk breast and ovarian cancer community. One of the biggest challenges faced by FORCE and by our community is that there are still many, many doctors who do not believe in genetic testing and women's lives are lost because the medical establishment fails them on this front. The world for which you advocated in your talk would be one where even fewer doctors looked closely at their patient's medical history because to do so is a waste of time and medical resources. That is a vision of the future of our health care system that is totally at odds with my beliefs and with the mission of FORCE. If you wish to truly focus the discussion of excessive health care spending on matt ers that are indeed excessive, then your continued attack on the the high-risk community really weakens your argument. Respectfully, Joi

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