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.
Guest post by Dr. Susan Love
The Dr. Susan Love Research Foundation launched the Collateral Damage from Breast Cancer Treatment project in October to kick off Breast Cancer Awareness month and we have been very excited by your response to our call for topics and questions to help us document the “cost of the cure” to our lives. The goal of the project is to ask breast cancer survivors about the collateral damage they experienced from their breast cancer treatments and to compare their experiences to those without a history of breast cancer so we can better document the side effects attributable to various treatments. Many of the collateral damage issues you reported were not unexpected, such as lymphedema, depression/anxiety, fatigue, memory problems/chemobrain, and sexual problems. Other side effects that are less recognized include issues with toenails and fingernails as well as dripping noses in those taking Herceptin. We are eagerly working our way through all your responses to find these previously unreported findings.
Of particular interest was the fact that many of you were not told, or at least did not remember being told, about many of the side effects that are already well recognized. For example, you will always be numb after a mastectomy and will never get the feeling back. This has to do with the way the operation is done– cutting all the sensory nerves. Other long term consequences such as neuropathy, pins and needles, and sensory problems from the chemotherapy also don’t get better. Some of the sexual issues, such as loss of libido or dryness, can be caused by drugs like aromatase inhibitors (AI’s) which could resolve once you stop taking them, but if they are caused by menopause, they probably won’t resolve. While most of us would accept the consequences of treatment to save our lives, we really should know what to expect.
Edith A. Perez, M.D. received the Susan G. Komen Brinker Award for Scientific Distinction in Clinical Research for her impactful contributions to the field of breast cancer treatment, which have helped to shape the standard of care for breast cancer patients globally. Dr. Perez has devoted her career to improving breast cancer patient care and expanding the understanding of breast cancer biology. She has led a wide range of translational clinical trials testing new therapeutic agents for the treatment and prevention of breast cancer – trials that have had a lasting impact on women facing a breast cancer diagnosis. The award was presented on December 11 at the San Antonio Breast Cancer Symposium.
“Over the last few years, we’ve been concentrating more and more on what we call next-generation gene sequencing, which not only identifies different gene expressions (how information contained in genes is turned into genetic products such as proteins) in tumors, but also interrogates gene interactions that may impact tumor behavior.”
“As our research progresses, in addition to defining predictive models to better recommend prevention and therapy, we will identify new treatments that will optimize quality of life and survival for people around the world.”
Early in my life, I wanted to be part of something that was innovative, unique and great, but I didn’t know exactly what that would be. When I started college at age 16, I was going to study mathematics. By the second year in college I migrated from math to medicine, as I became enamored with science and the idea of helping people in a more tangible way than solving mathematical puzzles.