Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
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(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 256,660,272 | 1,371,653,568 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 256,660,272 | 1,371,653,568 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 1,096,893,356 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 274,760,212 | |||||
Calendar year
(or fiscal year beginning in)
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(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 256,660,272 | 1,371,653,568 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 5,514,479 | 3,816,326 | 718,528 | 580,710 | 8,804,586 | 19,434,629 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | 1,391,088,197 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2018 | (b) 2019 | (c) 2020 | (d) 2021 | (e) 2022 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2022 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2022 |
(iii) Distributable Amount for 2022 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2022 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2022 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2022: | ||||
| a From 2017....... | ||||
| b From 2018....... | ||||
| c From 2019....... | ||||
| d From 2020....... | ||||
| e From 2021....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2022 distributable amount | ||||
|
i
Carryover from 2017 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2022 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2022 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2022, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2022. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
7 Excess distributions carryover to 2023. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2018..... | ||||
| b Excess from 2019..... | ||||
| c Excess from 2020..... | ||||
| d Excess from 2021..... | ||||
| e Excess from 2022..... | ||||
| Facts And Circumstances Test |
|---|
| PATIENT ADVOCATE FOUNDATIONSECTION 170(B) (1) (A) ORGANIZATIONFACTS & CIRCUMSTANCES TEST; FY2022/2023PATIENT ADVOCATE FOUNDATION OFFERS THE FOLLOWING FACTS AND CIRCUMSTANCES IN SUPPORT OF ITS ONGOING CLASSIFICATIONS AS A PUBLIC CHARITY AS DEFINED IN SECTION 170(B) (1) (A).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. SINCE 1996, PAF HAS PROVIDED FINANCIAL AND INSURANCE NAVIGATION, SOCIAL SERVICES SUPPORT, DIRECT FINANCIAL SUPPORT AND EDUCATIONAL SERVICES TO NEARLY 2 MILLION PATIENTS AND CAREGIVERS EXPERIENCING DISTRESSING FINANCIAL, EMPLOYMENT, INSURANCE COVERAGE OR HOUSEHOLD MATERIAL HARDSHIPS BECAUSE OF THEIR HEALTH CONDITIONS AND ASSOCIATED TREATMENT. WE'VE SEEN IN PAF'S 25+ YEARS SERVING PATIENTS AND FAMILIES THROUGH OUR PROGRAMS THAT PATIENTS' TOTAL COSTS OF CARE INCLUDE MEDICAL AND NONMEDICAL EXPENDITURES THAT CAN QUICKLY OVERWHELM EVEN THE BEST PLANNED HOUSEHOLD BUDGET. THESE UNEXPECTED EXPENSES FURTHER COMPOUND HEALTH INEQUITIES AND ECONOMIC CHALLENGES THAT INDIVIDUALS AND FAMILIES ARE ALREADY CONFRONTING, PARTICULARLY AMONG POPULATIONS WITH LOW SOCIO-ECONOMIC CHARACTERISTICS, COMMUNITIES OF COLOR AND THOSE LIVING IN RURAL REGIONS OR MEDICAL SHORTAGE AREAS. THROUGH THIS WORK WE HAVE CREATED AND CURATED AN EXTENSIVE CATALOGUE OF RESOURCES, EXPERIENCE, AND EXPERTISE IN DESIGNING AND IMPLEMENTING DIRECT PATIENT SERVICE PROGRAMS AS WELL AS ANALYZING DATA TO SUPPORT OUR ROBUST RESEARCH AND EVALUATION PORTFOLIO TO PROMOTE THE IMPORTANCE OF THE DELIVERY OF SOCIAL NEEDS NAVIGATION AS A PERSON-CENTERED AND PATIENT-ACTIVATED HEALTH EQUITY SOLUTION.THE FOUNDATION HAS DEVELOPED AND DELIVERS A DIVERSE PORTFOLIO OF PATIENT CENTERED PROGRAMS TO PATIENTS AND THEIR FAMILIES INCLUDING IN DEPTH CASE MANAGEMENT SERVICES, SMALL GRANT PROGRAMS THAT PROVIDE SUPPORT FOR COST-OF-LIVING EXPENSES FOR LOW-INCOME PATIENTS, AND PATIENT EDUCATIONAL PROGRAMS DELIVERED IN PRINT, DIGITAL, VIDEO AND ONLINE INTERACTIVE FORMATS. THE FOUNDATION ALSO ADMINISTERS THE CO-PAY RELIEF PROGRAM (CPR), PROVIDING FINANCIAL SUPPORT FOR CO-PAYMENTS AND COINSURANCE REQUIRED FOR PHARMACEUTICAL TREATMENTS PRESCRIBED TO TREAT AND/OR MANAGE CERTAIN CHRONIC AND LIFE-THREATENING CONDITIONS. THROUGH THE FOUNDATION'S COMPLIMENT OF CASE MANAGEMENT, FINANCIAL ASSISTANCE AND EDUCATIONAL PROGRAMS, THE FOUNDATION ASSISTS TENS OF THOUSANDS OF PATIENTS LIVING THROUGHOUT THE UNITED STATES AND US TERRITORIES EVERY YEAR. PAF SERVED 185,797 PATIENTS IN FY2022/2023, INCLUDING CASE MANAGEMENT SERVICES AND THE PROVISION OF FINANCIAL ASSISTANCE. PAF HAS PROVIDED HELP AND ASSISTANCE TO NEARLY 1.9 MILLION PATIENTS AND FAMILIES SINCE ITS INCEPTION IN 1996. PAF IS PUBLICLY SUPPORTED, PRIMARILY RECEIVING ITS SUPPORT THROUGH CHARITABLE CONTRIBUTIONS, GRANTS, COOPERATIVE AGREEMENTS WITH GOVERNMENTAL AGENCIES AND OTHER 501(C)3 NON-PROFIT ORGANIZATIONS AND DONATIONS FROM THE GENERAL PUBLIC, THUS, ALLOWING PAF TO OFFER ITS DIVERSE PROGRAMMING TO PATIENTS COMPLETELY FREE OF CHARGE.CASE MANAGEMENT & FINANCIAL SUPPORT PROGRAMSFOR 27 YEARS, PATIENT ADVOCATE FOUNDATION (PAF) HAS PROVIDED CASE MANAGEMENT INTERVENTIONS ON BEHALF OF CRITICALLY OR CHRONICALLY ILL PATIENTS WHO ARE RESIDENTS OF THE US AND ITS TERRITORIES; 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. THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY INTERVENED ON BEHALF OF 18,394 INDIVIDUALS, LIVING IN ALL 50 STATES, IN FY2022/2023. THESE PATIENTS ARE LIVING WITH 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 ACCESS ISSUES. THIS REPRESENTS A 26% INCREASE IN CONTACTS PER CASE OVER LAST FY. THIS TRANSLATES TO 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 THOUSANDS OF 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. PAF 