YSC Detroit F2F Hosts Survivor Education Event Funded by YES Fund Grant


One beautiful, breezy Sunday in May, I was sitting in my new hair stylist’s chair discussing my hair loss issues. We talked about my breast cancer treatment, which caused baldness,  hair regrowth … having a baby … more hair loss … and restarting Tamoxifen. AGAIN, more, but extreme, hair loss.

I was using a shampoo and conditioner called Nioxin, which was supposed to help clean and stimulate the scalp creating the best environment possible for hair growth. So far, it had been doing an okay job. My stylist told me what I was doing wrong and what I SHOULD be doing for better results.


I had to ask, “Would you have any interest in coming to one of my support group meetings to educate my friends about hair loss as well?” This is often a big topic of discussion at our Face 2 Face (F2F) meetings. It’s bad enough to have to lose your hair once, but to then watch it fall out in clumps DAILY after it all came back in? Really? Enough!

Theresa welcomed my idea with open arms and offered even more: “How about you bring your group into the salon for free scalp treatments (value of $25 each)?”

To turn it into a relaxing and social evening, I applied for a YES Fund Grant to help cover the costs of the event. Applying was an easy process, and, with the help of YSC’s Regional Managers, Medha Sutliff and Mollie Toland, we were approved and ready to move forward in no time at all.

Our Nioxin Hair and Scalp Event took place on June 26th at Theresa and Friends Hair and Nail Salon. Each of the 15 women who attended was given a consultation and a picture of their scalp under a microscope. Once they were given the treatment, they were shampooed, styled and then shown their squeaky clean scalp under the microscope again.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

What happens with our scalps is like a fingernail, our hair follicles have a cuticle that  needs to be removed to enable new hair growth to proceed. Dead skin cells are washed away with the Nioxin Scalp Treatment to do just that. It’s like micro dermabrasion for the scalp. What’s the main ingredient? Sugar!

The event was a complete and utter success. The happy, tearful look on the faces of my friends leaving the salon with beautifully styled hair and a treatment plan for their hair loss was enough to make my year.

It turns out, I was able to put Theresa and Friends Hair and Nail Salon in contact with the cancer center where I was treated, Van Elslander Cancer Center. Together, they are planning more events for other cancer groups. I’m so thankful there are people are out there who have a desire and drive to help others!

YES Fund Grants

The purpose of the YES (You Are Not Alone Education for Survivors) Fund is to encourage YSC F2F Network members and State Leaders to organize educational events by providing reimbursement for qualifying programs.

These funds can be used for events that not only promote the mission of YSC but also allow survivors a time to network, share resources and receive valuable education. Priority will be given to educational events that follow YSC’s strategic priorities and are specific to the body of knowledge related to research, diagnosis, treatment, education, survivorship and/or other issues related to young women affected by breast cancer.

View the 2013 YES Fund Guidelines and Application (or download in MSWord).

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YSC: 15 Years of Knowledge, Resources and Support

YSC Turns 15Young Survival Coalition was founded in 1998 by three young women who were all diagnosed with breast cancer before the age of 35 to address a lack of information, support groups and research tailored specifically for this population. In the 15 years since, YSC has become the largest and most influential national nonprofit organization that supports young women affected by breast cancer. But, we still need to do more!!!

YSC’s wealth of resources and knowledge has come from listening to you, the women we exist to serve, and has helped us, with collaboration from the medical and research communities, develop programming just for you. Armed with these relationships and your feedback, YSC endeavors to reach and support the approximately 13,000 women aged 40 or under who are diagnosed in the U.S. every year … and we need your help!!!

To commemorate Young Survival Coalition’s 15th anniversary, we have been posting a “15 Facts” or “15 Tips” page on the 15 of each month on our website. Our lists began in January with YSC History and Accomplishments and will conclude in December. Upcoming topics will include: questions to ask your doctor, ways to give back to YSC, advances in treatment, ways to take your body back and intimacy. Have you seen these incredible resources and shared them with friends or family?

