By Kim Beer, Director, Public Policy for Susan G. Komen
Earlier today, 65 Komen Affiliate leaders – many of them breast cancer survivors – from across the country met with their Senators and House Members to push for federal funding for cancer research and early detection through screening.
Breast cancer doesn’t care about the color of your skin or where you live. It doesn’t care if you’re young or old.
And it doesn’t care if you are from a blue state or red state.
More than 230,000 cases of breast cancer will be diagnosed in the U.S. this year. Each of those women and men, along with their families and friends, and the more than three million breast cancer survivors in the U.S. today, have concerns about access to care, getting the best treatment, and what the future holds.
For more than 30 years, Komen has worked to make sure their voices are heard, calling on lawmakers to make sure that all women have access to breast cancer services.
This week, we went to work again at the 2015 Komen Advocacy Summit. Representatives from our nationwide Network of Affiliates were joined by former Good Morning America host Joan Lunden and the talented Nikia Hammonds-Blakely who shared their own experiences facing breast cancer.
Local Komen leaders had the opportunity to meet with more than 350 Congressional offices to discuss how to better serve women in their communities and some of Komen’s key priorities this year:
- Ensuring Access to Breast Health Services through support of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) which provides breast cancer services to low-income, uninsured and underinsured women who do not qualify for Medicaid.
- Reducing Insurance Barriers to Treatment by ensuring that patients are able to take advantage of cancer drugs that can be taken orally (rather than via an IV) without incurring unfair costs.
- Participation in the Washington, D.C. Race for the Cure and raise funds for community programs in the National Capital Region, which has one of the highest incidence and mortality rates for breast cancer in the U.S.
We encourage each of you join us by becoming an advocate. Our voices combined can save lives and change the future.
The following blog appeared in The Huffington Post on April 13, 2015.
I once asked a simple question to a roomful of young residents I was training: “How many of you have advance medical directives?” Of course, all of them were in their 20s and in good health. No hands were raised and there was a good deal of laughter. I then asked a follow-up question: “How many of you can say with 100 percent certainty that you won’t get hit by a bus today?”
No one laughed as I went on to tell those young doctors that advance directives allow you to have options. You get to decide what you want in the event of an accident or catastrophic illness–and you spare your family the burden of making wrenching decisions, unaware of your desires.
Unfortunately, in my time as a practicing physician, I saw the pain and stress families endured when a person had a severe stroke, or was gravely injured in a car accident, and there were no advance directives concerning treatment preferences or who was to make medical decisions.
That’s why April 16 should be an important date on our calendars. It’s National Healthcare Decisions Day, or NHDD. It’s also the date following the day our taxes are due, for as Benjamin Franklin wrote, “In this world, nothing can be said to be certain except death and taxes.”
NHDD’s chair Nathan Kottkamp says this 50-state annual initiative aims to demystify health care decision-making and help people understand that it’s not just a matter of creating a living will–it’s a process that should start by having a conversation with family and friends, and choosing a person to carry out your wishes.
While it is an issue that should be considered by all adults, I think it’s especially important for anyone living with a chronic, potentially life-limiting disease, whether it’s breast cancer, Parkinson’s, renal failure or some other condition. Advance directive planning should really be regarded as part of the continuum of care. It is the only concrete way to make sure your wishes are respected if you are unable to speak for yourself.
My own family’s experience shows how vital this planning is. After my father’s first stroke, he and my mother put together an advance directive. Years later, my father had a massive stroke and my mother, of course, called 911. In the turmoil, the EMTs didn’t notice the living will on the refrigerator and before my mother could tell them about it, they had intubated my father’s trachea so he could breathe. But because my father had an advance directive and wished to be an organ donor, ultimately we were able to carry out his wishes, keeping him alive long enough to donate his liver, kidneys, and corneas.
As emotional as the entire experience was for my family, it underscored the importance of making one’s wishes known in advance. That’s why I have a power of attorney for health care, as well as a clear statement of what I want done if, for example, I lose the ability to communicate my wishes. My children know my preferences and now since they are now all young adults, my next job is to get them to think about their own advance directives.
If you haven’t thought about advance directives yet, I hope April 16 will spur you to do so. Please remember that once you make your decisions, they are not set in stone. Life circumstances change and your preferences can change as well. Indeed, that’s why a key document is called a “living will.”
So I urge you to set aside April 16 for a visit to the National Healthcare Decisions Day website at www.nhdd.org. There, under the Resources tab, you will find links to a wealth of information from AARP, the American Bar Association, and other respected organizations to help guide you in developing your own advance directives.
