#SCORCHY #BCSM #SCOTUS #ASCO13 #BCANS

Social Media SignThis was an incredible week for breast cancer patients, advocates, doctors, bloggers, and what has happened in breast cancer news and social media. I started on Twitter a year ago and for those of you who don’t know about the format, Twitter is a place where you pick a name for yourself (mine is @a4breastcancer-A4BC was taken) and then there are #hashtags which are names of groups or topics.

Because I find and put together breast cancer news articles as part of Advocates for Breast Cancer (A4BC), I created a new hashtag, #BCANS (Breast Cancer News). I am learning a lot about what ends up as news as well as trying to sort through articles that I hope will be of interest to fellow medical professionals, researchers, advocates, patients, and organizations while I try to decide what is newsworthy. This has been an incredible week of news combined with social media.

bcsmcosI am very proud of being part of the #BCSM (Breast Cancer Social Media) community which meets on Monday nights from 9-10 Eastern Standard time. It is an incredible group moderated by Dr. Deanna Attai (breast surgeon), Alicia Stales and Jody Schroeger and this week we had a review of what happened in breast cancer at the annual meeting of #ASCO13 ( American Society of Clinical Oncology Meeting 2013, Chicago May 30-June3).  I was thrilled because I had followed and gathered #BCANS (breast cancer news) everyday at #ASCO13. I also used and followed the #ASCO13 Twitter feed.

BCSM (1)The #BCSM meeting Monday night was so exciting because we had almost as many doctors as patients and patient advocates on the chat including the President of ASCO , Dr. Clifford Hudis (who is also the Chief of Breast Cancer Medicine at MSKCC-(Memorial Sloan Kettering), Dr. Seisenberg (oncologist), Dr. Diane Radford (breast surgeon), Dr. Bob Miller (oncologist), Dr. Matthew Katz, (radiation oncologist),  Dr. Krupali (medical oncologist), Dr. Dana (breast oncologist), Dr.Anas Younes (lymphoma expert), Dr.Damodhar (surgeon), and Dr. Naoto Ueno (medical oncologist). (I hope I didn’t miss anyone and I simplified their specialties as otherwise this would be very long!) It was so exciting with all the Doctors and patients interacting, talking about the breast cancer highlights from #ASCO13.

What we discussed is in trials and things we can be hopeful for in the future as well as certain things that may impact our specific cases that we can talk to our own oncologists about. I have mentioned how impressed I am with ASCO because the organization recognizes the importance of patient advocates as well as social media and it relationship to current oncology practices.

What was so great about the #BCSM chat was that patients and doctors could come together and discuss highlights from the #ASCO13 meeting  and I love that the doctors are willing to listen to patients, our thoughts, stories as well as ideas and we all learned something together. I am honored that theses doctors care about patients and come together for this type of meeting and I am so impressed with the people I am meeting as a result. To see the transcript follow this link: #BCSM Transcript- Highlights from #ASCO13

david-jay-the-scar-project-04I am so excited with what’s happening with social media. I am so proud of my friend and fellow blogger Scorchy Barrington  at: The Sarcastic Boob.  Scorchy started a petition on change.org opposing Facebook for not allowing photographs from famed photographer David Jay, that showed post-mastectomy photos of women known as The Scar Project, because they violated Facebook’s terms of service. Imagine my delight as I am gathering the news on Wednesday and I see on my news feed an article in the Chicago Tribune that talks about Scorchy’s change.org petition, where she got over 21 thousand signatures of people who felt the pictures belonged on Facebook. I rushed to get the message out on Twitter and as I was also getting it on Facebook there were so many news feeds of articles including CBS News, FOXThe Daily News, The Daily Mail, NBC, ABC , (to name a few). coming out at once that I could hardly keep up with them. Then there was a burst of energy on Twitter and Facebook with so many people cheering for Scorchy and another great friend and blogger AnneMarie at: Chemobrain…In the Fog, started a campaign to get #Scorchy trending on Twitter.