If you are a breast cancer survivor, a health care professional or someone interested in learning more because breast cancer has touched either your life or the life of someone you care about, we hope these lists will illustrate the scope of services YSC offers like YSC”s Newly Diagnosed Resource KitHelping Children Cope with Breast Cancer and the brand new What’s Next: A Young Women’s Post-Treatment Navigator.

If you are already familiar with our resources, attend a Face 2 Face local network (YSC F2F) or are a member of our online YSC Community or one of our dedicated volunteers, please take a moment to click the Facebook Like or Tweet buttons below and visit our Facebook page (or your favorite social media site) to share this month’s 15 Resources for Young Women or a previously published lists (see below).

Doing so will help us get the word out and meet the goal of supporting EVERY young woman in the U.S. who has been diagnosed with breast cancer! We cannot reach everyone who needs us without you!

Thank you all!

Previously Published Lists

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YSC Advocates Arm Themselves with Knowledge at Project LEAD®

Last week, my colleague Cindy Kicinski, YSC South Regional Field Manager, and I had the honor of attending Project LEAD® hosted by the National Breast Cancer Coalition (NBCC). Project LEAD® is a scientific training program for breast cancer advocates. The six-day, intensive coursework prepares individuals to engage meaningfully in conversations about breast cancer advocacy, activism, research and public policy.

From July 21–26th, we camped out in beautiful La Jolla, California, to take part in this important venture. YSC colleagues told us beforehand “they’ll keep you well fed” and “you’ll feel like you’re back in school” (both true), but no one prepared us for the sheer amount of information and enthusiasm that we would experience in that week’s time.

Fifty dedicated advocates came from around the country and Canada and spent the days listening to experts, participating in study groups and reviewing a very large binder of reading material.

YSC Advocates at Project LEAD®

From left to right: Megan McCann, Senior Manager, National Programs; Mikala Edwards, Arizona State Leader & Phoenix F2F Leader; Loretta North, Kansas City Volunteer; Cindy Kicinski Regional Field Manager (South); Jen Linares, Illinois Sate Leader; Leslie Hammersmith, Champaign-Urbana F2F Member; T. Eatmon Atlanta F2F Member; Amber Gillespie, Houston Heights F2F Leader & TdP West Coast Rider; Erin Price-Schabert, Virginia State Leader, DC Metro F2F Leader & TdP East Coast Rider.

At the end, we took away a greater knowledge of how breast cancer happens, what existing regimens can target these pathways and what promising treatments are in the pipeline. With this information, we are all better equipped to take part in decision making around research, public policy and community activism, for example.

Throughout the week, we heard from NBCC team members, including President Fran Visco, who emphasized the role we could play in helping NBCC reach its Deadline 2020, a concrete goal to end breast cancer by January 1, 2020, through strategic research on the primary prevention of breast cancer and the prevention of metastases (the spread of breast cancer beyond the breast tissue). We encourage you to learn more about how you can support this important program.

We are so proud to be part of an illustrious group of Project LEAD® graduates, past and present, and were especially happy to share the experience with others close to YSC (see photo at right). It is truly a testament to YSC’s strong and dedicated community that so many advocates took a week out of their busy schedules to fight for the end of breast cancer.

Thank you so much to the Project LEAD® staff, faculty, mentors and fellow attendees who made this such a special and inspiring week!

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If I Can Do It, You Can Too!!!

Me, at right, with fellow survivor Karin at the start of the 2012 YSC Tour de Pink West Coast.

Me, at left, with fellow survivors Karen and Carol at the start of the 2012 YSC Tour de Pink West Coast.

Most people that have been around me in the past year probably know that I have been living my life loosely based on two phrases post treatment: Life is short. Live life to the fullest.

Having a support group and incredible friendships made up of young breast cancer survivors is truly a blessing to me. It can also be really hard. The sad reality is that until a cure is found, not all of my friends are going to make it. How do you deal with that?

