Cancer survivors were recognized recently during the first annual Divas and Dons “Breast Cancer Awareness Libra Bash! held at Gene’s Lanes and Lounge 6315 W. Fond du Lac Ave. The event was sponsored by C.H.I.L.L and D.A.M.G. organizations as part of the national recognition of breast cancer survivors. (Photo by Yvonne Kemp)
From Natural Disasters to Layoffs, Today’s World is Full of Tortured Survivors, Physician Says
There wasn’t a name for the syndrome before the 1960s, when psychologists started recognizing a condition among patients who all happened to be Holocaust survivors. It came to be known as “survivor guilt.”
The affliction also affects those who have endured war, natural disasters, the suicide of a loved one, epidemics and even employment layoffs. Eli Nussbaum, recently named among the top pediatric pulmonologists, is keenly aware of the circumstances surrounding this subset of post-traumatic stress disorder.
“I am a consequence of the Holocaust – both of my parents lost their families during those years,” says Nussbaum, author of The Promise (www.elinussbaum.com), a novel that begins in Poland on the eve of World War II and follows three generations through the aftermath.
He is among the group known as the “Second Generation” – children born to survivors anxiously trying to rebuild the families they’d lost. Nussbaum was born in Poland to a man who’d lost his first wife and four children, and a woman who lost her first husband and child, during the Nazi’s genocidal regime.
“Because of my family background, I am intimately aware of life’s fragility and how a devastating experience can affect a person emotionally,” he says. “As a Second Generation, I too was shaped by my parents’ trauma. While being raised by survivors made some of us more resilient and better able to adapt and cope, it made others distrustful of outsiders and always on the defense.”
For anyone profoundly affected by loss, he says, it’s worth the effort to work at transitioning from guilt to appreciation of the gift that is their life. He offers these tips:
• Seek treatment early: The sooner counseling is provided, the more preventable or manageable guilt may be. Early methods may recognize a survivor’s feelings and eventually offer alternative perspectives. The hope is to get the survivor to see the loss of colleagues, friends or family as the result of misfortune that has nothing to do with personal culpability.
• Watch for delayed reactions – even years later: No two individuals are identical, and some survivors do not show symptoms until long after a traumatic event. If you or a loved one has experienced a life-altering change or loss and later develop problems such as clinical depression or a prevalent sense of self-blame, be aware they may be rooted in past trauma and share that information with a counselor. Other problems that could be signs of survivor guilt: nightmares, unpredictable emotional response and anxiety.
• Don’t turn to drugs or alcohol to cope with uncomfortable feelings: Many people suffering post-traumatic stress-related disorders try to self-medicate or somehow will themselves into a better mental state. Drug addiction is often the result, which is why those who suspect a problem should seek professional help. One-on-one therapy, as well as group talk and possibly doctor-prescribed medications are frequently used to help survivors move past guilt.
“Whether people are dealing with the loss of life from combat, or an accident, or suicide, they may not consider themselves ‘victims.’ So they don’t seek help,” Nussbaum says. “They may also feel that no one has been through the same experience.
“That’s why it is important to be surrounded by loved ones who can offer love, support and perhaps the perspective to seek professional help.”
Because their families were gone, many Holocaust survivors did not have that option, which Nussbaum says made the writing of his novel that much more imperative.
“Only they can know just what it was like – but suffering is a universal experience to which we can all relate,” he says. “Life can get better, and the story of my parents, and the fortune in my life, is proof of that.”
Cancer Research Funding, Health Care Top Priorities
Madison–Dozens of cancer patients, survivors and their families gathered on the steps of the state capitol, Wednesday, for the official kickoff to their Cancer Votes campaign. The campaign is part of the American Cancer Society Cancer Action Network’s (ACS CAN) efforts to put cancer issues front and center this election season. Those issues include cancer research funding and access to quality health care.
“Most people don’t recognize the tremendous impact their elected officials have on the fight against cancer, “said Kathi Hansen, a Cancer Votes volunteer and long-time breast cancer survivor from Green Bay. “Many important decisions from diagnosis to end of life care are made not just in the doctor’s office, but also in Congress.”
Each day 87 people in Wisconsin are diagnosed with cancer. In order to fully illustrate the magnitude of that number, volunteers at the kickoff stood amidst 87 life-size silhouettes of men women and children and wore t-shirts emblazoned with the number 87.
“All of these silhouettes are reminders that today someone’s mom or dad, sister or brother, grandparent or other loved one will be diagnosed. What’s more, the 1 of 87 today could be you,” said Hansen.