FacebookFacebook posted this statement: “We agree that undergoing a mastectomy is a life-changing experience and that sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer. The vast majority of these kinds of photos are compliant with our policies.”

Thanks to brilliant work of Scorchy they will now show these important photos as well as Annmarie Giannino-Otis’s photos at Stupid Dumb Breast Cancer. If you haven’t seen The Scar Project photos, I recommend you look at it here: The Scar Project

Scorchy was quoted saying, “We want the world to know that breast cancer is not a pink ribbon — it is traumatic, it is life-changing, and it urgently needs a cure.”

blog_iconScorchy has breast cancer and is Stage IV. She is an amazing blogger, honest, funny, engaging and what she did with this petition and getting all of this news in mainstream media is so fantastic, because patient advocates have worked so hard to let the public know that breast cancer is so much more than a pink ribbon, while all of this “pinkwashing” about the disease distorts some of the harsh realities about breast cancer. These photographs depict real women who know the truth about mastectomies which make scars and are many times lots of surgeries (my case), with different women making difficult choices about whether to do reconstruction and some women especially who get IBC (Inflammatory Breast Cancer) can’t even try reconstruction because IBC happens on the breast skin. As I have said so many times this disease is killing one woman every 14 minutes in the US alone.

pinkcultureThere’s a lot of “pinkwashing” of the disease and so many woman who have had breast cancer hate the color pink because of what has been done to the color by representing an oversimplification of a pretty pink disease. As a former ballerina I still love the color pink but I detest “pinkwashing.”

Getting back to this exciting week and all the action on social media, I was still so happy when I got up on Thursday after all the excitement that #Scorchy brought and while I was preparing #BCANS articles, #SCOTUS (The Supreme Court of the United States) ruling came down and 9 judges voted against Myriad genetics.

I have written about the Supreme Court Case in which Myriad Genetics was challenged because they had a patent on our human BRCA genes. This patent allowed them to be the only ones to do this gene test which kept other researchers and companies from conducting research for better tests that would help women with treatment decisions by knowing if they are at high risk of developing this genetic form of breast and ovarian cancer. While Myriad held the monopoly on the test, other companies were prevented from developing better and less expensive tests and more research into other genes.

Outlaw human genes_nThe case originally in 2009 brought together many diverse plaintiffs in New York Federal Court that included the ACLU,  the Association for Molecular Pathology, the American College of Medical Genetics, individual researchers; women’s health and breast cancer advocacy groups, including Breast Cancer Action and Our Bodies Ourselves; and women who have breast and ovarian cancer. Originally they ruled against Myriad but the case was overturned a year later in an appellate court. Absent from the list of plaintiffs was the Susan G. Komen Foundation who lists Myriad Genetics as a donor to their organization.

One of the plaintiffs, Breast Cancer Action (which I am so proud to be on the Speakers Bureau) is a national grassroots education and advocacy organization working to end the breast cancer. They do not accept any donations from companies, corporations or anyone who profits from or contributes to the breast cancer epidemic.

blog-brca-decision-500x280-v02The Supreme Court ruled against Myriad Genetics by ruling that companies cannot patent parts of naturally occurring human genes. The ruling was complex and at the heart of it was the patent, but the result will help doctors, pathology labs, research, breast and ovarian cancer patients and those at high risk for the disease and will also help make the test more affordable. The test was very expensive (over $4000.00) and many women were uninsured, and those who carried insurance while doing the test were sometimes denied payment or had very high co-pays for the test. There is already a genetics testing company based in Houston that said it would offer the test for $995.00 called DNATraits. To see the decision go to: The Association for Molecular Pathology et al. vs. Myriad Genetics .