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. THE SMALL GRANTS RANGE FROM $300-$2500 PER PATIENT AND ARE DESIGNED TO DEFRAY NON-MEDICAL EXPENSES, INCLUDING TRANSPORTATION, LODGING, NUTRITIONAL NEEDS, CHILDCARE AND BURIAL EXPENSES, FACED BY PATIENTS BECAUSE OF THEIR DIAGNOSIS AND TREATMENT. THE FINANCIAL AID FUND PROGRAMS INCLUDE:- DONNA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH BREAST CANCER THAT HAVE RECEIVED CASE MANAGEMENT SERVICES THROUGH THE DONNA CARELINE- HEART VALVE FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A VALVULAR CONDITION -LEISHLINE FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH ARDS, TSS AND/OR SEPSIS -ANGEL FINANCIAL AID FUND: SUPPORTS FUNERAL EXPENSES ASSOCIATED WITH PATIENTS WHO HAVE PASSED AND DIED FROM ARDS, TSS AND/OR SEPSIS -MERKEL CELL CARCINOMA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A RARE FORM OF SKIN CANCER -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. -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. -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 WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER. LAUNCHED IN 2004 IN RESPONSE TO A CRITICAL MASS OF PATIENTS REPORTING THEIR NEED FOR SUPPORT WITH UNMANAGEABLE CO-PAYMENTS FOR LIFE SAVING MEDICINES, PATIENT ADVOCATE FOUNDATION'S CO-PAY RELIEF PROGRAM (CPR) PROVIDES NEEDS-BASED FINANCIAL ASSISTANCE WITH CO-PAYMENTS, CO-INSURANCE AND DEDUCTIBLES REQUIRED BY A PATIENT'S INSURER FOR PHARMACEUTICAL TREATMENTS AND/OR PRESCRIPTION MEDICATIONS PRESCRIBED, TO TREAT AND/OR MANAGE THE PATIENT'S DISEASE. THE PROGRAM ALSO PROVIDES SUPPORT FOR MEDIATION ADMINISTRATION CHARGES, OFFICE VISIT COSTS THE DAY OF TREATMENT AND MEDICAL INSURANCE PREMIUM EXPENSES. TO QUALIFY FOR A GIVEN DISEASE-SPECIFIC FUND, AN APPLICANT MUST (1) HAVE A CONFIRMED DIAGNOSIS THAT IS SUPPORTED BY THE DISEASE FUND, (2) HAVE A TREATMENT REGIMEN IN PLACE, (3) HAVE AND MAINTAIN HEALTH INSURANCE AND (4) MEET THE FINANCIAL CRITERIA SET FORTH BY CPR FOR THE FUND. THE PROGRAM OFFERS PERSONAL SERVICE TO ALL PATIENTS USING CALL COUNSELORS; PERSONALLY, GUIDING PATIENTS THROUGH THE ENROLLMENT AND BENEFIT PROCESS AS WELL AS ONLINE TOOLS THAT CAN BE USED BY PATIENTS, PROVIDERS AND PHARMACIES TO MAKE APPLICATION FOR ASSISTANCE.PAF DOES NOT CONSIDER THE IDENTITY OF ANY PHYSICIAN, PROVIDER, SUPPLIER OF ITEMS OR SERVICES, DONOR, DRUG THERAPY, SERVICES OR SUPPLIES BEING UTILIZED OR THE REFERRAL SOURCE WHEN ASSESSING WHETHER AN APPLICANT IS QUALIFIED FOR FINANCIAL ASSISTANCE FROM A PAF CPR DISEASE-SPECIFIC FUND. UNDER NO CIRCUMSTANCES WILL PAF RECOMMEND OR REFER AN APPLICANT OR ENROLLEE TO ANY FUND DONOR, PROVIDER, SUPPLIER, OR PRODUCT.(CONTINUED ON SCHEDULE O) |
| Return Reference | Explanation |
|---|
| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| FORM 990, PART VI, SECTION B, LINE 11B | THE FINANCE COMMITTEE OF THE BOARD OF DIRECTORS RECEIVES A DRAFT COPY OF THE FORM 990 THEN SUBSEQUENTLY REVIEWS IT FOR ACCURACY AND COMPLIANCE. ONCE IT IS APPROVED BY THE FINANCE COMMITTEE, ALL MEMBERS OF THE EXECUTIVE BOARD OF DIRECTORS RECEIVE THE FINAL COPY OF THE FORM 990 FOR REVIEW AND APPROVAL PRIOR TO FILING AND IS SO NOTED IN THE BOARD MEETING MINUTES. |
| FORM 990, PART VI, SECTION B, LINE 12C | UNDER THE DIRECTION OF THE GOVERNANCE COMMITTEE, MEMBERS OF THE PAF BOARD OF DIRECTORS ARE REQUIRED TO REVIEW AND SIGN THE CONFLICT OF INTEREST POLICY UPON ESTABLISHING MEMBERSHIP ON THE BOARD AND AGAIN ANNUALLY. THIS INCLUDES COMPLETING AN UPDATED CONFLICT OF INTEREST DISCLOSURE QUESTIONNAIRE IN WHICH EACH MEMBER MUST DISCLOSE ANY/ALL KNOWN CONFLICTS OF INTEREST AT THAT TIME. IF ANY CONFLICTS OF INTEREST ARE NOTED MORE INFORMATION WILL BE GATHERED BY THE GOVERNANCE COMMITTEE AND A DETERMINATION ON THE EXISTENCE OF A MATERIAL CONFLICT WILL BE ISSUED. THE GOVERNANCE COMMITTEE OF THE BOARD OF DIRECTORS IS CHARGED WITH ENFORCEMENT OF THIS POLICY. |
| FORM 990, PART VI, SECTION B, LINE 15 | PATIENT ADVOCATE FOUNDATION COMPLETES COMPENSATION STUDIES THAT UTILIZE NATIONAL COMPARABILITY DATA OF ORGANIZATIONS SIMILAR IN MISSION, SIZE AND REVENUES. PAF HAS A COMPENSATION COMMITTEE WITHIN THE BOARD OF DIRECTORS THAT CONSISTS OF AT LEAST 4 INDEPENDENT EXECUTIVE BOARD MEMBERS AND IS CHAIRED BY THE BOARD PRESIDENT. THIS COMMITTEE IS PROVIDED WITH THE COMPENSATION REPORT AND UTILIZES IT TO ESTABLISH THE CEO'S ANNUAL COMPENSATION. THIS COMMITTEE ALSO REVIEWS THE COMPENSATION OF KEY EMPLOYEES UTILIZING THE COMPENSATION REPORT. THIS PROCESS IS DOCUMENTED THROUGH MINUTES OF THE COMPENSATION COMMITTEE MEETING. |
| FORM 990, PART VI, SECTION C, LINE 19 | PATIENT ADVOCATE FOUNDATION MAKES AVAILABLE THE LAST 10 YEARS OF FORM 990S, AUDITED FINANCIAL STATEMENTS, ANNUAL REPORTS AND CURRENT LIST OF BOARD MEMBERS ON THE ORGANIZATION'S WEBSITE, WWW.PATIENTADVOCATE.ORG UNDER THE "LEARN ABOUT US" SECTION. ADDITIONALLY, PAF MAKES AVAILABLE THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, ARCHIVED FORM 990S (OLDER THAN 10 YEARS) AND AUDITED FINANCIAL STATEMENTS (OLDER THAN 10 YEARS) UPON REQUEST. |