The federal government is the largest source of cancer research funding. Yet when adjusted for inflation, federal funding for such research has actually declined nearly 20 percent over the last decade. Meanwhile, cancer incidence is projected to double in less than ten years.
“What if your life-saving treatment is left sitting in a lab because of a short-sighted funding cut? Or what if your treatment is already out there but you can’t afford it because you’re uninsured? These are important issues candidates and the public should be thinking about,” said Hansen.
In hopes of raising awareness, Cancer Votes volunteers will take their message, their questions and their t-shirts on the road at candidate forums, fairs, community events, call-in radio shows and through a new website, www.cancervotes.org.
They also asked candidates to participate in their “Candidate Cancer Challenge,” which includes:
Meeting with cancer votes volunteers to discuss cancer issues
Sharing their 1 in 87 cancer story
Completing the Cancer Votes voter guide
Scheduling a time to meet with cancer researchers and learn first-hand the importance of cancer research to the people and economy of Wisconsin
“Considering almost half of all Americans will be diagnosed with cancer in their lifetime, this is a ‘special interest group’ in which almost everyone is a member. We need people to speak up, get involved and be heard,” said Hansen.
Volunteers are also circulating an online petition aimed at showing the candidates that people care about cancer in this election. Volunteers are hoping to collect 2,012 signatures within the first 87 hours and many more beyond that.
More information about the Wisconsin Cancer Votes campaign and the issues can be found at www.cancervotes.org.
Cancer Votes is a non-partisan electoral program and will not oppose or support any candidate.
31,920 people will be diagnosed with cancer in Wisconsin in 2012
11,240 people will die of cancer in 2012
CANCER RESEARCH FACTS:
For years the National Institutes of Health (NIH) has been underfunded or cut, not keeping pace with the cost of medical inflation. This has resulted in in an inflation-adjusted funding decline of 20 percent in the last 10 years.
The NIH is slated for an 8 percent reduction as part of the budget deal worked out last summer by Congress
This kind of reduction puts future progress and current research at risk
Wisconsin received more than $389 million from the NIH in 2010, including $51 million from the National Cancer Institute in support of medical research across the state
HEALTH INSURANCE FACTS:
Scientific research has shown a cancer patient’s insurance status impacts their chances for survival
1 in 4 non-elderly people in Wisconsin spend more than 10 percent of their income on health care costs, threatening their financial well-being. This number has increased 57 percent between 2000 and 2008
Almost half of uninsured women in Wisconsin between age 40 and 64 did not have a mammogram in the past two years compared to 1 in 4 of those with insurance.
Nationwide 1 in 5 cancer patients with insurance report using all or most of their live savings fighting the disease
by Earnestine Willis, MD, MPH and Clarene Mitchell
Medical College of Wisconsin, Health Equity and Urban Clinical Care Partnerships
Cancer is the second leading cause of death for Americans. However, glaring disparities exist within communities of color. The mere thought of cancer makes one shudder with fear. For this cause, nearly 800 cancer survivors, community health advocates, medical clinicians, academics, and students gathered in Houston, Texas for the 25th Biennial Symposium on Minorities, The Medically Underserved & Health Equity. The six-day event included a robust agenda centered on the theme, “Empowering Communities in the Era of Health Care Reform”. The event was organized by the Intercultural Cancer Council (ICC) and sponsored by the University of Houston, The University of Texas MD Anderson Cancer Center and others.
ICC promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the United States, including Native America and Alaska Native Tribal Nations and Organizations and US flag territories and freely-associated states. The first symposium was held in Houston in 1987, at which time they launched National Minority Cancer Awareness Week. The ICC Symposiums were created by Lovell A. Jones, PhD. Jones founded the ICC along with Armin D. Weinberg, PhD.
Against the backdrop of the sweltering summer heat in the 4th largest city in the U.S., the attendees were engaged in sessions that covered a broad range of topics including; “Charting New Initiatives in Heath Disparities”, “Chronic Disease Prevention and Control”, “Capacity Building Workshops”, and “Health Disparities and the Media.” Each day began with “Exercise Your Way to Good Health” at 6:00 am, giving participants an opportunity to take care of their physical beings as they worked to improve the health of others.
According to the American Cancer Society’s Cancer Facts & Figures 2012 report, “African Americans are more likely to develop and die from cancer than any other racial or ethnic group.” The report also states “Disparities in the cancer burden among racial and ethnic minorities largely reflect obstacles to receiving health care services related to cancer prevention, early detection, and high-quality treatment, with poverty as the overriding factor.