It was so much fun for all of us to get on Social Media cheering this monumental decision of the Supreme Court. I feel so connected to so many others including breast cancer patients, patient advocates, doctors, legislators, organizations, bloggers, and of course #Scorchy, that are working every day to help other patients, make the public aware about the realities of this disease,  get more funding for research especially for patients who are metastatic and doing difficult treatments every day to stay alive, and finally work to develop a vaccine that will prevent this horrible disease in the first place.

blog_iconIt’s been a fantastic week of news and  social media. My favorite end to the week will come out soon from my fellow blogger Marie at: Journeying Beyond Breast Cancer, where she will do the weekly round-up of some of the best blogs that came out this week. It’s really a great time to be connected to so many awesome people.

While Flying – Frustration surrounds Me

For starters I was on a flight for a happy family event. The day started great. I got a lot of work done on our official Advocates for Breast Cancer website. I got to the airport at the right time even though LAX was so crowded because there’s a problem with the TSA and there’s long lines and less TSA agents to help move the lines faster.

airplaneI was a little mad at myself because I was lazy and went through the machine that I have been told by a radiation oncologist (whom I have great respect for) I should probably skip and not expose myself to the radiation. It just seemed faster. I started in an airport lounge with my computer figuring I’d work a little more on my Breast Cancer News at: http://www.scoop.it/t/breast-cancer-news and my Breast Cancer Advocacy stories at: http://www.scoop.it/t/breast-cancer-advocay. Sounds simple enough.

I searched the internet for abstracts and news stories about breast cancer and found what I hoped would make a difference with advocacy for breast cancer (and other cancers). I even discovered I spelled advocacy wrong today. Certainly I’m human and can make a spelling mistake. I sent out all of my good wishes to my fearless friends and organizations on Twitter trying to make pretty graphics while I sent energy to all of these incredible people who I have met either personally or through social media. So it seemed like it was time to get ready to enjoy a special family weekend.

#BCSMmagesI plugged my computer in and I saw a note from AnneMarie to look at Jody’s blog. I already suspected it’s bad news. Jody Schroger is one of our great moderators every Monday night at 6pm PST for #BCSM (breast cancer social media). It’s very bad. After years of NED (no evidence of disease), Jody has joined the 30% of breast cancer thrivers that has metastatic breast cancer (MBC).

And Jody. Why? She is a fantastic person who runs our #bcsm (breast cancer social media community) meetings with Alicia Stales and Dr. Deanna Attai. Why her? Welcome to the world of breast cancer. It’s all bad luck. Whoever gets Stage IV it has nothing to do with them not taking care of themselves or what stage they started with the disease.

I keep thinking everyone knows that I have talked about the statistic that about 30% of early stage breast cancer patients will go on to become metastatic. That’s Stage IV. Early stage breast cancer is what I had when I did chemo, radiation, and had a recurrence a year and half later. Stage IV means that the breast cancer has managed to travel from the breast to other body parts. With breast cancer it’s usually the bones, brains, liver, or lungs. Stage IV is a chronic disease. It is not curable, but can be contained. It depends on many factors how long it can be “contained”. Usually certain pathologies help because there are more targeted therapies that can work on keeping the cancer at bay. For those that don’t understand Stage IV breast cancer is breast cancer that has traveled to another body part. Let’s say it goes to the bones. It’s not bone cancer but still breast cancer that has metastasized to another body part.

MBC_Infographic_01_v14I am angry. This disease is like dominoes. This disease is so cruel. I watch as friends that I care about get the bad news. The reason I did the chemo-hoping no bad cells could hide from all the nasty toxic chemo that I did because my breast cancer made it in to my lymph nodes giving it a chance to enter my blood stream. We never know if some cells hid out and they are just waiting to say- GOT YA.