| FORM 990, PART XI, LINE 9: | POSTRETIREMENT BENEFIT CHANGES OTHER THAN PERIODIC BENEFITS/COSTS -45,989. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE A (A) QUALIFYING APPLICANTS ARE ENROLLED IN A DISEASE-SPECIFIC FUND FOR UP TO ONE YEAR FROM THE DATE OF ENROLLMENT AND MUST RE-APPLY THEREAFTER TO CONTINUE RECEIVING ASSISTANCE FROM A GIVEN DISEASE-SPECIFIC FUND. ENROLLMENT IN AND FINANCIAL ASSISTANCE FROM ANY DISEASE-SPECIFIC FUND IS PROVIDED ON A FIRST COME, FIRST SERVE BASIS TO THE EXTENT FUNDING IS AND REMAINS AVAILABLE. FINANCIAL ASSISTANCE FROM ANY CPR DISEASE-SPECIFIC FUND IS NOT DEPENDENT ON THE USE A PARTICULAR DRUG OR PROVIDER AND ENROLLEES ARE FREE TO SWITCH DRUG THERAPIES, TREATING PHYSICIANS, PHARMACIES, AND SUPPLIERS AT ANY TIME WITHOUT AFFECTING THEIR CONTINUED ELIGIBILITY FOR FINANCIAL ASSISTANCE FROM A DISEASE-SPECIFIC FUND. ENROLLEES ARE REQUIRED TO INFORM PAF IN THE EVENT THEIR FINANCIAL CIRCUMSTANCES CHANGE, AND/OR THEY LOSE THEIR HEALTH INSURANCE COVERAGE DURING THEIR ENROLLMENT PERIOD AS SUCH CHANGES MAY AFFECT ENROLLEE ELIGIBILITY FOR A GIVEN CPR FUND. 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) EXISTING FUNDS 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. PAF'S CO-PAY RELIEF PROGRAM ESTABLISHED HEALTH EQUITY FUNDS IN 2022, A NEW TYPE OF FUND THAT MAKES CPR MORE ACCESSIBLE AND BENEFICIAL FOR PATIENTS WHO NEEDED THE MOST HELP AND ARE NOT BEING SERVED ADEQUATELY BY THE EXISTING MEDICAL AND COPAY INFRASTRUCTURE. DEVELOPED USING THE CDC'S SOCIAL VULNERABILITY INDEX (SVI) AND CDC DISEASE INCIDENCE DATA, OUR 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 OUR GENERAL FUNDS. IN FY2022/2023, ESTABLISHED SIX (6) NEW HEALTH EQUITY FUNDS INCLUDING: ALZHEIMER'S DISEASE HE, PARKINSON'S DISEASE HE, CHRONIC OBSTRUCTIVE PULMONARY DISEASE HE, HEART FAILURE HE HIV, AIDS & PREVENTION HE, UTERINE CANCER HE. PAF HAS PROVIDED NEARLY 10,000 PATIENTS WITH ASSISTANCE THROUGH THE HE FUNDS. 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 COPAYMENT 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 601,000 INDIVIDUALS ALLOCATING MORE THAN $1.8 BILLION IN CO-PAYMENT AWARDS. 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. HEALTH EQUITY INITIATIVE, COMMUNITY OUTREACH & PATIENT ENGAGEMENT ADDRESSING HEALTH EQUITY IS A STRATEGIC IMPERATIVE FOR PATIENT ADVOCATE FOUNDATION, THE EVOLUTION OF THIS COMMITMENT PEAKED IN 2022 WITH THE LAUNCH OF STRATEGIC INITIATIVES INCLUDING THE PAF HEALTH EQUITY CASE MANAGEMENT PROGRAM AND THE HEALTH EQUITY CO-PAY RELIEF FUNDS. PAF'S COMMITMENT IS SHAPED BY THE STORIES OF THE PATIENTS SERVED BY THE FOUNDATION AND INFORMED BY THE EMPLOYEES THAT ENRICH PAF OPERATIONS AND DELIVER EXCEPTIONAL CUSTOMER SERVICE. SPECIFIC ACTIVITIES FOCUS ON TACKLING SOCIAL/FINANCIAL SUPPORT NEEDS AND MITIGATING BARRIERS THAT IMPACT ACCESS TO HEALTH SERVICES. IN FY2022/2023, PAF CONTINUED WORK UNDER ITS COOPERATIVE AGREEMENT FROM THE CDC'S OFFICE OF SMOKING ON HEALTH AND THE DIVISION OF CANCER PREVENTION AND CONTROL (DCPC) TO CONTINUE ADMINISTRATION OF THE SELFMADE HEALTH NETWORK (SMHN). THE SMHN FOCUSES PROVIDING TECHNICAL ASSISTANCE TO STATE CANCER CONTROL AND TOBACCO USE PREVENTION PROGRAMS TO ENHANCE THEIR CAPACITY TO IMPLEMENT EVIDENCE-BASED STRATEGIES TO REDUCE TOBACCO AND CANCER RELATED DISPARITIES AMONG POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS. SMHN CONTINUES TO EXPAND ITS EFFORTS TO PROVIDE HANDS-ON TECHNICAL ASSISTANCE AND TRAINING OPPORTUNITIES TO ENHANCE THE KNOWLEDGE AND SKILL CAPACITY OF CDC SUPPORTED NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAMS AND NATIONAL TOBACCO PREVENTION AND CONTROL PROGRAMS STAFF THROUGH THREE DISTINCT OFFERING: 1). THE SMHN TRAINING AND TECHNICAL ASSISTANCE HUB TO ADDRESS TOBACCO DISPARITIES (THE HUB); SMHN WEBINAR SERIES; AND 3) THE QUAD-NETWORKS HPV VACCINATION LEARNING COLLABORATIVE (THE COLLABORATIVE). TRAINING AND TECHNICAL ASSISTANCE ACTIVITIES ARE DESIGNED TO PROVIDE HANDS-ON SUPPORT TO FACILITATE IMPLEMENTATION OF EVIDENCE-INFORMED STRATEGIES TO DECREASE TOBACCO AND CANCER RELATED DISPARITIES BY APPLYING EQUITY CENTERED STRATEGIES AND INCREASE HUMAN PAPILLOMAVIRUS (HPV) VACCINATION TO PREVENT HPV RELATED CANCERS. HUB PARTICIPATING STATES INCLUDE NORTH DAKOTA, NEW YORK, MAINE, CONNECTICUT, OHIO, OKLAHOMA, UTAH, NEBRASKA, AND NEW MEXICO. THE COLLABORATIVE PARTICIPATING STATES INCLUDE FLORIDA, RHODE ISLAND, KANSAS, WEST VIRGINIA, OKLAHOMA (CHEROKEE NATION). SMHN DEVELOPMENT AND IMPLEMENTED A THREE-PART LUNG CANCER DISPARITIES WEBINAR SERIES FEATURING THE FOLLOWING TOPICS: LUNG CANCER DISPARITIES: ADDRESSING GAPS AND OPPORTUNITIES TO IMPROVE HEALTH OUTCOMES AND HEALTH EQUITY AMONG LOW-INCOME POPULATIONS AND OTHER POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS (PART 1); LUNG CANCER DISPARITIES: ADDRESSING GAPS AND OPPORTUNITIES TO IMPROVE HEALTH OUTCOMES AND HEALTH EQUITY AMONG LOW-INCOME POPULATIONS AND OTHER POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS (PART 2); AND LUNG CANCER DISPARITIES: ADDRESSING GAPS AND OPPORTUNITIES TO IMPROVE HEALTH OUTCOMES AND HEALTH EQUITY AMONG LOW-INCOME POPULATIONS AND OTHER POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS (PART 3) REACHING OVER 300 NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM (NCCP) AND NATIONAL STATE TOBACCO CONTROL PROGRAM STAFF ACROSS 30 STATES. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (B). IN 2023, NOT ONLY DID SMHN EXPAND IT WEBINAR OFFERINGS, BUT ALSO EXPANDED COLLABORATION WITH OTHER PARTNER ORGANIZATION ON THE DEVELOPMENT OF WEBINAR CONTENT. IN FEBRUARY 2023, SMHN AND THE AMERICAN HEART ASSOCIATION (A CDC NATIONAL PARTNER), DEVELOPED THE 2-PART WEBINAR SERIES: FROM PREVENTION TO SCREENING AND SURVIVORSHIP: A ROADMAP FOR REDUCING SHARED RISKS ASSOCIATED WITH CANCERS AND CARDIOVASCULAR DISEASE AMONG LOW-INCOME POPULATIONS AND PATIENTS REACHING OVER 250 ATTENDEES. TRI-NETWORKS HPV LEARNING COLLABORATIVE EXPANSION: BUILDING ON LESSONS LEARNED AND ESTABLISHED INFRASTRUCTURE IN IMPLEMENTING THE TRI-NETWORKS HPV VACCINATION LEARNING COLLABORATIVE (GEOGRAPHIC HEALTH EQUITY ALLIANCE, NUESTRAS VOCES, AND SELFMADE HEALTH NETWORK), WITH THE LAUNCH OF COHORT 2 THE TRI-NETWORK WAS EXPANDED TO BECOME THE QUAD NETWORK WITH THE ADDITION OF THE ASIAN PACIFIC PARTNERS FOR EMPOWERMENT, ADVOCACY, AND LEADERSHIP (APPEAL). NETWORK. THE 15-MONTH COLLABORATIVE