Form 990 for tax year 2022

Totals

Total revenue

$276,274,188

Total expenses

$333,201,298

Contributions and grants received

$256,660,272

Grants paid

$305,058,200

Program service revenue

$10,889,711

Investment income

$8,793,628

Other revenue

-$69,423

Total assets, end of year

$345,144,684

Total liabilities, end of year

$33,351,723

Net assets or fund balances, end of year

$311,792,961

Program services expenses (Part IX)

$328,657,193

Management and general expenses

$3,213,576

Fundraising expenses

$1,330,529

Program service expenses (Part III)

$328,657,193

Program services were 98.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• FINANCIAL SUPPORT PROGRAMSFOR 19 YEARS, PAF'S CO-PAY RELIEF PROGRAM (CPR) HAS PROVIDED FINANCIAL ASSISTANCE FOR CO-PAYMENTS, CO-INSURANCE AND DEDUCTIBLES REQUIRED BY A PATIENT'S INSURER FOR MEDICATIONS PRESCRIBED TO TREAT AND/OR MANAGE THE PATIENT'S DISEASE.IN FY2022/2023, PAF'S CO-PAY RELIEF PROGRAM EXPANDED ITS IMPACT THROUGH THE ADDITION OF SEVEN (7) NEW FUNDS, ASSISTING PATIENTS SIXTEEN (16) HEALTH EQUITY (HE) FUNDS AND THIRTY-SIX (36) INCLUDING: ACROMEGALY, ALZHEIMER'S DISEASE HE, ASTHMA, BLADDER CANCER, BREAST CANCER, BREAST CANCER HE, CANCER GENETIC & GENOMIC TESTING, CERVICAL CANCER, CHRONIC OBSTRUCTIVE PULMONARY DISEASE HE, CORONARY ARTERY DISEASE HE, COVID-19, CYSTIC FIBROSIS, DIABETES, DIABETES HE, GAUCHER DISEASE, HEART FAILURE HE, HEMOPHILIA, HEPATITIS B, HEPATITIS C, HEPATITIS C HE, HEPATOCELLULAR CARCINOMA, HIV, AIDS & PREVENTION, HIV, AIDS & PREVENTION HE, HOMOZYGOUS FAMILIAL HYPERCHOLESTEROLEMIA, LUPUS, MELANOMA, METASTATIC BREAST CANCER, METASTATIC COLORECTAL CANCER, METASTATIC COLORECTAL CANCER HE, METASTATIC PROSTATE CANCER, MULTIPLE MYELOMA, MULTIPLE MYELOMA HE, MULTIPLE SCLEROSIS, MYELODYSPLASTIC SYNDROMES, NON-SMALL CELL LUNG CANCERS, NON-SMALL CELL LUNG CANCERS HE, OVARIAN CANCER, OVARIAN CANCER HE, PANCREATIC CANCER, PARKINSON'S DISEASE HE, PERIODIC PARALYSIS, PROSTATE CANCER, PROSTATE CANCER HE, PULMONARY FIBROSIS, PULMONARY HYPERTENSION, RHEUMATOID ARTHRITIS, SMALL CELL LUNG CANCER, SPINAL MUSCULAR ATROPHY, THYROID EYE DISEASE, ULCERATIVE COLITIS, UTERINE CANCERS HE, AND VIROLOGY TESTING HE.ALSO, IN FY2022/2023 PAF'S CO-PAY RELIEF