OK here’s the Stage IV lesson. They have drug regimens that patients go through that can keep the cancer at bay for some time and then the cancer finds a way to outsmart the therapy. So the MBC patient moves on to the next drug. The trick is to try to find regimens with quality of life for as long as you can until the cancer outsmarts the drug. Then it’s time for nerve-racking scans to see if the drug is working. If the medications are working it’s great. The patient stays the course. Eventually though comes the scan that shows the cancer is growing and trying to get to more body parts. Many MBC patients can live a very long time especially with certain pathologies that lend itself to drug therapies that can help contain the disease. Today’s MBC patient can even have a chance of seeing NED (no evidence of disease). But the cancer still comes back and outsmarts the treatment. I respect everyone who has metastatic disease because they have to live knowing they are on a slope that eventually their disease will no longer respond to the drugs we have available today.

At the same time I want to be clear that today’s MBC patient is quite alive and can have a long quality of life.

At the beginning when diagnosed there is so much shock to the body and mind. I have watched my best friend Li Bailey go through the process quicker than others because unfortunately (bad luck) she had a pathology that today we have less medications to fight it with.

This is just not fair.

think-before-you-pink-1024x574So why am I so frustrated? I am running a non-profit that aligns itself with breast cancer organizations that are working to help breast cancer patients. After learning that Komen’s  junk campaigns were based on lies like telling women if they got mammograms they had a 98% chance of beating breast cancer. This is so not true. Komen also raised the most money of any breast cancer organizations. There was a great article in the New York Times, written by journalist Peggey Orestein that I scooped today called “Our Feel-Good War on Breast Cancer,” I published the article in my last blog. Meanwhile Katherine O’Brien of the Secretary of the MBCN (Metastatic Breast Cancer Network) wrote a great summary, overview and response to the article called Our Feel-Good War on Breast Cancer: MBCN Responds. In her response to Komen’s use of funds towards metastatic research, she writes, According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.”

pinkcultureThere has been a a lot of backlash against Komen and as some of you understand the overselling of pink culture I don’t have to explain the issue. I hope that you had time to read these articles. They are so well written.

I think there is another problem with Komen. I think the biggest backlash against them is that they became arrogant. People called them out for having pink parades that did not include the metastatic community because they didn’t want sick people marching in their parades, since it didn’t give you that warm fuzzy feeling of survivors raising their pink pom poms because they survived the disease. Komen thumbed their nose at the metastatic community.

I have to fight for the mets community. I can’t help it. People are dying around me. I don’t like that. People are doing all sorts of difficult medical regimens to stay alive. I have to open my big mouth and do all I can.

I promise you I won’t stop until MBC is a disease that can be reversed or people can live with Quality of life. I will continue to see that we don’t continue having corporations making known toxins that cause breast cancer.

One positive thing that happened is when the #BCSM Community group met we all rallied around Jody. Ironically I was flying back from the weekend on Monday night and joined the meeting on a flight that had wifi. At first I was confused if the timing would work. Then I realized as long as I started the meeting at the right time, the hour would be the same no matter if I flew in to a different time zone. So many of us were frustrated, angry and wanted Jody to know we have her back. This community means so much to me and I am grateful that at least we can come together during the good and bad times.

I have a lot more to say about all of this. For now I am going to publish this first part and continue talking about some other things that have added to my frustration. Stay tuned.

Outlaw Human Gene Patents – Why this Supreme Court Case is so Important to Us

Monday, April 15, while most people are thinking of their deadline to have their taxes in, the Supreme Court will be hearing oral arguments in a landmark case where Myriad Genetics, a corporate diagnostic testing company, is being challenged on their attempt to have a patent on the “breast cancer genes” BRCA1 and BRCA2.

One of the plaintiffs in the case is Breast Cancer Action, an organization that I am proud member of the Speaker’s Bureau. Breast Cancer Action invited people to join them in a rally on the steps of the Supreme Court to outlaw human gene patents.

BCAoutlawgenesoriginalAccording to Breast Cancer Action, myself and so many other people, “Human genes are for human beings, not corporations. Corporate ownership of our genes harms women’s health and blocks progress on breast cancer. This is a historic case that has wound through the legal system for four years.”  I wish I could be on the steps of the Supreme Court with Breast Cancer Action in DC, but I am going to be with them in spirit. Meanwhile I am going to print many stories I  find about this case on my Facebook page, Twitter , and articles I scoop on Breast Cancer News.

