Last week's U.S. Supreme Court decision on Myriad's breast cancer gene patents sparked many comments from patients, the public and scientists. Here's what several Johns Hopkins experts had to say about the topic:

"I am thrilled with the Supreme Court's unanimous decision to overturn gene patents.  This was the only choice and will open up opportunities for patients, health care providers and the research community." 

Ada Hamosh, MD, MPH
Dr. Frank V. Sutland Professor
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University

"After all this time, it is gratifying that the US Supreme Court has ruled 9-0 that gene patents are invalid because they are products of nature. At the same time, the Court has taken a middle ground by ruling that patents on complementary DNA or cDNA are still valid. I would respectfully disagree with the latter ruling because complementary DNAs makes up about 1% of our genome as processed pseudogenes, and are also natural products. However, the decision is a real victory for the public because it opens up competition in gene testing for inherited disease. This should lower the price of testing for BRCA1 and BRCA 2 and allow for second opinions on test results. Since the ruling does not affect the patenting of process or use of genes, the biotech industry will still be able to patent their innovations arising from the knowledge of gene sequences and their functions."

Haig H. Kazazian, Jr.
Johns Hopkins University School of Medicine

"Like every controversial topic, there are pros and cons that have to be considered with the Supreme Court's decision regarding patenting of genes and specifically for the BRCA1 and 2 genes isolated and patented by Myriad Genetics. At its heart, this is a good thing for patients as it will allow for more options in the future, and indeed competition and laws preventing monopolies generally have been met with enthusiasm from consumers, businesses and politicians as it can lead to decreased costs and increased quality.  Arguments have also been made that this will "free up" the scientific process leading to more productive research for the betterment of public health. This may or may not be true, as the potential downside of the patent ruling is whether this will stifle scientific creativity and development due to fears of not being able to recoup initial investments into research as others have argued.  For now, the decision has been made, and it is likely that this will lead to increased competition for Myriad Genetics but the true impact remains to be seen. It should also be noted that while the Supreme Court's decision clearly stated that naturally occurring genes cannot be patented, synthetic DNA often created in the lab from mRNA (and a surrogate measure of the protein coding sequences of a gene) can in fact still be patented because they are not naturally occurring.  This leaves some intellectual freedom and space on how entities could still lay claims to gene products that are produced in the lab."

Ben Ho Park, M.D., Ph.D.
Associate Professor of Oncology, Breast Cancer Program
Associate Director, Hematology/Oncology Fellowship Training Program
The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

 What do you think? Tell us by adding your comments.

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Joining forces to beat childhood cancer and raise awareness, Johns Hopkins Pediatric Oncology, along with other cancer-related organizations, have been selected by World Wide Motion Pictures Corporation to receive a portion of the box-office proceeds from the North American release of the upcoming film, Ways to Live Forever.

According to the film's trailer, "12-year old Sam has leukemia, and although the adults in his life don’t want him to dwell on it, Sam wants to know everything about his disease and death, a possibility he might face. Together with his best friend, Felix, he embarks on a "scientific investigation" with questions, observations, evidence, reflections, and lists of all the things he wants to do someday -- like breaking a world record, flying in a blimp, kissing a girl for the first time, and experiencing what it’s like to be a teenager. They discuss ways they could live forever."

When you first think about it, living forever might seem like a blessing. You would never worry about death and could continue living life each day without worry of injury or illnesses that could possibly harm you. However, living forever, of course, has its downfalls. For one, you would out-live all of your loved ones and celebrations such as anniversaries and birthdays wouldn’t seem so special. Carpe Diem would have a different meaning and, in a sense, life would be taken for granted.

Besides the obvious meaning of "living forever," there are other symbolic ways to achieve the same thing. What kind of legacy do you want to leave for future generations?  It’s not often a question you think of, but how would you live forever?

Hear Sam’s thoughts on living forever in the film, Ways to Live Forever, which opens in theatres July 19-21.

More information the film, Ways to Live Forever.

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ASCO Press Conference

Dr. Gypsyamber D'Souza is interviewed by reporters at an ASCO press conference.

Dr. Gypsyamber D'Souza has been a steady presence at Johns Hopkins head and neck cancer clinics. You'd spot her carrying an iPad survey and containers that collect oral rinse samples. Today, the long-awaited results of her research were presented at a press conference at the American Society for Clinical Oncology meeting in Chicago. D'Souza's  multicenter, pilot study revealed that spouses and long-term partners of patients with mouth and throat cancers related to infection with the human papilloma virus (HPV)  appear to have no increased prevalence of oral HPV infections.  These long-term couples need not change their sexual practices, according to D'Souza and authors of the study, which was reported in the New York Times (scroll to the end of the article) and other media outlets. That's a relief to patients and their long-term partners. The scientists are continuing their studies on transmission of HPV, but the hope is that more widespread adoption of HPV vaccines can prevent these infections.