WAS DESIGNED TO PROVIDE TECHNICAL ASSISTANCE TO NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM (NCCCP) TO ENHANCE THEIR CAPACITY TO IMPLEMENT EVIDENCE-BASED STRATEGIES TO INCREASE HUMAN PAPILLOMAVIRUS (HPV) VACCINATION TO PREVENT CERVICAL CANCER AND INCREASE HPV VACCINATION RATES AMONG PERSONS WITH LOW SOCIO-ECONOMIC CHARACTERISTICS, GEOGRAPHICALLY DISPARATE AND/OR HISPANIC POPULATIONS. STATE NCCCP TEAMS FROM FIVE STATES (FLORIDA, KANSAS, RHODE ISLAND, WEST VIRGINIA, AND OKLAHOMA (CHEROKEE NATION) PARTICIPATED IN A SERIES OF VIRTUAL LEARNING SESSION AND ONE-ON-ONE TECHNICAL ASSISTANCE SESSIONS TO ENHANCE THEIR CAPACITY TO IMPLEMENT HPV RELATED POLICY, SYSTEM, AND ENVIRONMENTAL CHANGES. PAF'S COMMITMENT TO ADDRESSING HEALTH EQUITY AS A STRATEGIC IMPERATIVE POSITIONED PAF TO INTEGRATE A PHILOSOPHY OF ACHIEVING HEALTH EQUITY ACROSS ALL OPERATIONAL UNITS WITHIN PAF. CRITICAL TO THESE EFFORTS WAS THE LAUNCH OF PAF'S HEALTH EQUITY AFFINITY GROUP (HEAG) LAST FY. THE HEAG IS COMPRISED OF INDIVIDUALS ACROSS THE ORGANIZATION INCLUDING EXECUTIVE AND NON-EXECUTIVE STAFF DEDICATED TO UNVEILING THEIR PERSONAL EXPERIENCES WITH SOCIETAL "ISMS AND HEALTHCARE EXPERIENCES WHICH ERE USED TO INFORM PAF'S BLUEPRINT FOR ACHIEVING HEALTH EQUITY. IN FY2022/2023, AS PAF CONTINUES TO FOCUS ON OPPORTUNITIES TO EXPAND ITS COMMITMENT TO HEALTH EQUITY, BOLD INTERNAL CHANGES WERE MADE, INCLUDING CONTINUING AN EXTERNAL REVIEW OF PAF POLICIES AND PROCEDURES MANUAL RESULTING IN A REFINED, EQUITY FOCUSED EMPLOYEE HANDBOOK; THE DEVELOPMENT AND RELEASE OF PAF'S FIRST EQUITY FOCUSED VALUE STATEMENT AND INTEGRATED EQUITY INTO ITS ORGANIZATIONAL CORE VALUES FULL CEMENTING ITS COMMITMENT TO INTEGRATING PRINCIPLES THAT DRIVE EQUITY ACROSS EVERY SPHERE OR THE ORGANIZATION. PAF'S EQUITY VALUE STATEMENT: EQUITY MOVES US FORWARD, CALLING US TO ADDRESS THE LEGACY OF DEEPLY ESTABLISHED SOCIETAL INEQUITIES IN HEALTHCARE AND WORKPLACE SYSTEMS. WE IDENTIFY AND ELIMINATE BARRIERS TO EQUITABLE ACCESS IN THE HEALTHCARE SYSTEMS THAT OUR PATIENTS UTILIZE AND IN THE WORKPLACE OUR STAFF EXPERIENCE. WE COMMIT TO DIVERSITY AND INCLUSION STRATEGIES THAT ENABLE EQUITABLE OUTCOMES IN OUR LEADERSHIP, PRACTICES, POLICIES, OPERATIONS, AND ORGANIZATIONAL SYSTEMS BECAUSE DOING SO STRENGTHENS OUR ABILITY TO DELIVER ON OUR MISSION. O THE COMMUNITY ENGAGEMENT MODEL USED BY PAF CONTINUED TO ALLOW PAF TO REMAIN CONNECTED WITH STAKEHOLDERS SUPPORTING LIMITED RESOURCES INDIVIDUALS IN COMMUNITIES ACROSS THE COUNTRY. PAF IS COMMITTED TO REACHING RACIAL, ETHNIC, MINORITY AND OTHER MARGINALIZED POPULATIONS THROUGH ITS COMMUNITY OUTREACH AND ENGAGEMENT ACTIVITIES. DURING THIS REPORTING PERIOD, PAF'S HEI FORMED NEW PARTNERSHIPS TO SUPPORT THESE EFFORTS AT THE COMMUNITY AND NATIONAL LEVEL. PAF FORMED A PARTNERSHIP WITH COLORS OF CROHN'S AND CHRONIC ILLNESS (COCCI) TO REACH RACIAL, ETHNIC MINORITY POPULATIONS, AND YOUNG ADULTS LIVING WITH CROHN'S, IRRITABLE BOWEL DISEASE AND OTHER DIGESTIVE CONDITIONS. THIS NEW PARTNERSHIP BUILDS UPON AN EXPANSION OF PAF'S CASE MANAGEMENT SERVICE OFFERING, ADDRESSING SOCIAL AND FINANCIAL NEED CHALLENGES FOR PERSONS LIVING WITH CROHN'S DISEASE. THROUGH THIS PARTNERSHIP PAF AND COCCI HAVE WORKED COLLABORATIVELY TO INTRODUCE COCCI AMBASSADORS TO THE CASE MANAGEMENT SERVICES AVAILABLE TO PAF TO ASSIST INDIVIDUALS LIVING WITH CROHN'S AND OTHER INFLAMMATORY BOWEL CONDITIONS. COCCI AND PAF SHARED THE STAGE AT THE INAUGURAL HEALTH EQUITY IN INFLAMMATORY BOWEL DISEASE PATIENT SYMPOSIUM HELD IN ATLANTA, GEORGIA IN JULY 2022. PAF CONTINUES ITS EFFORTS TO IMPROVE HEALTHCARE ACCESS FOR BLACK WOMEN WHO ARE AT RISK FOR BREAST CANCER, WITH A SPECIFIC FOCUS IN FY2022/2023 ON TRIPLE NEGATIVE BREAST CANCER, THE MOST AGGRESSIVE TYPE OF BREAST CANCER IMPACTING BLACK WOMEN. PAF IS WORKING TO RECREATE THE "PATH TO PARTNERSHIP" IN HAMPTON ROADS WHICH PAF HAS SUCCESSFULLY IMPLEMENTED IN OTHER LOCATIONS TO BUILD AND SUSTAIN PRODUCTIVE RELATIONSHIPS WITH ORGANIZATIONAL PARTNERS WHO SHARE PAF'S COMMITMENT TO ACHIEVING HEALTH EQUITY. THIS COMMITMENT AND PAF'S SUCCESS IN REACHING BLACK WOMEN TO INCREASE THEIR KNOWLEDGE OF BREAST CANCER AND SUPPORTIVE RESOURCES WAS RECENTLY DEMONSTRATED IN IGNITE: A MOVEMENT TO RAISE AWARENESS ABOUT TRIPLE NEGATIVE BREAST CANCER AND THE IMPACT ON BLACK WOMEN, A SERIES OF ACTIVITIES INCLUDING AN INAUGURAL EDUCATION EVENT DESIGNED TO INCREASE KNOWLEDGE AMONG BW OF THEIR RISK FOR TNBC, THE IMPORTANCE OF EARLY DETECTION, EXPLAIN CLINICAL TRIALS PARTICIPATION AND SHARE AVAILABLE RESOURCES TO SUPPORT WOMEN ALONG THEIR CANCER JOURNEY. THE EVENT, WHICH ENGAGED 17 COMMUNITY-BASED ORGANIZATIONS AND 175 ATTENDEES, INCLUDED PANEL DISCUSSIONS (FEATURING TRIPLE NEGATIVE BREAST CANCER SURVIVORS), PLENARY SESSION FEATURING, RENOWNED ONCOLOGIST, DR. OLAPADE, BREAKOUT SESSIONS, VENDOR RESOURCES, DOOR PRIZES, AND A TAILORED SOCIAL MEDIA TOOLKIT WITH ENDURING, DOWNLOADABLE, SHAREABLE, AND CUSTOMIZABLE MATERIALS TO RAISE AWARENESS ABOUT TRIPLE NEGATIVE BREAST CANCER. THROUGH TWELVE (12), DIRECT AND/OR PARTNER FACILITATED VIRTUAL AND IN-PERSON OUTREACH EVENTS PAF HE REACHED MORE THAN 2300 INDIVIDUALS WITH INFORMATION ABOUT PAF'S SERVICES AND RESOURCES. PAF'S ENGAGEMENT INCLUDES: -MEMBER TO THE NATIONAL COMMISSION OF QUALITY ASSURANCE-PROVIDING EVIDENCE FOR HEALTH SYSTEM EQUITY EFFORTS STEERING COMMITTEE-DESIGNED TO ADDRESS THE ROLE OF COMMUNITY HEALTH WORKERS INTEGRATION WITHIN HEALTH SYSTEMS, A PROJECT SUPPORTED BY PCORI. -MEMBER OF THE DIGITAL HEALTHCARE EQUITY FRAMEWORK TECHNICAL EXPERT PANEL, CONVENED BY DRS. ELHAM HATEF AND MATT AUSTIN OF JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE WITH SUPPORT FROM AGENCY FOR HEALTHCARE RESEARCH AND QUALITY (AHRQ) TO DEVELOP A