I deal with it by doing my best to not take life for granted. I deal with it by living my life to the fullest. I deal with it by challenging myself to do things I wouldn’t have done before I had cancer. I deal with it by giving back to the organization that has given so much to me in the past three years. I deal with it by riding in the YSC Tour de Pink (TdP).

If you had met me before I had cancer you would have thought, there is no way that this girl can ride 200 miles in three days! I would have agreed with you. If you had met me before my first TdP last year you probably had doubts still. I might have had a few doubts too. But I overcame my fears, doubts and my leftover aches and pains from chemo. There is something so powerful in setting such a physical goal and attaining it.
Ride with Me This Year
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Offer good until 11:59 p.m. PT 7.21.


I no longer doubt whether I can do something that I set my mind to. And you shouldn’t either. If I can do it, anyone can!

Please consider joining me on either coast this year for an amazing adventure in honor of all of my YSC sisters.

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YSC Tour de Pink – Why? Well, Why Not?!

Me, at far right, with fellow survivors at the finish of the 2012 Tour de Pink.

Me, at far right, with my fellow survivors at the finish of the 2012 Tour de Pink.

Many people think I ride in YSC Tour de Pink because I have been involved since day one and think “how can I not.”  In all honesty, that is a part of it, but the biggest reason I ride is … because I can.  Recently someone asked me how I get up every day.  After all, I have stage IV breast cancer with metastasis to my brain, so how do I get up, go to work, run errands, go on vacation, go out to dinner, have fun etc.?  My response is, “How can I not?”

What is the point of going through treatment and trying to get healthy if you are not going to enjoy every minute?  Realistically if cancer doesn’t kill me, something else will, and I have zero control over that. So I want to enjoy all the time I have and all the experiences I can make.

Tour de Pink is one of those experiences.  Since Matt Purdue and I started the East Coast Tour de Pink in October 2004, it has been my favorite athletic event EVER! I love being on my bike, but more than that, I love the community we create on the days we are all together — riders, volunteers, supporters, logistics and staff.  I always say if the world could be like the traveling community we create every year it would be an amazing world — no war, no hunger and everyone is happy.  And we do create this world for three whole days.
Ride with Me This Year
Register using code
to save $50* on your reg fee!
Offer good until 11:59 p.m. PT 7.14.


I challenge anyone to experience what we create in these three days.  It’s a no-blockheads-allowed event.  Everyone takes care of everyone else both on and off the bike.  The people you meet become life-long friends even if you only see them once a year.  It is as if you saw them yesterday.  There is a camaraderie, compassion and emotion that I have never seen before and do not see or experience anywhere else.

This is why I ride.  Because I can and because of the people this ride has brought into my life.  Once a year, every year, for as long as I can pedal that bike.

Join me.  This truly is the ride of a lifetime.  I promise!

Editor’s Note: Lisa J. Frank is the current YSC board president, a founding member of the Young Survival Coalition, the co-founder of YSC Tour de Pink and the author of the blog You’re Crying on my Cashmere.

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Remembering Dr. Irma Russo, Dedicated Breast Cancer Researcher

Me, at left,  with Drs. Jose and Irma Russo

Me, at left, with Drs. Jose and Irma Russo

In 2006, when I was receiving treatment for Stage III breast cancer at Fox Chase Cancer Center in Philadelphia, I had no idea that on the other side of the building was a researcher who had been working diligently for over 30 years trying to find a way to prevent the disease that had ravaged my body.

Dr. Irma Russo was a pioneer in identifying the mechanisms of breast cancer prevention and was working to develop a hormonal treatment for disease prevention using the pregnancy hormone hCG. I was very sad to learn that Dr. Russo passed away from ovarian cancer last week. We young breast cancer survivors have lost one of our champions.

