Learn more about the Patient Advocate Foundation and how they advocate for health care policies and collaborate with community partners to advance person-centered care and an equitable health care system for all Americans.
PreemieWorld Interview with Erin Bradshaw, Chief of Mission Delivery, Patient Advocate Foundation
PREEMIEWORLD: How did PAF come about? What is its mission and goals?
ERIN: Mission: Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
History: Patient Advocate Foundation (PAF) and National Patient Advocate Foundation (NPAF) was founded in 1996 after our founder, Nancy Davenport-Ennis became involved in a legislative reform on behalf of cancer patients while a dear friend of hers, Cheryl Grimmel, was battling both breast cancer and her insurance company. As Cheryl valiantly fought her fight, Nancy shared previously underrepresented patient’s perspective and fought to reform insurance coverage for cancer patients.
Cheryl lost her battle with breast cancer in December 1994, and on the night of her funeral Nancy Davenport-Ennis and husband Jack Ennis wrote business plans for two complementary nonprofit organizations geared towards solving the issues faced by patients like Cheryl. NPAF and PAF were born in concept that night and became a reality in April 1996. PAF offers case management intervention to alleviate access to affordable care one patient at a time while NPAF focuses to move change through policy and regulatory and accreditation bodies to expand the impact to millions of patients.
PAF offers the following program and services to patients. To learn more about eligibility and availability visit the links below.
PAF Case Management (I will share more details in the following questions)
PAF Co-Pay Relief Program providing direct financial assistance to qualified patients with co-payments, co-insurance and deductibles for prescribed medications and insurance premium for those who financially and medically qualify.
PAF Financial Assistance Funds providing small grants for non-medical related expenses to patients who meet financial and medical criteria
Available funds, guidelines, eligibility and application:
Scholarship for Survivors Program offers educational scholarships to students pursuing undergraduate or graduate studies who have been diagnosed with or treated for a cancer or chronic disease
Guidelines, eligibility, and application:
Patient Education & Empowerment Resources provide actionable advice and guidance to consumers that improve their everyday experience with health insurance, disability and financial barriers and empower their actions related to care. These tools are modeled after the case management services and barriers that present.
PREEMIEWORLD: What types of services does PAF provide its clients?
ERIN: PAF Case Management offers a free, one-on-one support to patients and families to help them solve obstacles that are impeding their access to prescribed healthcare. We focus our work in the areas of benefits, prescribed access to healthcare for the uninsured and insured and financial burden hindering their ability to get or afford prescribed care during the most vulnerable times of their chronic health condition.
To receive our case management services, a patient must:
- The patient is living with, under surveillance or in treatment for a serious or chronic health condition OR the patient is being screened due to family history or suspected serious or chronic health condition.
- The patient is a U.S. citizen or a legal permanent resident of the United States.
- The patient is getting or had treatment in the United States or a U.S. territory
- The patient is seeking help with any of the following needs related to their serious or chronic health condition:
- Accessing prescribed healthcare including understanding their healthcare benefits
- Issues related to their health insurance benefits, including denials of care, out -of-pocket costs, network issues and insurance options
- Lack of insurance, insurance with high out-of-pocket requirements and/or service limitations
- Financial concerns including daily cost-of-living expenses and medical expenses
- Practical needs including transportation and nutritional needs
- Assistance with eligibility, completing or appealing an application for disability
- Assistance with eligibility and accessing employment protections & workplace entitlements such as disability income replacement policies (STD/LTD), Family Medical Leave (FMLA) , Americans with Disabilities Act (ADA) or Continuation of Health Coverage (COBRA) for terming health insurance.
Our families have gone from a high-risk pregnancy to having a baby in the Neonatal Intensive Care Unit (NICU) to home with equipment and a tough situation surrounding a special needs child short-term but more likely long-term. They are struggling with working with hospital pros, community doctors’ pros, specialists, therapists and more. It’s not just bills, it is having insurance to actually cover expenses, it is about getting their child the right help and treatments and educating family and friends on the fact that the baby is not a typical full-term infant. It is also about managing life around all of this and managing stress and depression.
PREEMIEWORLD: What would a family benefit from connecting with PAF?
ERIN: Health insurance is critical to financial security for the care the special needs child will have. However, health insurance benefit design is important to understand. There is out of pocket responsibility for the patient and family, provider networks to follow and limitations that may hinder needed services. There may be times when needed services are not covered or limited. There may be appeal options and they should be explored.
During open enrollment and qualifying events reviewing health insurance options to best match the needs of your child is very important. Also reviewing all eligibility into programs like Medicaid, financial assistance programs or state or diagnosis services your child may be entitled to.
For many parents this may change the finances of the household, change a working household to a sole provider and increase costs that are not budgeted for the medical needs of the child. It’s important to sit down and relook at budgets with income and liabilities. Include any known additional expenses and determine if there are any changes that can occur to help elevate the added financial burden.
PAF case management can help with the practical elements around access, insurance and financial hurdles, this can address emotional distress. However, professional support would be best to seek through a therapist, doctor, social worker at the hospital or support group to help with caring for a special needs child and the sudden changes to lifestyle.
PREEMIEWORLD: What types of help have you given families with special needs children?
ERIN: Our services are tailored to assist the supported families overcome insurance obstacles, enroll into qualifying benefits and safety net programs of services offered. Examples of request included:
Enroll into Appropriate Insurance, Charity and Social Programs
• Eligibility, enrollment and appeal support for Medicaid/CHIP/Waivers, Social Security Disability (SSI), ACA and other Insurance Products
• Insurance related financial support: co-pay, premiums, deductible, charity care, discounts and indigent drug programs
• Screening for eligibility for charity care, negotiation of payment plans or discounts for medical care and services
• Supporting/securing prior authorization and overcoming denials (i.e.: appeals) for prescribed care
• Provide help with the health insurance appeal process at all levels
• Resolving insurance coding and billing issues
• Clinical Trial screening and enrollment
• Health insurance benefit review for second opinions, network providers/facilities, and coverage *We do not provide recommendation of specific providers, facilities or treatment
• Reduce Financial Burden by identifying local, regional and national financial assistance resources for cost of living, nutritional needs, transportation, utilities and medical related expense, aiding with application as necessary.
PREEMIEWORLD: Is there anything else you would like to say?
ERIN: At the Patient Advocate Foundation, we know that having a child with special needs can be overwhelming. It can complicate daily life and cause extreme stress for families. Challenges like these can distract from what’s most important– treatment and recovery. At PAF we offer a helping hand to guide them through the world’s most complicated and expensive healthcare system, whether that means helping them get to care, pay for food and housing, negotiating with their insurance carrier, or literally keeping the lights on. Along the way, we strive to empower patients to be advocates for themselves and others to amplify the patient voice. This is a lifelong journey and knowledge is a key to improving outcomes and becoming your own advocate for your child and yourself. The system is complicated and there can be large gaps in what is covered and needed. Be diligent in turning over every stone, talking to others and utilizing your rights when you disagree with a decision for coverage.