DIGITAL HEALTHCARE EQUITY FRAMEWORK TO BE USED BY HEALTH SYSTEMS. -PAF HEALTH EQUITY STAFF WAS A CONTRIBUTING AUTHOR THE MANUSCRIPT, FOOD INSECURITY AMONG PEOPLE WITH CANCER: MEETING NUTRITIONAL NEEDS AS AN ESSENTIAL COMPONENT OF CARE PUBLISHED SEPTEMBER 2022 IN THE JOURNAL OF THE NATIONAL CANCER INSTITUTE (SEPTEMBER 2022). THE MANUSCRIPT IS ONE OF THREE PAPERS OUTLINING A CALL TO ACTION TO ADDRESS AND IMPROVE HEALTH DISPARITIES FROM A SERIES OF WEBINARS SPONSORED BY THE NATIONAL CANCER POLICY FORUM OF THE NATIONAL ACADEMIES OF SCIENCES, ENGINEERING, AND MEDICINE. AUTHORS: MARGARET RABER, DRPH,1* ANN JACKSON, PT, DPT, MPH,2 KAREN BASEN-ENGQUIST, PHD, MPH,3 CATHY BRADLEY, PHD,4,5 SHONTA CHAMBERS, MSW,6 FRANCESCA M. GANY, MD, MS,7 CHANITA HUGHES HALBERT, PHD,8 STACY TESSLER LINDAU, MD, MA,9 RAFAEL PREZ-ESCAMILLA, PHD,10 DR. HONORIS CAUSA,11 HILARY SELIGMAN, MD, MAS,12. -THE EVP OF HEALTH EQUITY AND COMMUNITY ENGAGEMENT CO-CHAIRS THE RARE DISEASE DIVERSITY COALITION (RDDC)-PATIENT AND CAREGIVER WORKGROUP. THROUGH THIS WORKGROUP, SHE LED THE RDDC THROUGH THE DEVELOPMENT AND EXECUTION OF THE COALITION'S INAUGURAL PATIENT AND CAREGIVER NEEDS SURVEY. THE FINDING FROM THE SURVEY WILL BE USED TO GUIDE THE RDDC IN THE DEVELOPMENT OF TOOLS AND RESOURCES TO RESPOND TO GAPS IDENTIFIED BY PATIENT LIVING WITH RARE DISEASES AND THEIR CAREGIVERS, WITH AN INTENTIONAL FOCUSED ON PATIENTS REPRESENTING RACIAL, ETHNIC MINORITY POPULATIONS, PERSONS IN RURAL COMMUNITIES AND PERSONS WITH OTHER LIMITED ABILITIES. THE SURVEY WAS COMPLETED BY OVER 2,900 RESPONDENTS. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (C) PATIENT EDUCATION & EMPOWERMENT PAF EXTENDS ITS PATIENT SERVICES BY DEVELOPING AND DELIVERING PATIENT EDUCATION AND EMPOWERMENT TOOLS WITH A FOCUS ON PROVIDING PRACTICAL ADVICE AND GUIDANCE TO HEALTHCARE CONSUMERS. THESE TOOLS AIM TO ENHANCE INDIVIDUALS' DAY-TO-DAY EXPERIENCES WITH INSURANCE AND ENCOURAGE ACTIVE ENGAGEMENT WITHIN THE HEALTHCARE SYSTEM. PAF'S EDUCATIONAL ACTIVITIES ARE DESIGNED BASED ON THE CONVERSATIONS THAT OCCUR AMONG CASE MANAGERS, PATIENTS, AND CAREGIVERS, FOCUSING ON THOSE TOPICS FOR WHICH PATIENTS MOST FREQUENTLY SEEK HELP. ANNUALLY, PAF CREATES, MAINTAINS, AND DISSEMINATES A DIVERSE RANGE OF PATIENT EDUCATION MATERIALS AND ONLINE RESOURCES, AVAILABLE IN BOTH PRINTED AND ELECTRONIC FORMATS. PAF'S EDUCATIONAL PORTFOLIO ENCOMPASSES A WIDE ARRAY OF SUBJECTS, PRESENTED IN VARIOUS FORMATS TO CATER TO THE PREFERENCES AND NEEDS OF MULTIPLE AUDIENCES. THIS INCLUDES PATIENTS, CAREGIVERS, PROFESSIONALS, AS WELL AS THOSE DIRECTLY INTERACTING WITH THE FOUNDATION FOR ASSISTANCE AND THE GENERAL PUBLIC ACCESSING THE WEBSITE AND ENGAGING WITH PAF. PAF'S PATIENT EDUCATION RESOURCES ARE FREQUENTLY UTILIZED BY OTHER ORGANIZATIONS AND INSTITUTIONS, WHO SHARE THESE MATERIALS WITH THEIR OWN PATIENTS. THE FOUNDATION CURATES AN EXTENSIVE LIBRARY OF PAF-AUTHORED PATIENT EDUCATIONAL PUBLICATIONS, ON-DEMAND WEBINARS, INTERACTIVE TRAINING SERIES, AND RESOURCEFUL TOOLS. ALL RESOURCES ARE ACCESSIBLE AT NO COST TO PATIENTS. IN FY2022/2023, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM SUCCESSFULLY PUBLISHED 114 NEW, TRANSLATED, OR REVISED PUBLICATIONS, ALONG WITH AUDIO RECORDINGS AND EDUCATIONAL WEBINARS. ADDITIONALLY, PAF PROVIDED SUPPORT FOR FOUR MULTI-YEAR EDUCATIONAL PROJECTS: THE PATIENT ACTION COUNCIL PROJECT, HEALTH INSURANCE LITERACY PROJECT, MIGRAINE MATTERS, AND MATTERS OF THE HEART. FURTHERMORE, THE TEAM UNDERTOOK THREE STANDALONE PROJECTS: THE LIGHTHOUSE TRAINING SERIES, THE CREATION OF BIOMARKER TIP SHEETS AND AUDIO RECORDINGS, AND THE CREATION OF A NEW "GETTING THE MOST FROM YOUR MEDICARE BENEFITS" PUBLICATION. THE DEPARTMENT REBUILT AND REDESIGNED PAF'S EDUCATION RESOURCE LIBRARY AND NATIONAL FINANCIAL RESOURCE DIRECTORY, PAF'S MOST UTILIZED PATIENT RESOURCE, UNVEILED A NEW WEBSITE CALLED THE MEDICARE RESOURCE CENTER AND WAS HONORED WITH THE BRONZE MEDAL AWARD FOR THE EDUCATION RESOURCE LIBRARY IN THE WEB-BASED RESOURCES CATEGORY IN THE SPRING 2023 DIGITAL HEALTH AWARDS PROGRAM. PAF NATIONAL FINANCIAL RESOURCE DIRECTORY -USERS COMPLETED 59,072 ELECTRONIC SEARCHES FOR RESOURCES, A 77% INCREASE OVER THE PRIOR FY. -946,588 MATCHING RESOURCES WERE PROVIDED TO USERS, AVERAGING 16 CUSTOMIZED RESOURCES PER SEARCH -PAF EDUCATION STAFF REVIEWED MORE THAN 2,000 RESOURCES WHILE CREATING THE REVAMPED DIRECTORY. -USERS SEARCHED FOR FINANCIAL ASSISTANCE CATEGORIES MOST FREQUENTLY. THE TOP 8 CATEGORIES, RANKED BY SEARCH FREQUENCY, ARE: MEDICAL BILLS & GENERAL FINANCIAL HELP, FINANCIAL ASSISTANCE SUPPORT, HOUSING & LODGING, CHARITABLE COPAYMENT ASSISTANCE, TRANSPORTATION, UTILITIES, FOOD & NUTRITION, AND OTHER MEDICATION ASSISTANCE. NEW, TRANSLATED, AND REVISED PATIENT EDUCATION PUBLICATIONS, AUDIO RECORDINGS, AND EDUCATIONAL WEBINARS -EDUCATION RESOURCE LIBRARY | NEW PLATFORM AND REDESIGN | LAUNCHED SEPTEMBER 2, 2022 -THE SPOTLIGHT JULY 2022 PUBLICATION: DON'T LET YOUR BENEFITS (AND YOUR MONEY) GO TO WASTE -THE SPOTLIGHT AUGUST 2022 PUBLICATION: PAF LISTENS -THE SPOTLIGHT SEPTEMBER 2022 PUBLICATION: GETTING THE MOST FROM YOUR HEALTH INSURANCE -THE SPOTLIGHT OCTOBER 2022 PUBLICATION: MEDICARE OPEN ENROLLMENT -THE SPOTLIGHT NOVEMBER 2022 PUBLICATION: THE LIGHTHOUSE SERIES -THE SPOTLIGHT DECEMBER 2022 PUBLICATION: LOOKING BACK ON 2022 -THE SPOTLIGHT JANUARY 2023 PUBLICATION: NAVIGATING ASSISTANCE PROGRAMS -THE SPOTLIGHT FEBRUARY 2023 PUBLICATION: PAF'S GOT HEART -THE SPOTLIGHT MARCH 2023 PUBLICATION: IT'S NATIONAL SOCIAL WORK MONTH -THE SPOTLIGHT APRIL 2023 PUBLICATION: RECOGNIZING NATIONAL LIBRARY WEEK -THE SPOTLIGHT MAY 2023 PUBLICATION: PAF LAUNCHES NATIONAL FINANCIAL RESOURCE DIRECTORY AND MEDICARE RESOURCE CENTER -THE SPOTLIGHT, JUNE 