“Health care shouldn’t be just for a few.”
- Gwen Darien
For many people, a serious illness, an accident or the birth of a disabled child can bring with it life-changing financial burdens. The cost of care can force cutbacks to important or essential parts of people’s lives. It can mean making choices about whether to buy groceries or take prescribed medicine, juggling arcane eligibility requirements for safety net programs with efforts to hold a job or get an education. It can even mean complete financial ruin.
There are variety of financial assistance programs available to people facing financial toxicity resulting from health care issue, both public and private. At NPAF’s Spring Policy Consortium held on May 8 at the Newseum in Washington, DC, patients, advocates and experts came together to discuss the challenges facing individuals and the health care system in providing this assistance to people who need it.
“Does every medical advance create new inequalities for people who are not able to access this progress?”
- Mary Walton
Mary Walton, director of Patient and Family Centered Care at the Hospital of the University of Pennsylvania opened the discussion, providing a needed perspective on the ethical dilemmas clinicians confront on a daily basis as they make decisions about individual health care. To learn more, see the videos and blog below.
“Access to health care resources is still largely driven by income in this country.”
- Alan Balch
NPAF CEO Alan Balch presented critical data demonstrating the range and depth of financial issues that low income patients facing serious illnesses, even when they have insurance. “Individuals are paying a lot more out of pocket today, and these rising premiums, deductibles and cost sharing continue to increase. These challenges are made worse for many people by the threats to the safety net,” Dr. Balch said. See Dr. Balch’s video and accompanying data slides below for more information.
“The Medicaid program is the lifeblood of health and human services.”
- Mark Birdwhistell
Two panels took on the challenges and opportunities that both public and private source of patient assistance confront today. The first, Medicaid: Innovation and Challenges in an Evolving Landscape, included Sarita Battish, a patient and NPAF volunteer, Mark Birdwhistell, University of Kentucky of Healthcare, Diane Calmus of the National Rural Health Foundation, Matt Salo or the National Association of Medicaid Directors and Hemi Tewarson of National Governors Association for Best Practices Health Division. The group had an open, honest discussion of key issues including proposed work requirements and the general lack of understanding that many people have about what Medicaid does and how important it is to many Americans.
The second panel discussed the challenges to private patient assistance, including copay programs and the assistance that advocacy groups and pharma provide to patients unable to pay for their drugs or facing serious financial issues. The panel included Alan Wood, a facilitator from the Patient Advocate Foundation, Craig Cole, a medical oncologist at the University of Michigan, Tisha Felder or the University of South Carolina and Amy Killelea of Health Systems Integrations.
“Socio-economic status influences survival.”
- Craig Cole
In his keynote address, Dr. Cole provided a clear example of how the cost of care acts as a barrier to access for vulnerable populations. He talked about the remarkable progress being made in treating multiple myeloma, his specialty. New drugs have dramatically increased survival for these patients, but these treatments are expensive. Patients who cannot afford the drugs or do not have access to treatment centers where they are available are not reaping the benefits of this progress, and that impact is most clearly felt in African American and Hispanic populations. To learn more, watch Dr. Cole’s video comments using the link in the video section below.
NPAF’s next Policy Consortium will be held in Fall, 2018 with a date to be determined and focus on Cost of Care Issues for Vulnerable Populations.
Ethical Patient Care and Moral Distress
Mary Walton, MSN, MBE, RN. FAAN
Mary Walton discusses the ethical issues that clinicians confront when they “know the right thing to do for their patient but encounter an in institutional constraint that prevents you from doing that right thing,” a phenomenon that she described as “moral distress.” Walton stressed the need to for accuracy and clarity in making decisions. “Good ethics,” she said, “starts with good facts. We ask ourselves to whom do I have an obligation–my patients, my colleagues, my organization and those priorities can be competing, but we have to get our stories straight and integrate them into the real experience of a human person.”
The Financial Burden of Health Care
Alan Balch, PhD
Dr. Balch talks about the patient experience for low income people who have insurance. He noted that the trend to rising premiums, deductibles and cost sharing continues, increasing the financial burden on patients facing serious illnesses. He also noted that the financial burden is often not reflected in unpaid drug or medical costs. Many patients cut back on or give up important things in their lives in order to pay their medical bills.
The Face of Medicaid
Sarita Battish, DPM
Sarita Battish was a practicing podiatrist until an automobile accident left her struggling with a painful disability. Her condition left her unable to work full time and forced her to accept safety net programs including Medicaid and SNAP. She talks about the ways in which people misunderstand “the face of Medicaid,” and the importance of safety net programs to people who need them to survive and flourish.
How Unequal Access to New Therapies Affects Survival
Craig Cole, MD
Dr. Cole treats multiple myeloma at the University of Michigan. Just a few years ago, there were no disparities in treatment outcomes because there were no effective treatments. That has changed with the development of several new drugs that have dramatically improved survival for multiple myeloma patients. These new drugs are expensive and not available in every treatment center. The result--African American patients who often have more favorable types for the disease have worse survival. Dr. Cole talks about the reasons for this disparity.