I first met Dr. Russo a few years after my diagnosis. She and her husband, Dr. Jose Russo, had put together an innovative program for breast cancer advocates called “Researcher for a Day.” We had the opportunity to shadow researchers and actually participate in their workday with the goal of making us more informed advocates.

Some of us learned how to seal chunks of tissue in paraffin blocks. Others learned how to analyze the genetic instructions in rat RNA. I had the daunting task of dissecting a rat and removing the mammary gland in order to extract the RNA for analysis. Throughout it all, Irma and Jose went around to each group of advocates encouraging and educating us. Having fought the disease as patients, they wanted to teach us how the disease was fought in the lab.

Over the next several years I got to know Dr. Russo better as I worked with her on several research projects. Once she had helped train advocates in the lab, she was eager to incorporate the unique perspective of a breast cancer patient in helping her to become a better researcher. She often asked survivors to participate in writing research grants and solicited our recommendations from the very beginning of the process.

Most recently, Irma and Jose Russo participated in the Young Survival Coalition’s Research Think Tank to help YSC determine the most pressing research questions to improve the quality and quantity of life for young breast cancer survivors.

When YSC was looking for researchers to be a part of this groundbreaking initiative, the Russos were some of the first to sign on.  To YSC’s invitation to participate, Irma promptly  responded, “The risk of breast cancer in young women is a topic very dear to me, and I will be quite pleased in participating in this symposium in collaboration with scientists and advocates.”

Not only did the Russos “sign on,” but they participated as a part of two work groups:  the Pregnancy workgroup and the Identification of Factors that Increase the Risk of Breast Cancer in Young Women workgroup. At the meeting, Irma was passionate about working with advocates and in particular young survivors to share her ideas and research.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

Dr. Irma Russo and her husband, Dr. Jose Russo, celebrating their 45th wedding anniversary at the first YSC Research Think Tank meeting.

In fact, the Russos elected to spend their 45th wedding anniversary at the YSC Research Think Tank because they felt so strongly about YSC’s research agenda.  With a little champagne and some cake, we celebrated their special milestone with them.

Dr. Irma Russo made a tremendous impact in the world of breast cancer research over the years. Together with her husband, she published five books and more than 200 research articles. As one colleague recently commented, “The collaboration between Jose and Irma was so deep that it was, at times, impossible to determine where one ended and the other began.”

Anyone who saw the two of them together recognizes the truth in this statement. But she was also very much her own individual — founding the League of Women Against Cancer in 1994 whose mission is to provide education and help for women with cancer and deciding several years ago to learn to scuba dive at the age of 66.

Until the time of her death at the age of 71, she dedicated her life to better understanding and prevailing over breast cancer. While her legacy will live on in her many achievements in research and the more than 50 physicians and scientists she trained and mentored over the years, it was her willingness to give a scared young mother who knew nothing about breast cancer the power of knowledge and the support of her convictions that will forever remain with me. She will be missed.

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CWS Knocks One Out of the Park

Last Wednesday, I was in a sweltering Washington, D.C., to attend the annual Congressional Women’s Softball game with Young Survival Coalition’s CEO Jennifer Merschdorf. This would be my first time attending the event, but it was apparent what a difference five years had made!

Members of the organizing committee told me how in 2009, the women of Congress played members of the political committees in front of a small crowd for the inaugural game.

Now in 2013, the Congressional Women’s Softball game has become one of the most anticipated events on the Hill, with women of Congress playing their new rivals, the Bad News Babes (women of the Washington Press Corp), and packing the Watkins Recreation Center with over 1,000 attendees!

Young Survival Coalition is so honored to be a part of this event.

YSC Volunteers at the 2013 Congressional Women's Softball game.YSC Volunteers at the 2013 Congressional Women's Softball game.

YSC Volunteers at the 2013 Congressional Women’s Softball game.

As soon as we got to D.C., I could feel the energy surrounding this game. Jennifer and I were able to attend the last volunteer coordination meeting where we talked to them about YSC’s programs and where the money from the game would go.