2023 PUBLICATION: IT'S MEN'S HEALTH MONTH -NEGOTIATING MEDICAL COSTS | AUDIO RECORDING -MATTERS OF THE HEART FLYER | AUDIO RECORDING -EDUCATION RESOURCE LIBRARY (ERL) WELCOME VIDEO -NAVIGATING PATIENT EDUCATION RESOURCES TOUR WEBINAR -CHOOSING THE RIGHT HEALTH INSURANCE FOR YOU TIP SHEET PUBLICATION -CHOOSING THE RIGHT HEALTH INSURANCE FOR YOU WEBINAR -A GUIDE TO MANAGING THE COSTS OF YOUR MEDICAL CARE TIP SHEET PUBLICATION -A GUIDE TO MANAGING THE COSTS OF YOUR MEDICAL CARE WEBINAR -FEDERAL, GOVERNMENT AND INCOME BENEFITS AND PROTECTIONS TIP SHEET PUBLICATION -FEDERAL, GOVERNMENT AND INCOME BENEFITS AND PROTECTIONS WEBINAR -WORKPLACE BENEFITS TIP SHEET PUBLICATION -WORKPLACE BENEFITS WEBINAR -A GUIDE FOR PAYING FOR MEDICATIONS TIP SHEET PUBLICATION -A GUIDE FOR PAYING FOR MEDICATIONS WEBINAR -MEDICAL EXPENSES: HEALTHCARE SERVICES TIP SHEET PUBLICATION -MEDICAL EXPENSES: HEALTHCARE SERVICES WEBINAR -NAVIGATING ASSISTANCE PROGRAMS: FINDING HELP AUDIO RECORDING -NAVIGATING ASSISTANCE PROGRAMS: FINDING HELP PUBLICATION -NAVIGATING ASSISTANCE PROGRAMS: IMPROVING YOUR CHANCES FOR HELP AUDIO RECORDING -NAVIGATING ASSISTANCE PROGRAMS: IMPROVING YOUR CHANCES FOR HELP PUBLICATION -MEDICARE ELIGIBILITY AND ENROLLMENT TRAINING SERIES FLYER PUBLICATION -DISABILITY PROCESSES TRAINING SERIES FLYER PUBLICATION -HEALTH INSURANCE DENIALS AND APPEALS: DON'T TAKE NO FOR AN ANSWER- A PAF TRAINING SERIES FLYER PUBLICATION -HEALTH INSURANCE EDUCATION SERIES FLYER PUBLICATION -THE SPOTLIGHT OCTOBER 2021 PUBLICATION: TRYING TO SAVE MONEY? USE THESE METHODS TO MAKE THAT GOAL A REALITY! -THE SPOTLIGHT NOVEMBER 2021 PUBLICATION: OPEN ENROLLMENT -THE SPOTLIGHT-DECEMBER 2021 PUBLICATION: DENIED CLAIMS -THE SPOTLIGHT JANUARY 2022 PUBLICATION: DEDUCTIBLES -THE SPOTLIGHT-FEBRUARY 2022 PUBLICATION: CARDIOVASCULAR HEALTH -THE SPOTLIGHT-MARCH 2022 PUBLICATION: WOMEN'S HEALTH RESOURCES -SPOTLIGHT APRIL 2022 PUBLICATION: DISABILITY & THE IMPORTANCE OF UNDERSTANDING YOUR FINANCES -THE SPOTLIGHT-MAY 2022 PUBLICATION: THANKING OUR EMERGENCY SERVICES PRACTITIONERS AND NAVIGATING AMBULANCE BILLS -THE SPOTLIGHT: JUNE 2022 PUBLICATION: MIGRAINE MATTERS -SURPRISE MEDICAL BILLS: FREQUENTLY ASKED QUESTIONS PUBLICATION -HOW TO AVOID FINANCIAL STRESS TIP SHEET PUBLICATION -HOW DO I GET HEALTH INSURANCE TIP SHEET PUBLICATION -HOW HEALTH INSURANCE WORKS TIP SHEET PUBLICATION -YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION -WHAT IS HEALTH INSURANCE TIP SHEET PUBLICATION -10 TIPS TO GET THE MOST OUT OF YOUR INSURANCE TIP SHEET PUBLICATION -HEALTH INSURANCE NETWORKS INS AND OUTS TIP SHEET PUBLICATION -UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS PUBLICATION -YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION -HOW TO AVOID FINANCIAL STRESS TIP SHEET PUBLICATION (SPANISH) -HOW DO I GET HEALTH INSURANCE TIP SHEET PUBLICATION (SPANISH) -HOW HEALTH INSURANCE WORKS TIP SHEET PUBLICATION (SPANISH) -YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION (SPANISH) -WHAT IS HEALTH INSURANCE TIP SHEET PUBLICATION (SPANISH) -10 TIPS TO GET THE MOST OUT OF YOUR INSURANCE TIP SHEET PUBLICATION (SPANISH) -HEALTH INSURANCE NETWORKS INS AND OUTS TIP SHEET PUBLICATION (SPANISH) -UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS PUBLICATION (SPANISH) -YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION (SPANISH) -MARK YOUR CALENDAR OPEN ENROLLMENT IS COMING 2022 PUBLICATION -A USER'S GUIDE TO THE HEALTH INSURANCE MARKETPLACE 2022 PUBLICATION -CAG: FINDING AND SELECTING INSURANCE 2022 PUBLICATION -10 TIPS TO HELP YOU GET THE MOST OUT OF YOUR HEALTH INSURANCE PUBLICATION -10 TIPS TO HELP YOU GET THE MOST OUT OF YOUR HEALTH INSURANCE PUBLICATION (SPANISH) -YOUR BENEFITS EXPLAINED PUBLICATION -YOUR BENEFITS EXPLAINED PUBLICATION (SPANISH) -HEALTH INSURANCE NETWORKS THE INS AND OUTS PUBLICATION -HEALTH INSURANCE NETWORKS THE INS AND OUTS PUBLICATION (SPANISH) -UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS PUBLICATION -UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS PUBLICATION (SPANISH) -HOW DO I GET HEALTH INSURANCE PUBLICATION -HOW DO I GET HEALTH INSURANCE PUBLICATION (SPANISH) -HOW HEALTH INSURANCE WORKS PUBLICATION -HOW HEALTH INSURANCE WORKS PUBLICATION (SPANISH) -HOW TO AVOID FINANCIAL STRESS PUBLICATION -HOW TO AVOID FINANCIAL STRESS PUBLICATION (SPANISH) |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (D) -WHAT IS HEALTH INSURANCE? PUBLICATION -WHAT IS HEALTH INSURANCE? PUBLICATION (SPANISH) -MATTERS OF THE HEART FLYER PUBLICATION -MATTERS OF THE HEART FLYER PUBLICATION (SPANISH) -MOH HABIT TRACKER PUBLICATION -MOH MAINTAINING EFFECTIVE COMMUNICATION WITH YOUR PROVIDER PUBLICATION -ALLOWABLE CHARGES AND WHAT THEY MEAN FOR YOUR WALLET PUBLICATION -INFLATION REDUCTION ACT TIP SHEET PUBLICATION -INFLATION REDUCTION ACT TIMELINE PUBLICATION -MEDICARE GLOSSARY OF KEY TERMS PUBLICATION -COMPARING MEDIGAP PLANS 2023 PUBLICATION -MEDICARE RESOURCE CENTER WEBSITE -CHANGES TO MEDICARE: WHAT SENIORS CAN EXPECT FROM THE INFLATION REDUCTION ACT PUBLICATION -NATIONAL FINANCIAL RESOURCE DIRECTORY | REBUILT AND REDESIGNED | MAY 2023 -NEW NATIONAL FINANCIAL RESOURCE DIRECTORY TUTORIAL WEBINAR -ASSISTANCE CATEGORIES IN THE NATIONAL FINANCIAL RESOURCE DIRECTORY PUBLICATION -NATIONAL FINANCIAL RESOURCE DIRECTORY MEDICAL DIAGNOSIS CATEGORIES & EXAMPLES PUBLICATION -NAVIGATING ASSISTANCE PROGRAMS: FINDING HELP PUBLICATION -NAVIGATING ASSISTANCE PROGRAMS: IMPROVING YOUR CHANCES FOR HELP PUBLICATION -HOW TO SAVE MONEY ON MEDICAL BILLS PUBLICATION -TELEHEALTH TIP SHEET PUBLICATION -REDUCING HEALTH INSURANCE STRESS AS A CAREGIVER PUBLICATION -UNDERSTANDING HOW SSI AND SSDI CAN HELP PATIENTS PUBLICATION (SPANISH) -UNDERSTANDING HOW SSI AND SSDI