The only national breast cancer organization to join the lawsuit against Myriad Genetics’s patents is Breast Cancer Action and I think it is so great that they don’t take money from companies that profit from or contribute to the breast cancer epidemic. This case has united many women’s health organizations, genetic counselors, breast cancer organizations, doctors, research organizations, breast cancer patients, and patient advocates.

The lead plaintiffs in the case are the American Civil Liberties Union and the Public Patent Foundation. The Center for Genetics and Society has also signed several briefs. One of the briefs makes the important point that, “U.S. case law and patent statute plainly say that patents can be awarded only for human inventions.”  I think it’s obvious that genes are not a human invention just like the moon is not a human invention. When we make a space craft to go to the moon that’s a human invention.

These genes are in all of our bodies, but if certain mutations of the BRCA1 and BRCA2 genes are present it will raise the risk of someone getting breast and ovarian cancer. This is important information for people to know if they have these variants. These genetic mutations affect choices if there is an increased need of tests for cancer screenings. It also can contribute to someone’s decision if medical professionals suggest that organs  be removed in their cases.

The test can cost over $3000.00 in some cases, and by Myriad having a monopoly, they are the only ones that can do the test. Many low income people can not afford the test and many of them are at high risk for these dangerous mutations. This prevents someone from getting a second opinion and sometimes people are told they may carry some of these mutations but Myriad is not sure if these are the variants that add to their increased breast cancer risk.genes cartton

Myriad’s patent controls all the versions of the BRCA1 and BRCA2 genes and this also prevents other companies from researching other variants and mutations that are important genomic information for those at risk and actively in treatment for breast cancer. This additional research would contribute important information to help doctors and patients determine more treatment options.

This test is important to metastatic breast cancer patients that are “triple negative” and when they are dying from the disease this test can help give information when deciding if a Parp inhibitor will help them extend their lives for a longer period of time. In the United States, about 108 women die a day from breast cancer. That’s one woman every 14 minutes.

We are hoping that the Supreme Court goes against Myriad and makes the right decision that doesn’t allow Myriad to have this patent. This case will set an important precedent on the future of patents for all the genes that we are trying to uncover in relation to cancer as well as many other diseases.

I am angry because Myriad has plenty of money to hire expensive patent attorneys and it’s obvious they care more about their profits than human lives. I hope the Supreme Court recognizes that this would be a terrible precedent allowing a big diagnostic testing company to have a patent on our human genes.

In a recent related forbes.com article that I scooped called Data War Reaches The Supreme Court, it brings up even more excellent points why there is so much at stake for all of us with the upcoming case in the Supreme Court. The forbes.com article took a quote from a New Yorker article that sums this whole problem up just perfectly. I could not have said it better myself:

 “Just as we enter the era of personalized medicine, we are ironically living in the most restrictive age of genomics. You have to ask, how is it possible that my doctor cannot look at my DNA without being concerned about patent infringement?”

“If these patents are enforced, our genomic liberty is lost.”

(Christopher E. Mason, of Weill Cornell Medical College and Jeffrey Rosenfeld, an assistant professor of medicine at the University of Medicine & Dentistry of New Jersey)

It is interesting to note that once again with a different set of circumstances, the future of our personal healthcare is again in the hands of the Supreme Court. Because Myriad is trying to patent our own genes, this case has far reaching impact on cancer as well as our rights as patients for many other diseases. The wrong decision could lead to terrible consequences. Let’s hope the Supreme Court gets this one right.

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There are some great articles below that I gathered information from. They also give more insight in to this important case.

1. bcation.org – Outlaw Human Gene Patents

2. forbes.com – Data War Reaches The Supreme Court

3. latimes.com. –  Who should own DNA? All of us

4. nancy’spoint.com – BRCA1 & 2 Gene Patents, A Landmark Case & A Rally at the Supreme Court