Guest post by Komen’s Advocates in Science (AIS) member, Karen Durham.
After finding a suspicious lump in October 2008 and undergoing a series of tests and scans my diagnosis was confirmed in Feburary 2009 – I had metastatic breast cancer. After much discussion with my oncologist, she began searching for a clinical trial that I could participate in.
Within a month, I enrolled in a trial that compared the standard of care with the standard of care plus a drug that was approved for certain leukemias. Scientific evidence suggested this drug might be useful in solid tumors like mine.
As a member of Komen’s Advocates in Science (AIS) community, I had attended the San Antonio Breast Cancer Symposium in the past, and when I received the 2013 Program in the mail and saw that “my” clinical trial was going to be presented , I knew I would be attending again.
I don’t know if I can adequately describe the surreal feeling of sitting in a huge auditorium, packed with thousands of people, to hear the results of my own clinical trial. I was very fortunate to have several Komen AIS members, some Komen research staff, and a very dear friend sitting with me for support. I knew that my cancer had not grown in nearly 5 years, but did not know how the rest of the trial was progressing. I was both nervous and excited to learn more.
More than 3,500 Direct Energy Services employees demonstrated what it really means to get one step closer to a world without breast cancer when they participated in an employee program last October, walking and running more than 200,000 miles – all in the name of Susan G. Komen.
Employees wore pedometers throughout the month of October, logging the number of steps they took or miles they ran. For every mile, Direct Energy Services contributed $.50, and yesterday, Direct Energy Services Director of Retail Sales and Marketing Troy Latuff joined Komen President and CEO Dr. Judy Salerno, Komen Managing Director of Health and Program Education, Susan Brown, and breast cancer survivor Karen Murtha to show the impact every step can have in the fight against breast cancer, presenting Komen with a check for $100,000!
“I hope you know that with your donation today, you’re making it possible for Susan G. Komen to keep helping tens of thousands of people who turn to us for assistance during one of the toughest times in their lives,” said Dr. Salerno.
The funds will go to the Susan G. Komen National Treatment Assistance Fund which provides financial assistance for individuals undergoing breast cancer treatment. This Fund aims to reduce the financial and emotional stress that often comes with a breast cancer diagnosis, and helps pay for items such as medication, child care and medical equipment.
We’d like to give a big thank you to Direct Energy Services, its employees and everyone who helps make this important work possible!
Read more about the National Treatment Assistance Fund.
The following blog appeared in The Huffington Post on January 20, 2014.
Maria Shriver’s report this week on the economic crisis plaguing American women reinforces what those of us who work with vulnerable women see every day. By “vulnerable,” I mean women without insurance, without enough insurance, or without financial resources to access the health care system. Their plight is even more desperate when they are trying to access care because of a lump they’ve just discovered in their breast.
Shriver’s report is crucial to understanding a wide range of issues of vital importance to the women, families and future of this nation. To me, two lines in this report sum up key messages: “Access to affordable health care is essential to women’s economic security and well-being;” and “Leave out the women, and you don’t have a full and robust economy. Lead with the women, and you do.”
At Susan G. Komen, we work with low-income and uninsured women in thousands of communities across the country. Getting them the services they need has been a priority for our organization for all of our 32 years. And so it is enormously disheartening, in this day and age, to see women in our country at one of our free mammogram clinics with breast tumors that are likely to be advanced cancer – even some with tumors breaking through their skin. Had their cancers been detected earlier, they might have had more options or perhaps a better prognosis.
We don’t know all of the reasons why women delay seeking care, but we have good anecdotal insights. Fear and denial certainly play a role – some think that ignoring the problem may make it go away. As a practicing physician, I unfortunately saw that all too often.
But economics, especially among women, is likely the overriding issue. As Shriver’s report notes, a third of American women are living at or near poverty levels. Many are single working mothers. And women hold 62 percent of minimum-wage jobs, where taking a sick day could mean the end of the job. Those who don’t qualify for Medicaid, and who don’t have insurance, are told to bring the money for their procedures to the clinic ahead of time. The $200 that a mammogram might cost could pay for food for the family, forcing these moms to make tough choices. As a result, too many women delay seeking help.
