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Supreme Court rules against Myriad

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Topic: Supreme Court rules against Myriad

Posted By: mainsailset
Subject: Supreme Court rules against Myriad
Date Posted: Jun 13 2013 at 11:54am

This is the best news possible! It is a fascinating ruling and surely will have broad implications for many medical outcomes http://www.bloomberg.com/news/2013-06-13/gene-patents-limited-by-high-court-in-mixed-ruling-for-myriad.html" rel="nofollow - http://www.bloomberg.com/news/2013-06-13/gene-patents-limited-by-high-court-in-mixed-ruling-for-myriad.html

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear

Replies:

Posted By: majjers
Date Posted: Jun 13 2013 at 12:26pm

Thanks for posting! Could this be a win-win for big Corporate researchers AND patients?! I sure hope so.

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dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!

Posted By: SagePatientAdvocates
Date Posted: Jun 13 2013 at 12:38pm

Dear all,

I just wrote to a friend, Lisa Madlensky who is a marvelous, very knowledgeable, Certified Genetic Counselor at UCSD and asked her if companies will now be able to compete directly with Myriad. Her response-

"We have already learned that at least 4 companies are now offering BRCA testing ( http://ambrygen.com/" rel="nofollow - Ambry is offering it immediately , and others are "setting up" the test.
The Ambry base price is $2200, so for those patients with higher copays, this will save them some money.

I'm a fan of Ambry because they have historically worked with CGCs, rather than trying to undermine what we do (e.g. tell physicians that there is no need to recommend genetic counseling prior to testing).

It will be a confusing couple of weeks while we all get oriented to the new test offerings; of course there will likely be a few new "less reputable" labs popping up offering extremely low-cost testing, but we'll see...

Overall, I'm very happy with the decision!"
Warm regards,
Lisa

Lisa Madlensky, PhD, CGC
Associate Professor & Genetic Counselor
University of California, San Diego
Director, http://cancer.ucsd.edu/care-centers/genetics/Pages/default.aspx" rel="nofollow - Family Cancer Genetics Program
Moores UCSD Cancer Center

Lisa further encouraged me to suggest to anyone that has not met with a Certified Genetic Counselor (CGC) to go to the following links to find one in your area.

http://nsgc.org/" rel="nofollow - nsgc.org

you can click on find a genetic counselor near you

or

http://www.abgc.net/ABGC/AmericanBoardofGeneticCounselors.asp" rel="nofollow - http://www.abgc.net/ABGC/AmericanBoardofGeneticCounselors.asp

and click of Find a Certified Genetic Counselor

If you have a choice I would always suggest a CGC.

A CGC can help guide your through the process. I would imagine that Myriad's testing price will come down substantially. If it does it may make sense to continue to use them as they do excellent work. Again, a good CGC can advise you on what tests to get and what CLIA lab to use.

warmly,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: 123Donna
Date Posted: Jun 13 2013 at 1:58pm

I believe this is great news for patients, doctors and researchers. I'm still scratching my head how both sides can claim victory? I guess we'll have to see how this plays out and if further litigation occurs.

Donna

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: mainsailset
Date Posted: Jun 13 2013 at 5:59pm

Here's a more in depth analysis with lots of links to go into the weeds if you've a mind to. http://www.scotusblog.com/2013/06/evening-round-up-myriad-genetics/#more-165016" rel="nofollow - http://www.scotusblog.com/2013/06/evening-round-up-myriad-genetics/#more-165016 Specifically, I glean that while the Court did not uphold the right of Myriad to patent genes that were created by nature, it does uphold those referred to as Egenes or man made genes. In other words they're saying if you didn't design them or build them you can't patent them, and your discovery is applaudable but not patentable. Thus, Myriad lost some but held onto some...as the article points out there's an argument to be made that the Court's decision is a reflection of expediency rather than an understading of science.

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear

Posted By: arabella
Date Posted: Jun 14 2013 at 9:55am

I just had my blood drawn yesterday (day of ruling) for BRCA testing....

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Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy

Posted By: SagePatientAdvocates
Date Posted: Jun 14 2013 at 9:59am

Good luck to you Arabella..

warmly,

Steve

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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: 123Donna
Date Posted: Jun 14 2013 at 6:33pm

“Many academic labs, including our own, will soon be offering panel tests for dozens, or even hundreds of genes, for the same price Myriad historically charged for just two genes,” said Dr. Kenneth Offit, chief of the clinical genetics service at Memorial Sloan-Kettering Cancer Center.

Myriad itself has announced plans to phase out its BRCA gene tests by the middle of 2015 and replace them with a test that will analyze 25 genes that contribute to the risk of breast cancer and several other types of cancer. The price is expected to be similar to what the BRCA analysis costs now.

