NPAF Fall Policy Consortium Focuses on Securing the Safety Net for Patients and Families
National Patient Advocate Foundation held its Fall Policy Consortium on November 8 in Washington, DC. The topic–Securing the Safety Net for Low Income Patients and Families–is timely, and critical to the PAF/NPAF mission of providing direct service patients facing serious and chronic illness, while advocating for accessible, high-quality, affordable health care for all.
The Policy Consortium brought together patients, caregivers, leading advocates and researchers from a spectrum of health care related areas. Edgar Rivera-Colon, a medical anthropologist who works with the Latino LGBT community and Ray Thomas, a HIV positive patient opened the day with a conversation about the importance of the social network in providing medical services as well as emotional support for patients with life-threatening and chronic illnesses. Ray talked about the importance of both public and private support services in helping him live with his illness.
“We need a safety net that integrates all the networks that patients access,” said Dr. Rivera-Colon. “One of the reasons we pay taxes is to contribute to a common good, to create structures that allow people to flourish.”
Sr. Simone Campbell addressed the issue of health care as social justice, making a strong case for her conviction that the safety net “is not charity. This is justice, so that we can all live in dignity. We need care that links people to necessary services in a seamless way. Health care is a basic human right.”
In this country, the cornerstone of the safety net for many people is Medicaid. Sara Rosenbaum of George Washington University, a leading expert on the topic warned that there a number of potential threats to this benefit. These include both proposed CMS changes that would impose work requirements on Medicaid beneficiaries as well as political efforts to reduce funding levels of a program which she said, “is a vital benefit for 75 million people.”
“Medicaid is too often framed as a benefit that some people deserve, and others do not. For most people, however, it is a benefit they get when then become ill or disabled and need help.”
Alan Balch, PAF/NPAF CEO followed with the results of a recent PAF survey that emphasizes the interconnected nature of health care. He noted that people worry not just about insurance coverage or drug costs, but also about basics such as transportation, childcare and the ability to buy food.
“This isn’t just about not letting people die,” he said. “Health care is a basic ingredient to self-actualization.
Kira Bona of Boston Children’s Hospital presented compelling data on the impact of poverty on outcomes for children treated for leukemia and other blood cancers at one of the nation’s leading pediatric treatment centers. She noted that pediatric oncology is a model for delivering high quality care and that the majority of patients are treated in specialty centers on clinical trials--but that children at or below the poverty level still have high rates of relapse and lower cure rates. The reasons for this are the subject of her research but may include issues from lower compliance rates with drug regimens to the effects of poor nutrition and high levels of stress.
Two panels, one addressing the value of the public safety net and the other the role of private and charitable safety net programs brought depth and breadth to the Policy Consortium. The panels included patients and the mother of a child with a serious disability, who shared their stories of struggling to access the safety net. They engaged in a discussion that ranged from the philosophical to data-based hard reality to personal experience.
At the end of the day, Alan Balch summed it up, saying, “We are all part of the community, the village that needs to work together to create, secure and protect this safety for the vulnerable people in our society.”.
What is the Safety Net?
What Challenges Have You Faced Working with the System?
Is Health Care a Social Justice Issue?
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