Every two years, Komen Northwest Louisiana travels across our ten parish (county) service area to conduct our Community Profile – the way that we assess how we can best serve our community. Earlier this year, we saw a tremendous need that was not being met: lack of both breast health education and awareness of free breast cancer screenings.
Working with three of our local grantees, the Komen Northwest Louisiana team set out to brainstorm a new way to provide better outreach, visibility and impact of local services throughout 2015. Through the collaboration and creativity of our grantees, the “Pop Up” concept was born, and four priority areas were identified: Ringgold, Mansfield, Springhill and Minden, Louisiana.
The idea was to “pop up” in a targeted priority community at a high visibility location, such as a grocery store or discount store, and provide a quick and convenient place to share breast cancer education, and offer clinical breast exams and mammograms.
The idea was simple in nature, but would not have been possible without the support of our grantees, including Partners in Wellness Mobile Mammography Unit (PIW), St. Luke’s Episcopal Mobile Medical Ministry and Martin Luther King Health Center. We also engaged local businesses to get the word out, enlisting the help of business staff to encourage customers, friends and family members who do not have health coverage and those who had questions about breast cancer awareness to stop by the Pop Up and take advantage of the services Komen funds locally.
Beginning with the first Pop Up in Ringgold, LA, held in the parking lot near a grocery store, we could see the impact of these events firsthand. It was so encouraging to walk into a dry cleaners or café and see faces light up as we spoke to the staff about what Komen Northwest Louisiana does, or how they (or their friends/family members!) can benefit from the services our community grantees provide.
Komen Northwest Louisiana Executive Director Lindsay Dean was equally excited, sharing, “These Pop Ups are a great way to not only showcase how fundraising directly benefits the local community, but it also helps people in these high priority areas put a face to the Komen Northwest Louisiana name.”
We knew that we were covering new ground with these Pop Up events, and our first Pop Up wasn’t without a few hiccups. But, we were able to apply what we learned to our second stop, in Mansfield, LA. Thanks to our refreshed approach and a beautiful sunny day, more than 30 women received free breast cancer screenings that day.
The effects of these events go beyond screening tests, too. In just two short months, our team has noticed a positive change in the public’s perception of breast cancer, with many individuals being more open to discussing their personal experiences with breast cancer.
Throughout 2015, we plan to schedule one Pop Up a month, rotating our stops in each of the four priority areas identified through our 2015 Community Profile. In doing so, we will visit each area three times throughout the year.
Our team has been so inspired what collaboration and creativity can do for a community. Thank you to each of the individuals involved in making these Pop Ups possible! We are pleased to have another opportunity to serve our neighbors throughout the year.
For more information about what’s going on in your area, click here to find your local Komen Affiliate and see how you can get involved!
In order to recognize something as “abnormal,” you first have to know what is normal. It’s like when you notice that you have a runny nose or a sore throat, and wonder if you’ve caught a cold.
We know cancer cells are abnormal because they don’t act like normal cells. They are invasive, they evade our immune system, and they spread (or metastasize). So, in order to target and stop breast cancer cells dead in their tracks, researchers first have to understand what exactly makes breast cancer cells different from normal breast cells. And to determine that, they need healthy, disease-free breast tissue.
The Susan G. Komen Tissue Bank at the IU Simon Cancer Center is the only known repository for healthy breast tissue in the world. We rely on tissue donations from generous women who want to make a very personal contribution to breast cancer research.
Each time a woman donates tissue, she is making it possible to create 20 or more individual samples (a collection of blood, serum, plasma and breast tissue) that can be used by researchers. This support is so vital because each year we receive requests from researchers around the world in need of these samples.
The quantity of samples needed can vary from as little as three to as many as 1,000. Additionally, studies often have specific needs, such as only tissue from African-American women or only blood from women who have recently entered menopause. And, just like other resources, it will run out if not replenished. We need help to ensure that these samples are available, and researchers have the tools they need.
Our neighbors here in Indiana have been nothing short of amazing supporters over the years, but, in order to reach a more diverse population (and get a wider array of samples), sometimes we take the Tissue Bank on the road. Most recently: to Houston, TX.
Hosting a remote tissue collection event is no easy task, so we were grateful to have the support of Komen Houston, Baylor College of Medicine and lots of local volunteers. We took over the Baylor facility for a day, and worked with community organizations to encourage women of Latina/Hispanic and Asian backgrounds to donate tissue. By the end of the day, samples were collected from more than 160 women.