Information on HPV-related oropharyngeal cancer


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There was a single winner for the latest Powerball jackpot, but with Giant Food’s Triple Winner game, there are many winners.  For the past nine years, Giant Food has been offering customers the chance to donate $1 at their neighborhood Giant Food to receive a Triple Winner scratch card. Giant donates the proceeds from the campaign to the Pediatric Oncology Division at the Johns Hopkins Kimmel Cancer Center and to The Children’s Cancer Foundation. So, we’re all winners in this game.

If you buy a card, one winner will receive $10,000, but if you only get a tub of ice cream, you are still helping Giant Food in their commitment to raise funds for research for kids with cancer.  That makes us all winners!

Meet some of the wonderful patient ambassadors you will be helping:

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On June 2, the Kimmel Cancer Center at Johns Hopkins will host its annual Cancer Survivors celebration in collaboration with National Cancer Survivor Day. This special day, attended by cancer survivors, their families, and our staff, is filled with inspiration.

One of the highlights of this day includes our motivating keynote speakers. Jason Cherish is one of these speakers.

When 30 year-old Jason Cherish was diagnosed with stage three colorectal cancer in 2011, he didn't want to survive it, he wanted to pummel it. Jason is equal parts adventurer, entrepreneur, and warrior.  He set out to teach cancer a lesson, and he will share his unorthodox and irreverent battle-tested playbook with us.

Hear more of his story below and join us on June 2 to hear the rest of his inspiring message.

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June is the time for  a special day of celebration at the Kimmel Cancer Center at Johns Hopkins.  We hope you will join fellow cancer survivors, their families, and us on June 2 to celebrate National Cancer Survivors Day.  This special day is filled with inspiration, including keynote speakers, a survivor fashion show, exhibits, and children’s activities.  There will also be live music featuring local artists and The Maryland State Boychoir.

The Survivor Fashion Show has proven to be a hit in past years. Staff and patients at Hopkins will shine in snappy outfits provided by local clothiers.  Live music will accompany their walk on the Weinberg building runway as they are cheered and recognized for their strength, courage, and hope in the face of cancer.

Join us at our Cancer Survivors Day celebration.

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***This post was written by Deb Stewart, R.N., who leads a group of Survivor Volunteers in the Johns Hopkins Breast Center. In honor of National Volunteers Week, Deb pays tribute to her volunteer group and describes the value of volunteering. Like the volunteers we saw give their help during the Boston bombings, Deb's volunteers provide life-saving help and comfort. Volunteers everywhere: we salute you!

One needs only to raise their hand to volunteer--usually.  I have been a GS leader, Sunday school teacher, a room mother and bird club secretary.  Every volunteer experience enriches me and offers connection with others of like mind and purpose.   The greatest of my volunteer experiences belongs to my membership in a community of breast cancer survivors.  Diagnosed at age 25 more than three decades ago, I could not find anyone of my age with breast cancer.  I was invited to join a volunteer-led support group formed by Johns Hopkins where much of my healing would be addressed.  I signed on with the aim of being a volunteer group leader, which I did for three years.

Diagnosed with breast cancer 20 years later, I again looked for support and this time it would be from two Johns Hopkins Breast Center volunteers who would call me as I was making treatment decisions.  We connected through their stories and their compassion.  This would be my goal, to volunteer and to pass forward the same kindness.  Along the way, like the volunteers, I realized my support of patients is not about me; it is about the person I am serving.  This is the same with the walks and races for breast cancer; it is about the cause I am supporting, it is not about me.  

Today, I coordinate the activities of the Hopkins Breast Center Volunteer team, 37 women and one man, (32 have had breast cancer).  They tell me that they too are enriched through their volunteer experience.  I have heard volunteers who say that they are surprised to receive more than they give.  Another volunteer consistently says ‘thank you’ before she starts her volunteer day.   A new volunteer recently wrote an email that said:   “You and I talked some time ago about the ‘club’ of which none of us really chose to be a member, but now I feel, it is by choice that this involuntary club membership is turning into a community membership with a purpose. “  Our breast center Volunteers are a community of hope.  We have a mission of service and along the way find meaning and unexpected fulfillment.    Who would think having raising  your hand would lead to such an experience. 

Deb Stewart, BSN, RN
Nurse Navigator
Volunteer Coordinator for Johns Hopkins Breast Center

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Johns Hopkins faculty, research technicians, postdoctoral and graduate students at the Rally for Medical Research

Thousand of scientists, clinicians, patients, students and advocates rallied today in Washington, D.C. to support federal funding of medical research. Across the street, the American Association for Cancer Research held its annual meeting, with scores of scientists revealing the fruits of their research, much of it funded by federal dollars. We heard from legislators, scientists, patients, parents and celebs at the Rally for Medical Research. If you missed it, I captured a few moments on video to mark the event:

Video: Rally for Medical Resarch



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Savannah Outen, Bo Oliver and Leora Friedman

From left: Bo Oliver, Savannah Outen, and Music is Medicine founder Leora Friedman

Yesterday afternoon, singer Savannah Outen met Bo Oliver, a 16 year-old cancer patient at Johns Hopkins. She had spoken with him by phone a few times after learning about the Music is Medicine program, run by a group of Princeton students. The program encourages musicians to write and record songs for pediatric oncology patients, and proceeds from the song will fund research on these cancers, which are expected to be diagnosed in nearly 12,000 children this year. 

