We advocate for what patients want. We teach patients to advocate for themselves. We support patients through encouraging community.
How do we do this important work?
First, we listen. We listen to the voices of patients and caregivers who have been directly served by our sister organization, the Patient Advocate Foundation, and we listen to those who have shared their stories with us via our online portal or at one of our many skill-building events.
Next, we help. We work with individuals to build skills that work at home, the doctor’s office or in a legislative office. We work directly with patients, providers, caregivers and their advocates to promote:
- Shared-decision making skills between patients and providers
- Medical billing literacy
- Health equity
- Awareness of patient rights
Then, we collect and compile data on the patient experience at hospitals and doctor’s offices, and regularly publish reports on this quantitative and qualitative data.
Finally, we amplify the patient’s voice by connecting patients with the media and helping interested volunteers work in legislative, research or community advocacy.
Patient Advocates Demand Program Integrity for Marketplace Purchases in Defiance of Proposed Rule
November 25,, 2020 - A last minute maneuver by the Trump Administration could eliminate healthcare.gov and increase bureaucratic barriers for those wishing to purchase individual plans, according the National Patient Advocate Foundation, a national non-profit organization devoted to advancing access to affordable, equitable and quality health care.
“When the Administration talks about ‘protecting the risk pool,’” said Rebecca Kirch, “we worry they just mean stopping people who need coverage from enrolling. If we aspire to improve the individual experience, improve population health and reduce costs, these proposed rules fail on all counts.”
Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ and Limited English Proficiency Patients
December 9, 2020 - More than a dozen patient groups representing millions of Americans with serious and chronic health conditions are urging the U.S. District Court for the Southern District of New York to preserve protections in the Affordable Care Act for lesbian, gay, bisexual, transgender and queer patients receiving health care services and restore translation notices for those with limited English proficiency in the case of New York v. U.S. Dept. of Health and Human Services.
Patient Groups Urge U.S. Supreme Court to Prioritize Patients and Uphold Health Care Law
November 9, 2020 - Twenty patient groups representing millions of Americans with pre-existing conditions are urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas. The groups cite the devastating impact patients would face should the court rule to invalidate the Affordable Care Act.
The patient groups, which filed an amicus brief in May, argue the law has expanded access to health insurance coverage and has improved patient outcomes as Congress intended. Congress’ decision to keep the ACA in place after zeroing out the tax penalty tied to the individual mandate reinforces that intent
"NPAF is here to ensure that the patient perspective is heard and that it matters.”
— Alan Balch, PhD, Chief Executive Officer
For media inquiries, including requests for patient stories, please contact Caitlin Donovan using the form below. For immediate deadlines, please call 202-465-5113.
The Philadelphia Tribune
Confronting new health insurance deductibles
“What we recommend is kind of to be crafty about how you approach your health care spending and plan as much as you can,” said the Patient Advocate Foundation’s Caitlin Donovan.
If Doctors Were Cost Conscious
For patients facing serious diagnoses, cost-of-care discussions can be particularly challenging, says Gwen Darien, a three-time cancer survivor who is now executive vice president of the National Patient Advocate Foundation in Washington, D.C. “We don’t prepare for being sick, and all of a sudden you’re dealing with bill after bill,” Darien says. “It’s difficult to figure out what your insurance will pay and how things will change from year to year. These types of conversations need to be normalized.”
The Fresno Bee
Coronavirus could mean hefty medical bills for California’s uninsured
Donovan’s advice to those who don’t have health insurance but need treatment: Apply for retroactive Medicaid coverage, look for financial aid at the hospital itself or from charities and check to see if you are eligible for housing or nutritional assistance to offset the cost of medical bills.
PBS News Hour
How uninsured patients can get help during COVID-19 pandemic
“Your health isn’t just about your medical expenses; it’s about you as an entire person,” Donovan with the National Patient Advocate Foundation said. “People pay for their health care with the same bank account that they pay for everything else.”
Practicing What We Preach
How NPAF is Putting People at the Heart of Care
It’s no secret that here at NPAF our vision is to bring person-centered care everywhere. We want it to be demanded by all patients and caregivers and integrated into all care settings. This vision is why we’ve been such strong advocates for community-based palliative care. The foundation of palliative care is based on person-centered principles: communicating with empathy; involving caregivers; and acknowledging that patient values and preferences are a fundamental part of delivering quality care. For this reason, NPAF supports state and federal legislation aimed at raising public awareness of palliative care and making training available to clinicians who treat people with serious illnesses.