I’m excited to share that we’ll be heading to Detroit in 2016 for another tissue collection event. I’m looking forward to meeting the dedicated women in that community as well.
Wise words tell us, “do something today that your future self will thank you for.” What about something that future generations will thank you for? It may have been just a tissue sample, but these women have made an impact for years to come.
Any donation – whether it’s money, tissue or time – brings us one step closer to a world without breast cancer. A special thanks to each of you for being a part of this important work.
If you have questions about the Komen Tissue Bank, the tissue collection process or anything else, check out our website for more information. You can also take a look at all of the studies that have used donated tissue samples to make progress against this disease.
The following blog appeared in The Huffington Post on March 26, 2015.
We are standing at an extraordinary moment. For nearly 4,000 years of recorded history, cancer in all its forms was an implacable foe. Doctors, patients, and researchers won incremental victories, but for millennia, the word “cancer” was too dreadful to speak aloud. Now each day brings remarkable progress in unlocking, and defeating, the code of cancerous cells.
That rapid advancements have been made against cancer in a tiny sliver of time is made clear in a landmark documentary by Ken Burns and Barak Goodman, Cancer: The Emperor of All Maladies.
Based on the Pulitzer Prize-winning book by oncologist Dr. Siddhartha Mukherjee, the film, which airs on PBS on three consecutive nights starting March 30, charts the past, present, and future of cancer from 2500 BC to the genomics and precision medicine that are revolutionizing detection and treatment in 2015.
It’s “must viewing”–after all, one in three Americans is touched by cancer– and everyone involved in bringing this film to PBS has earned the gratitude of Susan G. Komen. That includes a number of our allies in the effort against cancer, such as Stand Up To Cancer, the American Association for Cancer Research, and the American Cancer Society.
But while it’s vital viewing, it’s not always easy viewing. Dr. Vincent DaVita, formerly of the National Cancer Institute, recounts that, “When I was growing up, I had an aunt who developed cancer and she was hidden away in the attic. People were ashamed when they had it.” Dr. Jimmie Holland of Memorial Sloan Kettering Hospital recalls what instructors said to her in medical school in the early 1950s: “We were told you don’t tell patients they have cancer, because it would be cruel to do so.” In other words, don’t deliver a death sentence.
Of course, cancer wasn’t always fatal in the mid-20th Century, but successful treatments were often horrific and disfiguring. Susan G. Komen’s founder Nancy Brinker has spoken movingly of visiting her Aunt Rose decades ago following a Halsted mastectomy for breast cancer. The teenaged Nancy and her sister Susan accidentally caught a glimpse of the hollowed out and “startling remnant” of her aunt’s chest. It was concave and burned bluish purple by high-voltage cobalt treatments.
Neither sister ever forgot that sight, but with the prevailing mores about cancer–and breast cancer in particular–they kept this intensely personal experience to themselves. With the passing years, public attitudes changed and cancer moved out of the shadows.
So when Susan Komen died of breast cancer in 1980, her sister Nancy launched our organization. In the decades since, progress against breast cancer–and cancer in all its forms–has been dramatic. As Dr. Mukherjee notes in the film, “We are finally beginning to understand what causes cancer at a cellular, molecular, or genetic level in a way we didn’t understand 10 years ago, or even five years ago.”
Today, knowledge about a specific genetic mutation allows some women to take steps to actually prevent breast cancer from developing. And if it does, there are treatment options that were unimaginable in 1980. Those options are the result of years of research into new therapies, biomarkers, environmental causes, and more. We are proud of the role Susan G. Komen has played in these advances through research funding.
But a cloud hangs over our advances. While survival rates for many forms of cancer–and including breast cancer–are up, federal funding for research has remained relatively flat for the past 10 years, resulting in real-dollar funding cuts of 20 to 25 percent. To achieve even greater progress, we as a nation must commit to funding the work of the best minds in cancer research. At Susan G. Komen, more than half of our 2015 research portfolio will go to early career scientists who might otherwise be forced from the profession for lack of funding.
We must provide the funding to keep the next generation of researchers in the field, because cancer, in all its forms, never sleeps. As Dr. Mukherjee has said, “Down to their innate molecular core, cancer cells are hyperactive, survival-endowed, scrappy, fecund, inventive copies of ourselves.”
If we are ever to dethrone “the emperor of all maladies” we must be more hyperactive and inventive than cancer itself.