Volunteers included staff from around the Hill, members of political committees and employees at various banks and law firms in the D.C. area. We were so thankful they were able to take the time from their incredibly hectic schedules to work the game and for showing such enthusiastic support for YSC.

Throughout the next few days as we met with players of both teams and their supporters, I was thrilled to experience the high energy surrounding this event. Journalists, politicians, staffers, interns and aides, all of whom regularly spar on the political battlefield, now come together in a truly bi-partisan effort to raise awareness that young women can and do get breast cancer.

Echoes of the Press Corps team captain Abby Livingston’s sentiments were heard, “I think what’s amazing is that you could not have had this game twenty years ago.  It’s really great that there are this many women in Congress.”

The softball game introduces women on the teams to a small community of their peers who understand the political work culture of D.C., and can give advice and support to the same cause: supporting YOU, the young women affected by breast cancer.

Over a dozen young survivors from the Washington D.C. Face 2 Face (F2F) Network were present, meeting with some of our nation’s biggest lawmakers to strengthen the voice of the breast cancer community.

This year, it’s exciting to say that the organizing committee more than doubled their fundraising efforts and raised over $115,000! The money will go to providing education, support and empowerment to all young women affected by breast cancer across the nation.

2013 Congressional Women's Softball Game Results and Awards

Please take a moment to join me, my colleagues at YSC and all the young women we serve in thanking Kate Houghton, Atalie Ebersole and Natalie Buchanan of the organizing committee as well as the Congressional and Press teams for dedicating the past two months to preparing for and playing in last week’s game. A special thank you to our sponsors McDonald’s, Novartis, PepsiCo and Toyota and our many partners for their continued commitment. Last, but certainly not least, YSC’s D.C. F2F  leader Erin Price-Schabert who organized the survivors’ participation and put a face to young women with breast cancer in D.C.

THANK YOU and until next year!

Learn more about the Congressional Women’s Softball game and check out the 2013 rosters at the official event website.

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Breast cancer stole my pretty, but I snagged it back.

Ten days after my diagnosis, I started chemotherapy. I decided to take some sexy photos before my mastectomy. I never intended to show them to anyone. These photos were just for me. I wanted to capture and freeze this time in my life — my confidence and my body — before I entered the unknown.

amanda nixon guest blog 03.jpgAll of my hair fell out about three weeks later. My right breast was removed. I had daily radiation treatments to my bare chest wall for eight weeks. I had to bare my chest to doctors, nurses, medical students and surgeons on a weekly basis. This was the most humbling experience of my life.

I spent an entire year without my right breast.  I barely felt alive, let alone beautiful. My fingernails blackened, my eyebrows diminished, I stared at myself in the mirror – bald and lopsided – and the only thing I could do was remind myself that “pretty is as pretty does,” but I sure didn’t feel pretty. Breast cancer stole my pretty until I stumbled upon www.keep-a-breast.org.

I had been searching online for a photographer that would be willing to take photos of me with a single breast but was not impressed with what I was finding. I was interested in a snapshot of this time … single photo where I could see a glimmer of the old confident me would suffice. I was just about to let that wish go when I found Keep A Breast.

Keep A Breast made plaster molds of women’s busts and auctioned them off to raise funds for breast cancer awareness. I thought this was just fantastic. I emailed right away and days before my reconstructive surgery, I had a plaster mold made of my torso by the Co-founder of the organization, Shaney jo Darden. When the mold was complete, she took a photo of me with my cast, and we hugged goodbye.

Several months later she invited me to the Roxy Headquarters for their annual Think Pink event and, to my surprise, presented me with my beautifully painted cast in front of the entire company. The cast was inscribed, “No Gain, No Loss, Only Change.” I cried when I first saw my form because it was the first time I had seen myself as beautiful since my diagnosis.

My completed cast.

My completed cast.

