There's more to treating cancer than eliminating the disease itself. The Cancer Support Community, a nonprofit committed to ensuring "whole patient" care, stands by this idea, providing social and emotional support to all those affected by the disease. On Thursday, the organization launched its Cancer Policy Institute as a step toward ensuring that everyone can have access to affordable and comprehensive cancer treatment.
"At a time when there are multiple viewpoints about how to approach health care, and [the country] stands on the cusp of implementing large structural changes to the health care system, we are here because we want the best possible outcomes for people with cancer and their families," said Kim Thiboldeaux, president and CEO of the Cancer Support Community.
The Wellness Community and Gilda's Club Worldwide joined forces in 2009 to create CSC, and the organization's mission is now "to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community." In 2012, CSC provided more than $40 million in services, such as support groups, educational workshops, exercise programs and social activities, to patients and their families.
In 2008, the Institute of Medicine released a report linking positive social and emotional support to better patient outcomes throughout a cancer treatment process. Modern cancer care offers many state-of-the-art treatments, but those procedures frequently fail to address the psychological and psychosocial issues often associated with the illness, according to the study.
Given treatments, expenses, lifestyle changes and the fear of the unknown, it is not uncommon for people battling cancer to become overwhelmed. Rep. Debbie Wasserman Schultz, D-Fla., and a breast cancer survivor, knows those feelings firsthand. "My experience taught me about the importance of treating the whole person, not just the illness," Wasserman said on Thursday. "Cancer is not just frightening for those going through treatment. We need a safe and strong place to all come together."
After undergoing seven surgeries, Wasserman is proud to say she is cancer-free and continues to push for comprehensive care. "More and more young people are getting cancer, and metastatic rates are not going down," she said. "We've made progress, but there is certainly a long way to go."
By the numbers
Ezekiel Emanuel, the keynote speaker at the Cancer Policy Institute launch, said $2.87 trillion was spent on health care in the United States, including $979 billion in federal spending, in 2012. To put this in perspective, if you compare that number to overall gross domestic products of other countries, the U.S. health care system is the fifth-largest economy in the world, he said.
So where does all this money go? "When you think about the health care system, you have to understand that health care costs and quality of care is not uniformly distributed across the population," said Emanuel, who is also the vice provost for Global Initiatives and chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania. Approximately 50 percent of the population doesn't participate in the health care system, he explained. This portion is made up of younger, healthy individuals. People who periodically receive medical assistance, such as those with allergies or who are more prone to colds and the flu, make up another 40 percent of the population. The remaining 10 percent, which includes cancer patients, is the portion of the population that utilizes the most health care dollars.
"If [we] want to improve the system, we will have to focus on those patients because those are the ones who are high-cost and where there are quality problems," Emanuel said.
The cost of cancer treatment has risen approximately 600 percent over the past 30 years, according to Emanuel. From the patient-centric perspective of CSC and the Cancer Policy Institute, more comprehensive health coverage could benefit cancer patients several ways, including financially. When patients are more aware of their health care options, they can choose more cost-effective treatments, share decision-making processes with their doctors and have a better overall treatment experience, Emanuel said.
"We need to figure out how to change how we are delivering care," Emanuel said. "No person should go through cancer alone, and no person should go through an uncoordinated, disjointed system where they are suffering from cancer, have to do all the running around and do all the navigation themselves."
CSC's public policy efforts will continue "so that no one faces cancer alone," according to Institute supporters. "It's absolutely needed, and it's something that our patients and volunteers very much want," said Dick Woodruff, vice president of federal relations and strategic alliances for the American Cancer Society Cancer Action Network. "ACS CAN currently has two bills pending in the House specifically related to improving patient quality of life through the provision of wider access to palliative care, throughout all health care settings, so it's not only something we fully support, but it's something we are actively working on as well."
Last week alone, CSC affiliates had more than 50 scheduled meetings with Capitol Hill representatives regarding health care policy changes stemming from the launch of the Cancer Policy Institute. "There is a lot yet to do to make change and improve cancer care in America, and we are fully committed to putting all our resources, energy and passion behind it," Thiboldeaux said. "We are very excited to move forward with these issues."