PROGRAM ESTABLISHED SIX (6) NEW HEALTH EQUITY FUNDS, HEALTH EQUITY FUNDS SERVE PEOPLE LIVING IN 220 COUNTIES ACROSS THE UNITED STATES THAT HAVE BEEN IDENTIFIED BY THE CDC AS HAVING THE HIGHEST SOCIAL VULNERABILITY SCORES AND ARE BURDENED WITH HIGH RATES OF CHRONIC DISEASES. THE HEALTH EQUITY FUNDS ARE DESIGNED TO SPECIFICALLY PROVIDE SUPPORT TO ELIGIBLE PATIENTS LIVING IN ONE OF THE 220 COUNTIES COVERED BY THE FUNDS, WHICH IS VERIFIED USING THE ZIP CODE OF THE PATIENT'S HOME ADDRESS. ALL OTHER ELIGIBILITY REQUIREMENTS, AND FUND OPERATION, ARE THE SAME AS PAF'S GENERAL FUNDS. THE FOLLOWING SIX (6) NEW EQUITY FUNDS HELPED PATIENTS IN THESE 220 COUNTIES: ALZHEIMER'S DISEASE HE, PARKINSON'S DISEASE HE, CHRONIC OBSTRUCTIVE PULMONARY DISEASE HE, HEART FAILURE HE HIV, AIDS & PREVENTION HE, UTERINE CANCER HE. THE FOUNDATION'S CO-PAY RELIEF PROGRAM OFFERS A DEDICATED, SECURE WEB-BASED APPLICATION FOR PATIENTS AND/OR THEIR FAMILY MEMBERS TO ENROLL ELECTRONICALLY FOR THE CO-PAY RELIEF PROGRAM DIRECTLY FROM THE CO-PAY RELIEF PROGRAM WEBSITE. AS WELL, CPR OFFERS TWO DEDICATED, SECURED WEBSITES FOR MEDICAL PROVIDERS AND PHARMACY REPRESENTATIVES TO ENROLL ELECTRONICALLY FOR THE CO-PAY RELIEF PROGRAM ON BEHALF OF THE PATIENTS THEY ARE WORKING WITH. THE FOUNDATION ALSO OFFERS TELEPHONIC SUPPORT SERVICES TO PATIENTS WHO PREFER TO RECEIVE PERSONAL ASSISTANCE FROM A PROGRAM SPECIALIST.IN FY2022/2023, THE FOUNDATION ADMINISTERED CO-PAYMENT ASSISTANCE TO 78,584 QUALIFIED PATIENTS THROUGH 52 ASSISTANCE FUNDS AVAILABLE THROUGH THE CO-PAY RELIEF PROGRAM. THE PROGRAM STAFF FIELDED 185,747 TELEPHONE CALLS AND PROCESSED CLAIMS TOTALING OVER $306,808,905 IN SUPPORT OF QUALIFIED PATIENTS' OUT OF POCKET EXPENSES FOR REQUIRED CO-PAYMENTS, CO-INSURANCE, AND DEDUCTIBLES. SINCE ITS INCEPTION IN 2004, THE FOUNDATION HAS PROVIDED CO-PAYMENT ASSISTANCE TO OVER 678,000 INDIVIDUALS ALLOCATING NEARLY $2.2 BILLION DOLLARS IN CO-PAYMENT AWARDS.THE FOUNDATION ALSO ADMINISTERED A SUITE OF SIXTEEN (16) SMALL GRANT PROGRAMS IN FY2022/2023, REFERRED TO AS FINANCIAL AID FUNDS, EACH PROVIDING FINANCIAL ASSISTANCE TO QUALIFIED PATIENTS FOR OUT OF POCKET AND COST OF LIVING EXPENSES PATIENTS STRUGGLE TO MANAGE WHEN DEALING WITH A CHRONIC OR CRITICAL DISEASE. IN