Bo told Savannah he wanted he wanted an uplifting song, and, with songwriter Tom Harrison, she wrote "Brave and True." And, for the first time, Bo heard Savannah sing his song yesterday. 

"I am strong.
I am brave and true...
...The world is smiling too."

Those are the lyrics that struck me yesterday when I heard Savannah sing. And, you might wonder how each of us can make a difference in the fight against cancer. Our senior writer has an answer, which she included in the following message in one of our recent publications:

"The story is told of a little boy who finds thousands of starfish washed upon the beach. How could he save them all? After all, what difference could one person possibly make? He reached down and threw one fish back in, then another. 'I made a difference to this one, and this one,' he said. Just suppose our community approached pediatric cancer in the same way. Suppose we could change how cancers are treated one child at a time. We can. We are."

"Brave and True" will be available soon on iTunes, and a video of Savannah's visit to meet Bo at Johns Hopkins will be posted in a few weeks.

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***This post was written by Anna Ferguson, RN, BSN, research nurse and leader of The Hope Project at the Johns Hopkins Kimmel Cancer Center.

"Hope is the thing with feathers that perches in the soul..."
-Emily Dickinson

...and also in the pleading eyes of your patient that looks to you to make something positive out of their bleak circumstances. I can tell him what the physician already has - that the medicines we're trying aren't working, that we don't know of any that will, that we will support him in any way we can, and that we wish it could be different. I will tell him all of that, and he'll still say, "But you're not giving up hope, are you?"

 He is in leukemia limbo hell, where you're not dying, but you're something short of really living. Where your blood counts keep you tethered to the hospital with bleeding and infection and transfusion needs lurking around every corner. Where, medically, there's very little to do except react to a variety of flares the body throws up. Where, as providers, we'll be saddened, but not surprised, when things take a turn for the worse.

So, where is the role of hope in this case?  Have we given it up, as he suggests?  Should we?  Should he?  The answer lies in helping this patient define what, besides the chance of a cure, brings him hope.  If we rely solely on fulfilling the hope of cure  in this case, we won’t have much to offer him.  If we, however, react by saying “I can only hope for the things that you hope for. We’re telling you that we don’t know of any medicines to make your leukemia go away. Tell me what other things you’re hoping for. Think about today and tomorrow and next week, and tell me what brings you hope. Tell me what brings your life the most meaning and joy.”

Then, he thinks a little, cries a little, and tells you what he hopes for – for tomorrow, for next week, for next month.

...that he gets to his grandson's school play
...that he’s given a respite from nausea this weekend
...that he doesn’t  need to stay for transfusions on Tuesday
...that the snow doesn't keep his sister from coming to visit
...that his medical team can find a way to juggle his meds and transfusion needs so that he can spend a weekend away at the beach with his wife
...that his blood counts look a little better today
...that his football team wins this weekend

As a provider, this now serves as an anchor for future conversations and decisions.  This will be the discussion you refer back to and remind him of when the next crossroads or decision point is reached.  You’ll be able to say, “I want to check in with you again about your hopes.  Are the treatment decisions we’re making allowing you to accomplish the things that mean the most to you?”  

This man wants to live a long time.  Reframing his hopes to those that are attainable and realistic won’t be a magical moment where he leaves your office, skipping, with bluebirds chirping on his shoulder.  He’ll be sad, contemplative, and thoughtful.  But, he’ll call you a couple of days later with joy and a sense of accomplishment in his voice saying, “I did it.  I made it to William’s school play.  I wasn’t sure I was going to, but I did it.” 

“Now,” he’ll say, “let’s get started on making that beach weekend happen.” 

“We’re with you,” you’ll say, and you could swear you heard the faintest bluebird chirp in the background.

On November 30th, the Johns Hopkins Kimmel Cancer Center community convened a large audience for Grand Rounds to hear the first presentation of  The Hope Project.  This project, led by a multi-diciplinary team from our Cancer Center, seeks to elevate the concept of hope beyond its association with cure.  To do this, the project aims to help cancer care providers talk with patients about hope in a realistic and nurturing way that encourages patients to define and refine over time what it is that brings them hope.  The presentation was an important beginning to our conversations about how hope can help our patients manage their illnesses, independent of their prognosis.  During the presentation, our own patients spoke eloquently about how the small, everyday hopes are the things that light their fire, keep them going, and inspire them.  We heard, unequivocally, that hope matters to our patients and talked about how we, the providers, can play a positive and influential role in their experience of hope.  We learned that asking the question: “What are you hoping for?” opens doors, starts conversations, keeps conversations going, personalizes care, and lets patients know that hope is about them, not their medical outcome.

Watch The Hope Project presented on Nov. 30 at Grand Rounds.


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