Noted national speakers at the event included eminent national Black health leaders William (Bill) C. Jenkins, MPH, PhD, Disease Transmission Specialist; Harold P. Freeman, MD, President and Founder of the Ralph Lauren Center for Cancer Care and Prevention and Senior Advisor to the Director of the National Cancer Institute; David Satcher, MD, PhD, the 16th Surgeon General of the United States; Rick Kittles, PhD, Associate Professor, University of Illinois at Chicago. Dr. Jenkins, formerly of the U.S. Centers for Disease Control and Prevention (CDC), is credited for exposing the injustice of the Tuskegee syphilis experiments during his early years as a public health officer. His efforts helped to put an end to the 40 year study that continues to be a dark cloud hanging over the Black community and research institutions. As noted by President Clinton in 1997 when he provided an apology to the eight remaining survivors, “The United States government did something that was wrong-deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens…clearly racist.” Jenkins’ commitment to the Tuskegee victims continued after the experiments were closed down through his advocating for the survivors when he managed the Participant Health Benefits Program which assured medical services to the survivors.
During his presentation, “The Evolution of Science and Service in Health Equity”, Dr. Jenkins spoke on the importance of history being known and connected to what we are experiencing today. “Communities of color need to understand their cultural contributions to health developments”, he stated. He reminded everyone of W.E.B. Du Bois establishing the framework for what we know today as social determinates of health in his 1899 classic book, The Philadelphia Negro. In reference to moving toward health equity, Dr. Jenkins stated, “There is a pressing need to fund community-based organizations to impact health disparities.” He echoed what was stated throughout the conference: The solutions to addressing health disparities are within the communities that are experiencing the problems. These problems continue because the communities are not empowered with necessary resources. Too much of the focus is on the development of corporate leaders instead of community (servant) leaders. “We have to understand and respect the competency of community people”, furthered Dr. Jenkins. Although the symposium featured national cancer experts, it was noted that communities of color often experience multiple chronic conditions, so effective approaches must include strategies to address more than just cancer.
Beyond the sharing of best practices to advance health equity, the Symposium included moments of celebration as well. There was spontaneous celebration when the announcement was made that the U.S. Supreme Court upheld the Affordable Care Act. The crowd erupted in thunderous applause. It was very fitting that the Symposium focused on “Empowering Communities in the Era of Health Care Reform” and this very critical decision was made during the timeframe of this symposium. Speakers throughout the duration of the symposium modified their presentations to align with the significance of this landmark decision.
The planned celebrations included Dr. Satcher, who is the Director the Satcher Health Leadership Institute and Center for Excellence on Health Disparities Poussaint-Satcher-Cosby Chair in Mental Health, Morehouse School of Medicine, receiving the Herbert W. Nickens Memorial Award. Honoring the spirit and legacy of Dorothy I. Height, many beautiful hats were worn during the Height and Hope Awards Celebration. Dr. Height was a long supporter and attendee of the ICC Biennial Symposium. This year’s Dorothy I. Height Honoree was Marilyn Hughes Gaston, MD. After being frustrated that she had not readily diagnosed a baby that had a badly swollen hand during her internship at Philadelphia General Hospital in 1964, Dr. Gaston immersed herself in the study of sickle cell disease (SCD). In 1986 Dr. Gaston published the results of a groundbreaking national study that proved the effectiveness of giving SCD children long-term penicillin treatment to prevent septic infections. Her study showed that babies should be screened for SCD at birth, so that preventive penicillin could be given right away. The study resulted in Congressional legislation to encourage and fund SCD screening programs nationwide. Within one year, forty states had begun screening programs. One of the most important conclusions of her work was the ease with which the complications of Sickle Cell Disease could be avoided with early treatment, a life-saving practice that became a central policy of the U.S. Public Health Service.
Texas Congresswoman Shelia Jackson Lee provided an energizing talk during the closing session on that Sunday morning. This symposium had a family reunion mood to it. There was a great sense of affinity among the attendees. Diversity was celebrated, truthful conversations were had and authentic relationships were developed. The intensive six days seemingly ended too soon, many of the attendees were already looking forward to the next biennial event. Longtime ICC symposium Sandra Millon-Underwood, PhD, RN, FAAN, summarized her thoughts on this year’s events, “Most significant to me was the reminder by Dr. Satcher that the work that we all do should be likened to a ‘relay’ and not ‘a race’”. Dr. Underwood is with the University of Wisconsin-Milwaukee, she serves as an American Cancer Society Professor and Northwestern Mutual Life Research Scholar. She continued, “And the caution is to always be mindful that even when it seems that the ‘relay’ is over it is important to keep pushing forward.”