CAN HELP PATIENTS PUBLICATION -MIGRAINE EMOTIONAL SUPPORT RESOURCES PUBLICATION -MAINTAINING ELIGIBILITY FOR INSURANCE PUBLICATION (SPANISH) -MAINTAINING ELIGIBILITY FOR INSURANCE PUBLICATION -THINK TWICE BEFORE BUYING A SHORT-TERM HEALTH PLAN PUBLICATION -SURPRISE MEDICAL BILLS: FREQUENTLY ASKED QUESTIONS PUBLICATION -PAYING ATTENTION TO MEDICAL DOCUMENTS CAN SAVE YOU MONEY PUBLICATION -FEDERAL, GOVERNMENTAL AND INCOME BENEFITS AND PROTECTIONS TIP SHEET PUBLICATION -ACCESSING CARE WITHOUT INSURANCE MIGRAINE PUBLICATION -NATIONAL FINANCIAL RESOURCE DIRECTORY FLYER PUBLICATION -NATIONAL FINANCIAL RESOURCE DIRECTORY FLYER-PUBLICATION (SPANISH) DURING FY2022/2023, MEMBERS OF THE FOUNDATION'S STAFF ALSO CONDUCTED, PARTICIPATED IN, AND HOSTED EDUCATIONAL OUTREACH AT THE LOCAL, REGIONAL, AND NATIONAL LEVELS WITH THE GOAL OF EDUCATING THE PUBLIC, NONPROFIT ORGANIZATIONS, AND MEMBERS OF THE HEALTHCARE COMMUNITY (WHO SUPPORT PATIENTS) ABOUT THE SERVICES AND EDUCATIONAL MATERIALS OFFERED BY THE FOUNDATION AND THE CHALLENGES FACING PATIENTS AS THEY NAVIGATE THEIR TREATMENT JOURNEY. THIS OUTREACH WAS, IN CASES, TARGETED TO A POPULATION OUTLINED IN HEALTHCARE ACCESS AND DISEASE OUTCOMES DATA AS AFFECTED BY SOCIAL DETERMINANTS OF HEALTH AND UNDERSERVED COMMUNITIES. WHILE PAF IS STILL PARTICIPATING IN VIRTUAL EVENTS, ATTENDANCE AT IN-PERSON EVENTS HAS INCREASED SIGNIFICANTLY. PAF CONTINUES TO SUPPORT VIRTUAL ENGAGEMENTS TO REACH A BROADER AUDIENCE THROUGH VARIOUS SOURCES AND INCREASE PUBLIC AWARENESS OF PAF RESOURCES TO PATIENTS AND FAMILIES. IN FY2022/2023, ATTENDED 135 OUTREACH EVENTS AND DISTRIBUTED 3972, AN INCREASE OF 80%, EDUCATIONAL PUBLICATIONS THROUGH THESE EVENTS. HEALTH SERVICES RESEARCH THE AIM OF THE HEALTH SERVICES RESEARCH PORTFOLIO IS TO IMPROVE THE PATIENT EXPERIENCE BY STUDYING THE PATIENT JOURNEY, UNMET NEEDS, AND THE IMPACT THAT SYSTEMS AND SOCIAL SUPPORT INTERVENTIONS HAVE ON OVERALL PATIENT HEALTH AND WELLBEING. MAJOR RESEARCH, EVALUATION, AND PATIENT EXPERIENCE/ENGAGEMENT INITIATIVES IN 2022-2023 INCLUDED FOUR EXISTING PARTNERSHIPS ON RESEARCH INTERVENTION PROJECTS WITH ACADEMIC AND PARTNERS INCLUDING: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, EMORY UNIVERSITY, FRED HUTCHINSON CANCER RESEARCH CENTER AS WELL AS A NEW PROJECT WITH UNIVERSITY OF CALIFORNIA IRVINE THAT LAUNCHED IN AUGUST 2023 (2). THESE PROJECTS UTILIZE CASE MANAGEMENT AS AN INTERVENTION TO ADDRESS FINANCIAL AND SOCIAL NEED. IN ADDITION TO OUR INTERVENTION WORK, WE PARTNERED WITH FOUR SCIENTIFIC AND/OR ACADEMIC INSTITUTIONS TO DEVELOP AND ANALYZE SURVEY DATA: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, UNIVERSITY OF ALABAMA BIRMINGHAM, MD ANDERSON, AND ECOG-ACRIN CANCER RESEARCH GROUP. TWO NEW PARTNERSHIPS WITH THE COLUMBIA UNIVERSITY SCHOOL OF NURSING AND UNIVERSITY OF TENNESSEE WILL LAUNCH IN MID TO LATE 2023. THROUGH OUR PATIENT INSIGHT INSTITUTE WE HAVE EXPANDED OUR PATIENT ENGAGEMENT PORTFOLIO TO INCLUDE COLLABORATIONS WITH NORC AT THE UNIVERSITY OF CHICAGO, ACADEMY HEALTH, SIREN (UNIVERSITY OF CALIFORNIA SAN FRANCISCO), UNIVERSITY OF ILLINOIS, PHARMACY QUALITY ALLIANCE, AMERICA'S HEALTH INSURANCE PLANS, AND ARIADNE LABS (HARVARD UNIVERSITY). NINE ARTICLES WERE PUBLISHED IN PEER REVIEWED JOURNALS AND TEN ABSTRACTS PRESENTED AT NATIONAL MEETINGS. PAF'S RESEARCH EVALUATION AND PATIENT EXPERIENCE TEAM WAS ALSO INVOLVED IN A PATIENT-CENTERED PROJECTS TO SUPPORT THE FIELD IN INTEGRATING PATIENT VOICES INTO HEALTH POLICY, CARE, AND RESEARCH INITIATIVES. A KEY INTERVENTIONAL PROJECT PILOTED EMBEDDING SDOH SCREENING AND PAF AS INTERVENTION INTO CLINICAL WORKFLOW. THIS PROJECT'S KEY PARTNERS WERE UIC AND MILES SQUARE. PAF ALSO SERVES/D AS THOUGHT LEADERS AND CONTENT EXPERTS, AS WELL AS KEY PARTNERS IN FACILITATION OF OUTREACH AND COLLECTION OF THE PATIENT EXPERIENCE ON A NUMBER OF TOPICS INCLUDING A PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) FUNDED PROJECT "COVID-19 LEARNING COMMUNITY, AND AN AHIP FUNDED PROJECT "FACTORS IMPACTING EQUITABLE CARE." THROUGH THE PATIENT INSIGHT INSTITUTE, WE CONTINUE TO BUILD PARTNERSHIPS AND THESE RELATIONSHIPS WERE REFLECTED THROUGH PARTNERED PROJECTS WITH NORC AT THE UNIVERSITY OF CHICAGO AND THE UNIVERSITY OF CALIFORNIA AT SAN FRANCISCO (SIREN: SOCIAL INTERVENTIONS RESEARCH AND EVALUATION NETWORK). COLLECTIVELY, THIS BODY OF WORK SERVES TO FURTHER PAF'S MISSION BY ADVANCING THE FIELD'S KNOWLEDGE OF THE PATIENT EXPERIENCE AROUND ACCESS AND AFFORDABILITY, THUS PROVIDING INSIGHT INTO HOW TO BEST MEET PATIENTS' FINANCIAL AND SOCIAL NEEDS IN A WAY THAT IS PATIENT-CENTERED AND ADVANCES THE TENANTS OF HEALTH EQUITY. SCHOLARSHIP FOR SURVIVORS PROGRAM IT IS NOT UNCOMMON FOR FOUNDATION STAFF TO INTERACT WITH PATIENTS AND FAMILIES WHO ARE STRUGGLING TO AFFORD POST-SECONDARY EDUCATION DUE TO THE FINANCIAL BURDEN ASSOCIATED WITH A CHRONIC ILLNESS OR LIFE-THREATENING DISEASE. IN 2000, PAF ESTABLISHED THE SCHOLARSHIP FOR SURVIVORS PROGRAM TO HONOR THESE INDIVIDUALS BY OFFERING EDUCATIONAL SCHOLARSHIPS TO STUDENTS WHO HAVE SUFFERED (OR ARE SUFFERING) FROM CANCER OR A CHRONIC ILLNESS. THESE STUDENTS HAVE, DESPITE THEIR DIAGNOSIS, EXCELLED ACADEMICALLY, SERVED THE COMMUNITY, AND DESIRE TO PURSUE A SECONDARY EDUCATION. PAF'S SIGNATURE FUNDRAISING EVENT FOR THE SCHOLARSHIP PROGRAM, A PROMISE OF HOPE AFFAIR, WAS HELD ON SEPTEMBER 10, 2022. THROUGH THIS EVENT, GENEROUS DONORS TO PAF HELPED SUPPORT 40 SCHOLARSHIPS THROUGH THE SCHOLARSHIP FOR SURVIVORS PROGRAM FOR THE 2023-2024 ACADEMIC YEAR. TO DATE, THE FOUNDATION HAS AWARDED 195 SCHOLARSHIPS TOTALING OVER ONE MILLION DOLLARS. PUBLIC SUPPORT PERCENTAGE THE FOUNDATION'S CUMULATIVE PUBLIC SUPPORT PERCENTAGE THROUGH JUNE 30, 2023 IS 19.75%. THIS IS ABOVE