Also becoming more practical is whole genome sequencing. Some experts had feared that having numerous patents on individual genes would impede the ability to sequence and analyze a person’s entire genome, though others doubted that. In any case, that threat is now removed.

http://www.nytimes.com/2013/06/14/business/after-dna-patent-ruling-availability-of-genetic-tests-could-broaden.html?smid=tw-share&_r=2&" rel="nofollow - http://www.nytimes.com/2013/06/14/business/after-dna-patent-ruling-availability-of-genetic-tests-could-broaden.html?smid=tw-share&_r=2&

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Nana Mimi
Date Posted: Jun 16 2013 at 9:29am

Hello, I'm an adoptee and over 60 yrs old and therefore don't meet the criteria for insurance to cover the testing. I did submit a saliva sample to Myriad but haven't told them to go ahead with the testing yet. I have gotten no where with Medicare or my secondary insurance regarding making an exception due to lack of family history. I even offered to split it 3 ways! I have 3 children and 5 grand kids and this is a piece of info I think is important to have. So I am hoping this new SC ruling will lower the cost ($3000).

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65 yrs old. Dx 5/13. IDCIS. TNBC. Lumpectomy 1.1cm clean margins. SNB 0/3. Stage 1. Grade 2. 4/4 rnds TC. Rad X 33. Done!

Posted By: 123Donna
Date Posted: Jun 17 2013 at 7:11pm

I Discovered the BRCA1 Gene

And I am delighted the Supreme Court ruled that it cannot be patented.

By http://www.slate.com/authors.sara_reardon.html" rel="nofollow - Sara Reardon |Posted Saturday, June 15, 2013, at 7:22 AM

Dr. Mary-Claire King arrives at the Seattle International Film Festival Premiere of "Decoding Annie Parker".

Mary-Claire King at the Seattle International Film Festival premiere of Decoding Annie Parker on June 6, 2013 in Seattle.

Photo by Mat Hayward/Getty Images

Mary-Claire King, the geneticist who discovered the BRCA1 gene, says she is delighted by the U.S. Supreme Court ruling that makes it illegal to patent it. Her work inspired the forthcoming film Decoding Annie Parker, in which she is portrayed by Helen Hunt. http://www.slate.com/articles/health_and_science/new_scientist/2013/06/brca_gene_discovery_mary_claire_king_says_the_supreme_court_is_right_not.html#correction" rel="nofollow - *

Sara Reardon: You discovered the BRCA1 gene in the early 1990s. Soon afterward, Myriad Genetics determined and patented the sequences of the genes. At the time, were you surprised by that?
Mary-Claire King: Genes had been patented before; the cystic fibrosis gene was patented. But I don't think anyone—from the U.S. National Institutes of Health or anywhere else—anticipated the level of patent protection Myriad has engaged in.

What was different about Myriad was its insistence that it was the only entity that could do the test and its aggressive efforts to shut down anyone else. That's why http://www.aclu.org/free-speech-technology-and-liberty-womens-rights/association-molecular-pathology-v-myriad-genetics" rel="nofollow - in 2009 the American Civil Liberties Union filed the suit that has gone all the way to the U.S. Supreme Court. They brought the case on behalf of people who needed tests and were not able to get a second opinion.

< id="google_ads__997619" name="google_ads__997619" ="about:blank" width="300" height="250" scrolling="no" marginwidth="0" marginheight="0" border="0" style="margin: 0px; padding: 0px; border-width: 0px; font-family: inherit; font-size: inherit; font-style: inherit; font-variant: inherit; line-height: inherit; vertical-align: line;">

SR: On Thursday, the Supreme Court ruled that http://www.newscientist.com/article/dn23700-us-court-ruling-on-breast-cancer-genes-a-mixed-blessing.html" rel="nofollow - . What is your reaction to the ruling?
MK: I am delighted. This is a fabulous result for patients, physicians, scientists, and common sense. When I was working on it from 1974 to 1994, it did not cross my mind that a legal case that would end up in the Supreme Court would be the consequence of my work. But it did, and sometimes that's what happens when you start in a new area of science. It is a relief to have a decision after so many years, and I'm so gratified that it was a unanimous decision.

SR: What's next for genetic testing, now that we have this ruling?
MK: Developing multigene panels—one-stop shops for testing for susceptibility to breast and ovarian cancers on many genes—has been a very high priority. The multigene test we developed, called http://web.labmed.washington.edu/tests/genetics/BROCA" rel="nofollow - BROCA , has been used for months, but until today we had to maskBRCA1 and BRCA2. The Supreme Court ruling removes the illogical situation of being able to test all genes but having to mask some. Multigene tests can now be made available to people by many firms. In fact, I think they were on the market straight after the ruling.