Unfortunately, with cancer, the longer the wait, the fewer the options.
Jessica M. Winkler, Suffolk County, NY – Survivor
“I refer to cancer as an unwanted gift. Cancer changed who I am and altered my perception of life but all for the better!”
“This program, funded by Susan G. Komen Greater New York City, has helped many women like myself in Suffolk County, Long Island navigate through cancer surgeries and treatments with ease, through essential and in-demand services.”
Happy Birthday Jessica darling, you have cancer! I had planned to spend my 28th birthday celebrating with friends and family – instead, I was in the breast surgeon’s office receiving the diagnosis that would change every aspect of who I am, and which would alter my perception of life forever. The diagnosis? Invasive ductal carcinoma Stage 2B. And that wasn’t all. I also tested positively for the BRCA1 gene mutation, and my breast cancer was triple negative.
Saying I was in shock would be an understatement. I was nearing the end of my junior year of nursing school at Stony Brook University, doing exceptionally well. I was in the top five percent of my class, and I was exhausted. I had to really make an effort to follow through with my annual gynecological exam. During this exam the practitioner failed to do a thorough clinical breast assessment, which led me to conduct my own the following day. I was startled at the discovery of a pea-sized mass located on my right breast. What I didn’t know at the time was that I had just found my cancer. I made a follow-up appointment in which I was referred for further screening. Unaware of my family’s cancer history, I re-immersed myself in the nursing program and chose to put these follow-up breast screenings on hold. I waited until the semester was over. And then waited an additional month as I had begun working in a nursing internship program. Ironically, I was placed on a Surgical Oncology floor!
So why did I postpone these exams? Well, everything in my life was coming together. I had just moved into a new apartment. I had an incredible learning opportunity in front of me. I was ready for my final year of nursing school and I was 27 years old. I just didn’t have the time. Four months after the discovery of the mass, on my 28th birthday, I was informed that I had an aggressive form of breast cancer. This shattered me. I was propelled into a world where I had no clue what to expect. My life could potentially be taken from me, at the age of 28 and single? To make matters worse, I didn’t have health insurance that would cover my treatments.
I knew in my heart I was going to be just fine. I prayed. The following month I moved mountains and came across several “gems” who would help me during the most trying year of my life.
It’s amazing how extraordinary people and situations surface to come assist, guide and carry you through to the next phase of the process, whether they are aware of it or not. Arlene Allen, RN, Nursing Navigator at the Peconic Bay Medical Center, Riverhead, New York, was one of these special people. Arlene is employed in a program that provides concrete resources to those who are diagnosed with breast and ovarian cancer. This program, funded by Susan G. Komen Greater New York City, has helped many women like myself in Suffolk County, Long Island navigate through cancer surgeries and treatments with ease, through essential and in-demand services. I refer to Arlene as my guardian angel. She found medical insurance in a matter of days, which covered the entirety of my cancer treatments. At present I have a zero balance in cancer-related medical bills. Arlene was a central resource for rental assistance, education, and linking me to other young adults who shared similar diagnoses. Without these services I would not have been able to receive the cancer treatments I needed to survive.
The U.S. Department of Health and Human Services ruled today that certain breast cancer prevention drugs will be covered by health insurance plans under the Affordable Care Act. Read more.
This very important announcement means that patients at increased risk of breast cancer can now receive chemoprevention drugs, including tamoxifen and raloxifene, without a co-pay or other out-of-pocket expense. The decision comes after recommendations from the U.S. Preventive Services Task Force that patients deemed to be at increased risk of breast cancer (due to age, family history or other factors) can take such preventive medication to decrease the risk of developing the disease.
The HHS decision is a significant milestone in America’s health care system. The expanded coverage will empower patients across the country to make informed decisions based on their breast cancer risk without additional financial burden.
In addition to this new coverage, the Affordable Care Act currently requires insurers to cover mammography, with no cost-sharing, every one to two years for women starting at age 40. Medicare fully pays for mammograms once every 12 months with no upper age limit.
Komen has also consistently advocated for coverage for quality cancer care for all women. Breast cancer prevention has been a key focus of Komen’s research portfolio for many years, with almost $47 million invested into prevention research.