Seeing myself as a work of art, with my body immortalized, allowed me to appreciate the beauty of my body at that time: the balance of femininity and strength.  The cast helped me see the juxtaposition of my two sides and life. It was time for me to embrace life and get my sexy back.

I opted for a modified micro-vascular DIEP flap reconstruction on my right breast. Basically, the doctors created a breast out of my stomach tissue. After this reconstruction, I finally felt balanced: both physically and mentally.

I slowly began dating and found myself in a long-term relationship with an amazing man who loved my scars. And everyday I wake up to see the man-made breast, the scar from my left hip to my right hip, tattooed nipple and I remind myself: THIS IS BEAUTY.

Ironically, in 2010 I helped start and run the support program that allowed me the opportunity to see the beauty in my form and myself six years ago. Partnering with the Young Survival Coalition in 2012, the Treasured Chest Program offers a variety of events throughout the country where breast cancer survivors can receive their own breast cast, meet other young breast cancer survivors and participate in other support activities.

The Young Survival Coalition/ Keep A Breast Foundation’s Treasured Chest Program is a free program that provides DIY Breast Casting Kits to any breast cancer survivor who would like to make a mold of their torso at any point in their breast cancer journey (before surgery, after lumpectomy/mastectomy or after reconstruction).

Through the Keep A Breast Foundation and Young Survival Coalition partnership, we have expanded our reach to more young women diagnosed with breast cancer, as well as our ability to offer education and support.

Please share our program in your community and help other women find their beauty.


Amanda Nixon

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The Women of Congress & Bad News Babes Battle for YSC

Me throwing out the first pitch of the game in 2012.

Me throwing out the first pitch of the game in 2012.

2013 is a year of many milestones for YSC: in November our organization turns 15, and, in just a few weeks, the 5th Annual Congressional Women’s Softball Game will take place.

On Wednesday, June 26th, Women Members of Congress and the women of the Washington Press Corps will once again take to the field to benefit YSC. I’ve had the honor of attending this amazing event for the last two years and cannot wait to head down to D.C. for this year’s game.

Since the first pitch four years ago, each spring finds our female elected officials getting up early (@ 7 a.m.!) to practice and prepare for their common enemy: the press corp’s Bad News Babes, who won last year’s exciting 13-10 battle.

I’m sure the Members of Congress are itching to win the 2013 game trophy. The reporters must be worried, because I’ve heard there’s been a little pre-game spying going on and even some smack talk – all in good fun.

This year is special not only for being the fifth anniversary of the game, but it is also a very special anniversary for one of the game’s co-founders, Rep. Debbie Wasserman Schultz (D-FL), who is now a 5-year breast cancer survivor.

In 2009, Wasserman Schulz, along with Rep. Jo Ann Emerson (R-MO), reached across the aisle in an unprecedented, bi-partisan effort to support women’s health and raise public awareness of breast cancer in young women.
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Every year, leaders and luminaries from across U.S. politics and journalism have attended this game and lent their support to YSC and all young women affected by breast cancer. I would be thrilled if you could join me at this year’s game to help us applaud the dedication of all the players and coaches and cheer on both teams and thank them for their efforts.

Tickets are available online for only $10. If you can’t make it to D.C. for the game, please consider making a donation to this event, which has raised more than $200,000 for the programs, support and resources that YSC provides to young women affected by breast cancer every day.

If you can’t attend the game, be sure to catch the play by play on our Twitter and Facebook and Instagram pages. If you are at the game, please post your photos and use the game’s hashtag: #CWSG.

I’d like to also thank lead partner McDonald’s for sponsoring this game for the third straight year as well as Novartis, PepsiCo and Toyota and our many partners committed to fighting breast cancer in young women. A complete list of our sponsors is available on our game website.

The women Members of Congress will be captained by Sen. Kelly Ayotte (R-NH), Sen. Kirsten Gillibrand (D-NY), Rep. Shelley Moore Capito (R-WV) and Rep. Debbie Wasserman Schultz (D-FL).