SR: BRCA genes were also in the news recently when http://www.newscientist.com/article/dn23545-how-was-angelina-jolies-breast-cancer-risk-calculated.html" rel="nofollow - after learning she was a carrier of a harmful BRCA1 mutation. Was that welcome publicity?
MK: It was a wonderful piece she wrote for the New York Times; she's come to understand it very well. I hope Angelina Jolie being so clear about what this involves and the development of next-generation sequencing lead to more women getting sequencing done. Most cancer isn't inherited, but there is a straightforward genetic test; if a woman is concerned, she can find out. I would like to see women in their 30s offered genetic testing more routinely at a time when something can be done about it.

SR: Your discovery is the subject of the new film, http://www.decodingannieparkerfilm.com/" rel="nofollow - - Decoding Annie Parker . What is it like to have a movie made about your work?
MK: I had nothing to do with it at all and did not know about it until after it was complete. I found out by accident. One of my grad students came in and said: "You never told me there's a movie about you."

"There is not a movie about me," I replied and didn't even stop what I was doing. She showed me on her laptop, and I thought, "Yeah, sure." But then I checked for myself, and sure enough, there it was.

SR: The film suggests you really struggled in the 1980s to convince people that some cancers have a genetic component. Was that the case?
MK: The main experience of the period was that people completely ignored me. I was a young woman, not a physician, working on my own with modest support from the National Institutes of Health.

There was active opposition from some groups. But there was also terrific support from clinicians who had patients from families with large numbers of women who'd had breast and ovarian cancer. They wanted to know what to do about it. They knew it wasn't because of something the women had done wrong. I had a great deal of support from oncologists and couldn't have done the project without it.

SR: Today, of course, cancer genetics is a booming field. Is that thanks to the BRCA genes?
MK: I think it increased interest enormously. It confirmed the idea of inherited predisposition to cancer. My work showed that one could use the tools of genetic analysis to prove the existence of genes responsible for an inherited form of a major common disease and that you can parse out the inherited portion.

Most breast cancer isn't inherited, but when it is, it's devastating. Today there is the recognition that even if a disease is genetic in most people, the particular mutation that any one affected person carries is likely to be rare.

SR: So each patient may carry a different mutation in a different cancer gene—and we now know of dozens of such genes. How can you look at all of these in detail? It seems a tall order.
MK: The BROCA test uses technology we have developed with next-generation sequencing that identifies all classes of mutations in all known breast and ovarian cancer genes in one tube. It's a single test that's much cheaper to run than commercial testing. And we want to make it available as widely as possible.

SR: What does the test name BROCA stand for?
MK: It is named for the 19th-century French surgeon and pathologist Pierre Paul Broca, who was the first to describe inherited breast cancer in families in a systematic way. Based on his work, we are currently trying to trace the relatives of these families from the 1860s to see if they have BRCA1 or BRCA2.

SR: How has medicine changed since you started working in cancer genetics decades ago?
MK: I think we are now in an entirely different landscape. What has changed the most in the past 35 years is the technology. The questions people have been asking about genetics and ancestry and the relationship of genes to disease have been the same for hundreds of years. What has changed is our capacity to answer them. What we have been doing in the research laboratory all along, we can now move into patient care.

This article originally appeared in http://www.newscientist.com/" rel="nofollow - - New Scientist .

Correction, June 17, 2013: This article originally stated that Mary-Claire King discovered both the BRCA1 and BRCA2 genes. She discovered BRCA1. ( http://www.slate.com/articles/health_and_science/new_scientist/2013/06/brca_gene_discovery_mary_claire_king_says_the_supreme_court_is_right_not.html#return" rel="nofollow - Return to the corrected sentence

http://www.slate.com/articles/health_and_science/new_scientist/2013/06/brca_gene_discovery_mary_claire_king_says_the_supreme_court_is_right_not.html" rel="nofollow - http://www.slate.com/articles/health_and_science/new_scientist/2013/06/brca_gene_discovery_mary_claire_king_says_the_supreme_court_is_right_not.html

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Grateful for today
Date Posted: Jun 18 2013 at 1:11am

INFORMATIONAL

Some information especially for those whose insurance does not cover BRCA 1 and BRCA 2 testing:
      Discuss with your physician, if appropriate.
      Other members may have more information to add.

Per link:    http://web.labmed.washington.edu/tests/genetics/BROCA" rel="nofollow - http://web.labmed.washington.edu/tests/genetics/BROCA
University of Washington Laboratory Medicine Clinical Information
BROCA - Cancer Risk Panel
Questions: 1-800-256-0893
BRCA1 and BRCA2 added June 14, 2013

Grateful for today...............Judy

Addendum:
If one's insurance covers BRCA testing, then follow your MD's/Cancer Center's usual workflow.
If one's insurance does not cover BRCA testing, one might want to explore any new options
    after the Supreme Court ruling about BRCA testing.
    One MAY/COULD end up paying the same amount of money for just the BRCA
          or about the same amount for BRCA PLUS a more complete gene panel.
    Work with one's certified genetics counselor for the most current info and best plan for you.

Other members please post any correction to the above if needed.....or additional info.
Thanks.

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