By Sandy Finestone and Karen Durham AIS Steering Committee Members and Komen Scholars
Many patients are willing to put up with a lot if it means a longer-term future. Going through short term nausea and fatigue is an easy sacrifice. Still others are even willing to cope with more severe, lasting side effects – such as heart and nerve damage – if it means more time. For some, however, the promise of even a bit more time – say, two more months – is simply not worth trading in their quality of life.
The patient perspective hasn’t always been top of mind for researchers and drug makers, but more and more, patient advocates like Komen’s Advocates in Science are getting involved in the research process, making sure that patients have a voice.
We had the chance to share our own experiences at a recent meeting on breast cancer drug development hosted by the U.S. Food and Drug Administration (FDA). We were two of the four survivors on the patient-side of the panel (photo), each selected to share our own unique point of view. Kimberly Wright, a fellow AIS Steering Committee member, also attended to offer her support.
This meeting was one of 20 on patient-focused drug development that the FDA has planned. The goal of this meeting was to understand the impact of breast cancer and treatment on our daily life. Additionally, they wanted to hear our thoughts on treatments now available.
We were very anxious, and a little excited, as we drove to the FDA campus for the meeting. After a few wrong turns and much laughter, we made our way to a large meeting room with a podium and two tables on each side – one for the FDA staff and one for the patient presenters.
All of us on the patient-panel had powerful stories to share. Karen spoke as a woman living with metastatic breast cancer. While Sandy spoke not only as a survivor, but also shared her experience of leading support groups for women facing breast cancer.
A third woman spoke about dealing with the psychological impact of her diagnosis. A fourth woman shared how, at the time, she put her breast cancer diagnosis on hold while dealing with more urgent issues in her life until her cancer returned. And now, breast cancer and her treatment are impacting every aspect of her life.
After we had a chance to speak, the FDA panel members asked a lot of detailed questions, such as: If you completed treatment more than six months ago, have your side effects disappeared? Would someone opt out of a treatment because it could cause hair loss? Exactly how does peripheral neuropathy (nerve damage) affect your daily life?
The key message we gave to the FDA panel was clear: patients are willing to bear treatment side effects as long as they are informed about how the treatment may affect them and there is a clear benefit to their survival.
We all felt it was a very productive, satisfying meeting. It was obvious to us that the FDA wanted to hear the patient perspective about treatment, side effects and the willingness to endure those side effects. In fact, some FDA panel members approached Karen during the break and after the meeting to ask her more questions. Another FDA audience member asked Sandy if she would come and speak to his colleagues at another division of the FDA.
All in all, it was a very good meeting, and we are hopeful it will be just the first of many such conversations with the FDA and the advocacy community.
By Susan G. Komen Scientific Grants Managers, Jerome Jourquin, Ph.D. and Jamie Stanford, Ph.D.
Sharing one’s work with the public isn’t always easy for scientists. They can get wrapped up in explaining intricate details about the biology or the thought process behind their research. What gets lost sometimes is the why – Why is this work important? Why will it benefit patients?
Susan G. Komen-funded researcher Dr. Deborah Lannigan, Associate Professor at Vanderbilt University Medical Center (VUMC), is passionate not only about her work, but also making sure the work is understood. She, like many of our Komen-funded researchers, wants the public to know more about the research they support.
Her desire to reach the public led Dr. Lannigan to open her laboratory to visits by breast cancer patient advocates. The Komen Greater Nashville Affiliate and a group of its supporters were among the first visitors who were able to get a firsthand look at ongoing Komen-funded breast cancer research.
As they toured the lab, Dr. Lannigan discussed a new technology that she is using to find genes that cause triple negative breast cancer (TNBC) – one of the most aggressive forms of the disease. She and her team will use this information to develop specific targeted therapies, which are currently unavailable for TNBC.
Dr. Lannigan and her graduate students also took time to show their visitors how they grow human breast tissue in the lab, explaining the many pieces of equipment they use to conduct their daily work. The tissue they grow is used to identify and test new drugs, even combinations of drugs, prior to testing in people. She explained that her studies could help doctors find the best treatment for each individual patient – known as “precision medicine” – which could improve the chance of survival.
“What resonated with me was that the money we raise here locally in Nashville [is]
being invested in high level research, like at Vanderbilt, right down the road”, one lab visitor noted. “After seeing the cutting-edge cancer research firsthand in the laboratory, I was able to see how the Susan G. Komen dollars are helping fund research with the goal of ending breast cancer.”
Komen is proud to support Dr. Lannigan’s ongoing research, which is being done in collaboration with Dr. Ian Macara, Professor and Chair of Cell and Developmental Biology at VUMC.
Fortunately, this won’t be the first and last time the public will visit Dr. Lannigan’s Vanderbilt lab. The success from this visit inspired more to come.
-In addition to Drs. Macara and Lannigan’s funding, Komen has invested more than $80 million towards finding better ways to treat TNBC. Learn more about Komen’s research investment in TNBC.
One of the most important elements of the Susan G. Komen mission is funding breast cancer research, and today, we’re excited to share an important breakthrough made possible in part by more than $1 million in Komen funding.
A study published today in Nature Genetics, marks the discovery of a new breast cancer susceptibility gene called RECQL. Led by Dr. Mohammad Akbari (University of Toronto) and Cezary Cybulski (Pomeranian University, Szczecin, Poland), this work featured an important contribution from Komen Scholar Dr. William Foulkes of McGill University (Montreal, Quebec) who has received long-term support from Komen, and a $1.125 million grant in 2010 for this work. Working with Quebec colleagues based at McGill and at the University of Laval, Foulkes was able to provided convincing data to support the candidacy of RECQL as a new breast cancer susceptibility gene.
The research is groundbreaking, because breast cancer susceptibility genes and their associated mutations are difficult to identify. In fact, all of the mutations in breast cancer susceptibility genes that we currently know of (including BRCA1 and BRCA2) account for just half of all inherited breast cancer cases.
But Dr. Foulkes’ work lays the foundation for more discoveries that may one day help women assess their risk and take action for their health. We learned this from Dr. Mary-Claire King’s identification of the location of the BRCA1 gene in 1990. Researchers knew then that BRCA1 would be an important gene, but it took several years before it could be determined with certainty that BRCA1 mutation carriers have a 55 to 65 percent chance of developing breast cancer by age 70 (much higher than women at average risk). Or, that women who have a BRCA1 gene mutation are at a higher risk of developing triple negative breast cancer – an aggressive and potentially lethal form of the disease.
Subsequently, in work also funded by Komen, another important breast cancer gene, PALB2, was found to lead to a 35 percent risk for breast cancer by age 70, showing that these initial discoveries do lead to the acquisition of clinically meaningful data.
This knowledge led to tests for BRCA and PALB2 gene mutations that have helped women and men with the mutation make decisions about their own health, based on their individual risk. The same potential exists for the RECQL mutation if and when testing for the mutation is available.
While we know there is still a lot to learn about both the RECQL gene mutations and breast cancer in general, we’re eager and excited to see what the future holds.
And we are even more inspired to keep funding research that will end this disease. We fund along the entire cancer spectrum – from causes to cures – to reduce mortality and incidence of breast cancer.
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.