FY2022/2023, PROGRAM STAFF FIELDED 16,097 TELEPHONE CALLS AND SUCCESSFULLY PROVIDED ONE-TIME SMALL GRANTS TO 1,641 PATIENTS, TOTALING $2,267,500 IN FINANCIAL RELIEF. IN FY2021/2022, 1,509 PATIENTS RECEIVED FINANCIAL RELIEF FROM SEVENTEEN (17) FINANCIAL FUNDS, TOTALING $963,300.THESE GRANTS RANGED FROM $300 - $2,500 PER PATIENT AND ARE DESIGNED FOR NON-MEDICAL EXPENSES, INCLUDING TRANSPORTATION, LODGING, NUTRITIONAL NEEDS, CHILDCARE, AND BURIAL EXPENSES, FACED BY PATIENTS BECAUSE OF THEIR DIAGNOSIS AND TREATMENT. IN 2022 AND 2023, THE FINANCIAL AID FUND PROGRAMS INCLUDE:O DONNA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH BREAST CANCER THAT HAVE RECEIVED CASE MANAGEMENT SERVICES THROUGH THE DONNA CARELINE.O HEART VALVE FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A VALVULAR CONDITION.O LEISHLINE FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH ARDS, TSS AND/OR SEPSIS.O ANGEL FUND: SUPPORTS FUNERAL EXPENSES ASSOCIATED WITH PATIENTS WHO HAVE PASSED AND DIED FROM ARDS, TSS AND/OR SEPSIS.O MERKEL CELL CARCINOMA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A RARE FORM OF SKIN CANCER.O NATIONAL OVARIAN CANCER COALITION CLINICAL TRAIL FUND: SUPPORTS PATIENTS THAT HAVE BEEN DIAGNOSED WITH OVARIAN CANCER, FALLOPIAN TUBE CANCER OR PERITONEAL CANCER AND ARE PARTICIPATING IN A CLINICAL TRIAL, BY PROVIDING FINANCIAL ASSISTANCE FOR COST-OF-LIVING EXPENSES.O NATIONAL OVARIAN CANCER COALITION TREATMENT FUND: SUPPORTS PATIENTS THAT HAVE BEEN DIAGNOSED WITH OVARIAN CANCER, FALLOPIAN TUBE CANCER OR PERITONEAL CANCER, BY PROVIDING FINANCIAL ASSISTANCE FOR COST-OF-LIVING EXPENSES.O ZERO DRIVE PROGRAM: PROVIDES FINANCIAL ASSISTANCE FOR TRAVEL COSTS TO PATIENTS LIVING IN FLORIDA, GEORGIA, IOWA, NEW YORK, NORTH CAROLINA, PENNSYLVANIA, SOUTH CAROLINA, AND TEXAS, WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER.O PEDIATRIC AMINO ACID AND METABOLIC FORMULAS EMERGENCY ASSISTANCE FUND: PROVIDES DIRECT FINANCIAL ASSISTANCE TO FAMILIES WHO HAVE EXPERIENCED UNEXPECTED COSTS RELATED TO AN IN-PATIENT HOSPITALIZATION OR EMERGENCY ROOM VISIT OF A CHILD WHO IS RELIANT ON AMINO ACID-BASED FORMULAS FOR NUTRITION BUT COULD NOT CONSISTENTLY ACCESS THEM DUE TO THE SHORTAGE AND EXPERIENCED A MEDICAL CRISIS AS A RESULT.

