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Fall 2013/Winter 2014 1 ISSUE 23 TheVoice FOR PREVENTION, TREATMENT, AND POLICY WINTER 2013 - 2014 What’s Inside We’re in the Headlines...2 Personalized Medicine: The National Hype or Hope?...3 Research Awards Luncheon...4 Center for Stop Cancer Now! 5k...6 Women & Families We are dedicated to Cancer Hotline: Helping a Woman Who Helps Millions improving the health and Dr. Harriet Lerner, a psychologist and therapist, as The Truth of The Universe, others as, safety of adults and chil- is best known for self-help books that make it “It’s simply a personal choice.” dren by using research to easier for us to navigate the swamps and quick- It wasn’t only the differences of opinion that sands of difficult relationships. You’ve probably develop more effective threw me. Around certain decisions there heard of her New York Times bestseller, The treatments and policies. was 100% agreement among professionals, Dance of Anger, and, most recently, Marriage The Cancer Prevention and it still didn’t feel right for me. They all Rules: A Manual for the Married and The assumed that, of course, I would want and Treatment Fund is Coupled Up. reconstruction so that I wouldn’t be our major program. We first met Harriet over the phone when she “disfigured” and that I should make this www.center4research.org was diagnosed with breast cancer. Harriet tells decision before I even had the surgery to Twitter: @NRC4WandF us, “I’m a person who’s given advice to millions remove the cancer. of people worldwide. But, when I was diag- Q: Where did you turn? nosed, well, I was the one who needed expert The Cancer advice.” She agreed to be interviewed for our A: While I’ve had a lifetime of experience newsletter and to serve on our Advisory Board. giving clear and calm advice to others, I Prevention and needed some good advice Q: How did you react Photo Credit: Sunflower Publishing/Jason Dailey myself this time. To be Treatment Fund to your diagnosis of honest, I couldn’t think invasive breast can- Our Cancer Prevention straight at all because anxi- cer? and Treatment Fund ety turned my brain to helps adults and children A: I didn’t ask, “Why me?” mush. While readers of my My mother and sister had the books surely assume that reduce their risk of get- diagnosis, as did many of my I’d be a clear-thinking ting cancer and helps dear friends and colleagues. researcher on my own everyone get the best The question I asked myself behalf, nothing is further possible treatment. was, “What do I do now?” from the truth. There were as many different www.stopcancerfund.org What I had going for me answers to this question— was the ability to ask for Twitter: @cancer_fund from doctors and just plain help. I believe that we’re folks—as there were people CFC # 11967 here to help each other out. that I asked. Some recom- I’m also lucky to be well mendations were presented Continued on page 7 NRC in the Headlines! Chicago Tribune Board of Directors Lawsuits pile up over popular birth controlSeptember pill 15, 2013 George Thomas Beall Managing Director New tanning bed warnings proposed Ogilvy Public Relations Washington Post Stephen Bozzo, JD May 7, 2013 Attorney-At-Law Washington Post August 6, 2013 Sarah Deutsch, JD Vice President & Associate General Counsel Verizon Communications Still more work Newto doScrutiny on forcancer Medical Devices? Ben Gitterman, MD New York Times Associate Professor November 18, 2013 Pediatrics and Public Health Children’s National Medical Center New Concerns on RoboticNew Surgeries York Times Mary G. Hager, MA September 9, 2013 Writer Nancy Hardt, MD Boomers’ embrace of devices gives Star Tribune Professor and Associate Dean September 15, 2013 University of Florida College of rise to new med-tech age Medicine Judith L. Harris, JD Partner, Reed Smith Here’s a recent sample of our impact on the news: Alan Mendelson, LLD Axion Venture Partners We were quoted in the New York Times in an We were quoted in the Washington Post advo- Tiffany Russo article about external cardiac compressors—life- cating for stronger regulation of tanning beds, de- Associate General Counsel saving devices for emergency situations—and scribing the FDA’s proposal as “very weak.” Verizon Communications how the FDA never required studies to prove We were quoted in the New York Times in an Omega Logan Silva, MD that they are better than manual CPR. Former President, American Medical article on the under-reporting of problems with Women’s Association NRC President Diana Zuckerman explained in a robotic surgery in general and the da Vinci system letter to the editor of the Washington Post in particular, reminding readers that reports of Duchy Trachtenberg Former Councilmember that our Center has been working