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Policy Consortium

Where Talk Leads to Action

What is Policy Consortium?

The Policy Consortium brings together a diverse group of advocates, experts and grassroots activists to discuss the most pressing issues of the day, along with Patient Advocate Foundation case managers and their patients.

Not just “inside the Beltway.” We bring people from around the country, from diverse backgrounds and socioeconomic circumstances, who have been directly impacted by the featured issue.

Anchored by data. We feature real, de-identified patient data from the Patient Advocate Foundation, highlighting lived patient experiences and trends over time.

More than just talk.  Past Policy Consortiums have led to direct action on issues as diverse as wellness coverage, transportation access and shared decision-making.

Policy Consortium Fall 2017

Securing the Safety Net for Patients and Families

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?

Alan Balch

What Challenges Have You Faced Working with the System?

Martha Herrera

Is Health Care a Social Justice Issue?

Edgar Rivera-Colon

View all 19 videos from the 2017 Policy Consortium


Annual Impact Report | Patient Advocate Foundation

An overview of the direct impact Patient Advocate Foundation has on thousands of patients each year, with a look at the circumstances that drive these patients and their families to seek assistance

Hardy Perennials and Hothouse Flowers: What Can We Learn from “Repeal and Replace?” | The Milbank Quarterly

The spectacular failure of the “repeal and replace” Obamacare sage that collapsed in July offers an opportunity to reflect.

Even the Insured Often Can’t Afford Their Medical Bills | The Atlantic

The debate over the future of healthcare is obscuring a more pedestrian reality: Insurance may handle most costs, but many Americans still need to turn to charity for help when they get sick

Protecting Medicaid | FamiliesUSA

Resources from FamiliesUSA on the importance of the Medicaid program



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