  Expenses $312,818,453 · Grants $304,953,200

• NON-PROFIT SERVICE AGREEMENTSIN 2009, THE FOUNDATION ENTERED INTO A TRANSPARENT SERVICE ADMINISTRATION AGREEMENT WITH A NATIONAL NONPROFIT ORGANIZATION. THE FOUNDATION HAS BEEN ENGAGED TO PROVIDE FULL SERVICE, TRANSPARENT ADMINISTRATION SERVICES TO QUALIFIED PATIENTS THAT ENTER THEIR CO-PAY ASSISTANCE AND PATIENT FINANCIAL AID PROGRAMS. THE FOUNDATION CONTINUED TO PROVIDE THIS CONTRACTUAL SERVICE DURING 2023 AND 2022. THE FOUNDATION ADMINISTERED SERVICES TO 69,619 AND 74,774 PATIENTS IN 2023 AND 2022, RESPECTIVELY, THROUGH THIS SERVICE AGREEMENT.

  Expenses $8,396,814 · Revenue $10,749,979

• CASE MANAGEMENT SERVICESFOR 27 YEARS, THE FOUNDATION HAS PROVIDED CASE MANAGEMENT INTERVENTIONS ON BEHALF OF CRITICALLY OR CHRONICALLY ILL PATIENTS NATIONALLY; ENABLING THEM TO CONNECT WITH, AND MAINTAIN ACCESS TO, PRESCRIBED HEALTHCARE SERVICES AND MEDICATIONS, OVERCOME INSURANCE BARRIERS, LOCATE RESOURCES TO SUPPORT COST-OF-LIVING EXPENSES WHILE IN TREATMENT, EVALUATE AND MAINTAIN HEALTH INSURANCE COVERAGE AND BETTER MANAGE, OR REDUCE, THE OUT-OF-POCKET MEDICAL AND COST OF LIVING DEBT THEY FACE. PAF PROVIDES ONE-ON-ONE PROFESSIONAL CASE MANAGEMENT SERVICES, WORKING ALONGSIDE PATIENTS, THEIR LOVED ONES, AND THEIR CARE TEAMS, OFTEN TAKING THE LEAD TO RESOLVE COMPLEX HEALTHCARE ACCESS AND AFFORDABILITY CHALLENGES ENCOUNTERED IN THE HEALTHCARE SYSTEM. CASE MANAGEMENT SERVICES ARE PROVIDED AT NO COST TO PATIENTS AND THEIR FAMILIES. DURING FY2022/2023, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY WORKED WITH OR ON BEHALF OF 18,394 INDIVIDUALS. THESE PATIENTS REPRESENTED 1,064 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH ISSUES THAT WERE CREATING OBSTACLES TO CARE. ON AVERAGE, CASE MANAGERS MADE 25 CONTACTS ON BEHALF OF EACH CASE TO RELEVANT STAKEHOLDERS TO BRING RESOLUTION TO THE PATIENT'S ISSUES. THIS WORK TRANSLATES TO APPROXIMATELY 458,929 UNIQUE CONTACTS AND AN AVERAGE DEBT RELIEF/PATIENT SAVINGS OF $1,239 PER CASE ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT SERVICES. PAF ALSO PROVIDED 3,551 EDUCATION PUBLICATIONS TO THE PATIENTS SERVED BY CASE MANAGEMENT AND THOSE WHO REQUESTED EDUCATIONAL INFORMATION. PAF PROVIDES THESE SERVICES THROUGH A COMPLEMENT OF 35 UNIQUE PROGRAMS.DURING FISCAL YEAR 2022 AND 2023, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY INTERVENED ON BEHALF OF 18,923 INDIVIDUALS. THESE PATIENTS ARE COLLECTIVELY LIVING WITH 1,004 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH AN AVERAGE OF TWO ISSUES THAT WERE CREATING OBSTACLES TO CARE. ON AVERAGE, CASE MANAGERS MADE 19.8 CONTACTS ON BEHALF OF EACH CASE TO RELEVANT STAKEHOLDERS TO BRING RESOLUTION TO THE PATIENT'S ACCESS ISSUES. THIS TRANSLATES TO OVER 374,555 UNIQUE CONTACTS ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT INTERVENTION SERVICES. PAF PROVIDED THESE SERVICES THROUGH A COMPLEMENT OF 34 UNIQUE PROGRAMS.

  Expenses $7,441,926 · Grants $105,000 · Revenue $139,732

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

• NATIONAL PATIENT ADVOCATE FOUNDATION (NPAF)

  501(C)(3) · SEEKS TO REMOVE OBSTACLES TO HEALTHCARE ACCESS FOR PATIENTS · VA

  Directly controlled by NPAF IS THE SISTER ORGANIZATION TO PAF MRBALCH IS CEO OF AND PAID BY BOTH

Provenance

Return type

form_990

Tax year

2022

Filed

2 November 2023

IRS schema version

2022v5.0

Source object

202343149349301349

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