for over a dec- serious problems that are made to the FDA repre- Montgomery County, MD ade on reducing patients’ fear and confusion sent only “the tip of the iceberg.” about “cancers” that many experts now agree are Susan F. Wood, PhD Associate Professor not really cancer, because they don’t spread and Dr. Zuckerman was interviewed by NBC televi- George Washington University aren’t harmful. sion about a permanent form of birth control called Essure that has been causing thousands of Diana Zuckerman, PhD women debilitating pain: “We really have no idea President We were quoted in the Chicago Tribune saying NRC for Women & Families that Yaz and other oral contraceptives that con- what the long-term risks are” of these metal coils tain drospirenone increase the risk of dangerous implanted in women’s fallopian tubes. We can’t be bought. blood clots and “shouldn’t be on the market because there are so many safer alternatives.” Dr. Zuckerman wrote articles for the Huffington Our Center doesn’t Post and Rodale.com about unanswered ques- accept funding from In the Star Tribune and in a Healthcare Pol- tions about Essure birth control and about the drug companies or icy Podcast, Dr. Zuckerman explained to read- government shutdown over the Affordable Care Act. device manufacturers, ers and listeners how medical devices are tested so we rely on the and approved, an increasingly important topic as generosity of individual boomers go bionic, replacing hips, knees, and Brandel France de Bravo was interviewed by the donors. You can other body parts. Did you know that many Spanish language TV network Telemundo about donate online at devices that our lives depend on were not studied the increasing number of teenagers getting cos- in clinical trials? metic surgery. stopcancerfund.org. Page 2 Health3 Matters Personalized Medicine: Hype or Hope? You’ve probably seen headlines declaring Sounds great, right? Research suggests the “new age of personalized medicine.” that this approach can result in better Maybe you’ve wondered: if medicine is health for patients. For example, a undergoing a radical shift, shouldn’t my doc- recent study showed that lung cancer tor have mentioned it at my last check-up?! patients whose treatment is chosen What do these changes mean for me? based on their particular genetic infor- If you know your blood type, you already mation live longer. During the last two know something about “personalized medi- years, one out of three new drugs cine.” So, what’s really new here? approved by the FDA falls into this genes, but if you don’t smoke, put on “personalized medicine” category. And med- weight, or come into contact with certain Scientists now realize that a lot of the names ical schools are developing “personalized we use for diseases, like “lung cancer” or chemicals, the genes that increase your medicine” programs to train the next gener- risk may never cause you any harm. “high blood pressure,” are too general. In ation of doctors in these new methods. fact, what we think of as a single “disease” is The pharmaceutical industry is adapting often collections of many conditions that What’s in it for you? a little more quickly to personalized experts have lumped into the same category. As a patient and consumer, what is the best medicine than other parts of the For example, there are many types of breast way to take advantage of this new approach healthcare system. The potential profits cancer, such as ER+, Her2+, or triple nega- to medical care? Fortunately, you don’t for them are great. Although personal- tive. Each of these “subtypes” has its own need to get an advanced biochemistry ized medicine means developing drugs genetic cause and comes with different treat- degree to learn about personalized medi- targeted to relatively small numbers of ments. With this in mind, “personalized cine, although it might help to become patients, when proven effective, those medicine” is all about getting as specific as familiar with a few keywords (see box at drugs can command a very high price possible. It’s about figuring out which specif- left). And, when you need to make a medical tag. ic type of disease a patient has and using that decision or even if you are just having a rou- So what should you do? Should you get information to provide the best treatment for tine exam, it’s a good idea to ask your doctor tested now or wait for the prices to come him or her. if there are any aspects of your care that down and the medical profession to could be tailored to your catch up to the science? That depends Words to Know age, sex, weight (BMI), partly on whether you are a “plan-ahead- DNA or gene sequencing: a sample such as blood, saliva, genes, or other factors.
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