The D.C. Press Corp team will be captained by Brianna Keiler, CNN; Abby Livingston, CQ Roll Call; Amy Walter, Cook Political Report. Dana Bash, CNN, and Carrie Budoff Brown, Politico, are Captain Emeritus; Learn more about the Congressional Women’s Softball game at the official event website.

The 2012 Congressional Women's Softball Teams.

The 2012 Congressional Women’s Softball Teams.

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Human Genes Are ‘Products of Nature’? Isn’t This A No-Brainer???!!!

In a landmark case today, the United States Supreme Court held that human genes are “products of nature,” and cannot be patented. I don’t know about you – but to me this seems like common sense.

However, like all things in life, the complexities are in the details. For instance, the Court also determined that composite DNA (cDNA) which is synthetically created is entitled to patent protection.  So what does all of this mean? And what is cDNA? US Seal

Let’s look at what we know:

·         Mutations in either BRCA 1 or 2 genes predispose a person to certain cancers including breast and ovarian cancer. 

·         These gene mutations can be passed down from generation to generation, from either the mother or the father’s side. 

·         With a genetic mutation in BRCA 1 or 2, a woman is five times more likely to develop breast cancer than a woman in the general population. 

·         Most important, we know that women diagnosed with breast cancer under the age of 40 are more likely to have these genetic mutations. They are therefore frequently referred for genetic counseling and testing.   

If you haven’t been following the Supreme Court case, here it is in a nutshell:  Myriad Genetics is the company that discovered the location and sequence of the BRCA 1 and 2 genes and developed a test to determine if a person has a mutation of either of those genes. (Side note: this is the test Angelina Jolie used that received so much media attention recently). Because Myriad held and enforced the patents on BRCA 1 and 2 genes, it was the ONLY company that could conduct testing for mutations.  These tests cost upwards of $3,000. So if you wanted to be tested for the mutation and didn’t want Myriad to do the testing or if you wanted a second opinion … it was not possible! Myriad was the only company allowed to do the testing.

In court, Myriad argued that the company’s discovery of the location of BRCA 1 and 2, as well as its ability to extract those genes for testing, entitled it to a patent on BRCA 1 and 2. The Supreme Court has now rejected those claims. The Court stated, “Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.” 

The Court did find that, “the lab technician unquestionably creates something new when cDNA is made.” It therefore, can be patented. What is not clear (to me) from the Court’s decision is the role of cDNA in Myriad’s testing and whether its finding that cDNA can be patented affects Myriad’s exclusive claims to BRCA 1 and 2 testing. 

As I see it, opening the door to healthy competition which could lower the cost of genetic testing and make it appropriately accessible to more young women would be a great outcome; allowing other companies to perform BRCA testing could allow people to obtain a second opinion – something that was not previously possible because of patenting; and this decision could aid breast cancer researchers by providing greater access to information related to BRCA 1 and 2. 

Regardless, the Supreme Court’s decision that human genes cannot be patented is an important one. It establishes precedent that no company owns the rights to BRCA 1, BRCA 2, or any other human gene – and that is important for all of us.

However, it remains to be seen how the Supreme Court’s decision will alter current practice. Young Survival Coalition is hopeful it means that Myriad and other companies will continue to invest in technology and testing that helps us to better understand the origin of and/or risk of developing cancer that would ultimately improve patient outcomes.

I guess the question that needs to be asked is – could this decision discourage companies from investing in other gene mutation identification and/or tests that we don’t even know about yet? I don’t know the answer – but I think the question is an important one to ask.

While many people are applauding the Supreme Court today, I am giving them more of a pat on the back. To me, not allowing the patenting of human genes seems like a no-brainer. In the end, patients need to be the number one focus of our medical community, not profits.

The entire text of the decision can be found here.

We’d like your opinion! Please leave a comment below and tell us what YOU think.

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