THE MINIMUM AMOUNT OF 10% AT WHICH FACTS AND CIRCUMSTANCES WILL BE CONSIDERED BY THE IRS IN DETERMINING THE FOUNDATION'S ONGOING STATUS AS A PUBLIC CHARITY. PAF'S ONGOING OPERATIONS, GOVERNING STRUCTURE AND BROAD FUNDRAISING ACTIVITIES REFLECT THE HALLMARK STANDARDS OF A PUBLIC CHARITY AND AS SUCH, SUPPORT ITS ONGOING CLASSIFICATION AS SUCH. THESE FACTS AND CIRCUMSTANCES INCLUDE THE FOLLOWING: 1. THE FOUNDATION MAINTAINS ITS INDEPENDENCE FROM ITS DONORS BOTH OPERATIONALLY AND FROM A GOVERNANCE PERSPECTIVE. DONORS TO PAF DO NOT HAVE INFLUENCE OR CONTROL OVER THE FOUNDATION, ITS OPERATIONS, OR ITS PROGRAMMING. IT IS IMPORTANT TO NOTE THAT, BY ITS' VERY NATURE, THE CO-PAY RELIEF PROGRAM, TO WHICH CHARITABLE DONATIONS ARE MADE THAT EFFECT PAF'S PUBLIC SUPPORT PERCENTAGE THE GREATEST, IS REQUIRED TO BE INDEPENDENTLY OPERATED, WITHOUT THE INFLUENCE OR CONTROL OF ITS DONORS PER GUIDANCE PROVIDED BY THE OFFICE OF INSPECTOR GENERAL (OIG) IN ITS OPINION 04-15. PAF HAS A DEEP COMMITMENT TO COMPLIANCE WITH ITS OIG OPINION, AS IS EVIDENCED BY ITS ORGANIZATIONAL COMPLIANCE PROGRAM AND ONGOING OUTCOMES OF BOTH INTERNAL AND EXTERNAL ANNUAL REVIEWS AND AUDITS. 2. PAF SEEKS, AND SUCCESSFULLY SECURES, FUNDING FOR ITS PROGRAMS FROM A MULTITUDE OF SOURCES INCLUDING GOVERNMENTAL AGENCIES, OTHER PUBLIC CHARITIES, CORPORATIONS AND FROM THE GENERAL PUBLIC. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (E) 3. PAF'S EXECUTIVE BOARD OF DIRECTORS IS COMPRISED OF MEMBERS WITH DIVERSE PROFESSIONAL BACKGROUNDS, REPRESENTING THE INTERESTS OF THE CHRONICALLY AND CRITICALLY ILL SEGMENT OF THE GENERAL PUBLIC SERVED BY PAF. THE MEMBERS OF THE PAF BOARD OF DIRECTORS HAVE EXPERTISE IN THE FIELDS OF HEALTHCARE ADMINISTRATION, CLINICAL PRACTICE AND RESEARCH, HIGHER EDUCATION, DIRECT PATIENT CARE, NON-PROFIT MANAGEMENT, PATIENT ADVOCACY, HEALTH INSURANCE, TECHNOLOGY AND LAW; WHEN COMBINED, THE MEMBERS CLEARLY REPRESENT A BROAD CROSS SECTION OF THE VIEWS AND INTERESTS OF THE COMMUNITY/PUBLIC. 4. ALL VOTING MEMBERS OF THE PAF BOARD OF DIRECTORS ARE INDEPENDENT PER THE DIRECTOR'S INDEPENDENCE TEST, BASED ON THE IRS TEST FOR INDEPENDENCE THAT IS USED TO DETERMINE THE INDEPENDENCE OF EACH MEMBER OF THE BOARD OF A CHARITABLE ORGANIZATION. PER POLICY, THE FOUNDATION'S BOARD DOES NOT INCLUDE ANY EMPLOYEE OR BOARD MEMBERS OF A DONOR ORGANIZATION, THUS, ELIMINATING THE INFLUENCE OF A DONOR FROM THE GOVERNING BODY 5. THE FOUNDATION'S SUPPORT AND SERVICES BROADLY BENEFIT THE GENERAL PUBLIC, SPECIFICALLY THOSE DIAGNOSED AND LIVING WITH CHRONIC AND CRITICAL DISEASES, THEIR FAMILIES AND CARE TEAMS. PAF HAS A LONGSTANDING, DEMONSTRATED HISTORY OF PROVIDING ROBUST CASE MANAGEMENT SERVICES, PATIENT/PUBLIC EDUCATION, AND THE PROVISION OF FINANCIAL SUPPORT FOR NON-MEDICAL COST OF LIVING EXPENSES AND PHARMACEUTICAL CO-PAYMENTS AND MEDICAL INSURANCE PREMIUMS THROUGH ITS FINANCIAL AID FUNDS AND CPR PROGRAMS, RESPECTIVELY; CONTINUOUSLY FUNDRAISING TO AN EVER EXPANDING AND CHANGING DONOR BASE TO FUND THE PATIENT PROGRAMMING EACH YEAR. FACTS AND CIRCUMSTANCES SUPPORTING QUALIFICATION AS A PUBLICLY SUPPORTED ORGANIZATION 1. ATTRACTION OF PUBLIC SUPPORT & INDEPENDENCE PAF IS ORGANIZED AND OPERATED IN A MANNER THAT FACILITATES AND ATTRACTS NEW AND ADDITIONAL PUBLIC AND GOVERNMENTAL SUPPORT, AS WELL AS SUPPORT FROM OTHER PUBLIC CHARITIES AND CORPORATIONS ON A CONTINUOUS BASIS. THIS IS EVIDENCED BY THE PUBLIC SUPPORT PERCENTAGE THAT PAF HAS MAINTAINED OVER THE COURSE OF ITS HISTORY AND THE NUMBER AND DIVERSITY OF DONORS TO THE FOUNDATION. PAF HAS A POLICY OF SEEKING AND SECURING CHARITABLE DONATIONS FROM A MULTITUDE OF SOURCES FOR ALL ITS PROGRAMS, INCLUDING CASE MANAGEMENT, PATIENT EDUCATION PROGRAMS, HEALTH EQUITY INITIATIVES, PATIENT EXPERIENCE AND HEALTH SERVICES RESEARCH, AND FINANCIAL ASSISTANCE PROGRAMS INCLUDING ITS FINANCIAL AID FUNDS (FAF) AND ITS CO-PAY RELIEF (CPR) PROGRAM AS OUTLINED IN OIG ADVISORY OPINION 04-15. PAF HAS BEEN SUCCESSFUL IN SECURING BROAD SUPPORT FROM A MYRIAD OF SOURCES, EXPANDING ITS BASE OF SUPPORT EACH YEAR. PAF DOES NOT HAVE A PERPETUAL SOURCE OF REVENUE SUCH AS PERMANENT ENDOWMENT FROM WHICH INVESTMENT INCOME MIGHT SUPPORT THE ORGANIZATION, AS IS THE CASE WITH MOST PRIVATE FOUNDATIONS, RATHER, THE FOUNDATION'S LEADERSHIP, AND THOSE STAFF CHARGED WITH FUNDRAISING ACTIVITIES, ARE RESPONSIBLE FOR SECURING SUPPORT SUFFICIENT ENOUGH TO SUPPORT THE FOUNDATION'S PROGRAM SERVICES FOR THE GENERAL PUBLIC EACH YEAR. THE FOUNDATION EMPLOYS A DEDICATED PROGRAM DEVELOPMENT STAFF OF SEVEN (7) WHOM, IN PARTNERSHIP WITH THE CEO, MEMBERS OF THE EXECUTIVE TEAM AND BOARD OF DIRECTORS, IS RESPONSIBLE FOR DEVELOPING AND EXECUTING MULTIFACETED FUNDRAISING PLANS ALIGNED WITH THE MISSION OF THE FOUNDATION OF PROVIDING SUSTAINED CASE MANAGEMENT, FINANCIAL SUPPORT AND EDUCATION TO THE UN- AND UNDER- INSURED, FINANCIALLY DISADVANTAGED POPULATION IN OUR NATION. THE PROGRAM DEVELOPMENT TEAM WORKS TO IDENTIFY AND RESPOND TO FUNDING OPPORTUNITIES FOR THE FOUNDATION FROM ALL GOVERNMENT, BUSINESS, AND NON-PROFIT SECTORS. IN FY2022/2023, THE PROGRAM DEVELOPMENT STAFF SUBMITTED 1124 GRANTS AND FACILITATED FUNDRAISING CAMPAIGNS TO THE PUBLIC. OVER THE LAST FIVE YEARS, PAF'S MISSION HAS BEEN SUPPORTED BY 2201 DONORS ACROSS ALL SOURCES OF CHARITABLE DONATIONS. IN FY2022/2023, PAF RECEIVED CONTRIBUTIONS FROM 524 DONORS INCLUDING SUPPORT FROM INDIVIDUALS, CORPORATIONS AND CORPORATE FOUNDATIONS, GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. FURTHER IN 2022/2023, PAF RECEIVED DONATIONS OF SUPPORT FROM FORTY-ONE (41) NON-PROFIT ORGANIZATIONS, ALL 501C3 PUBLIC CHARITIES AND PRIVATE FOUNDATIONS, OF WHICH NINE (9) WERE NEW DONORS INCLUDING ACROMEGALY COMMUNITY, KAPLAN FAMILY FOUNDATION, LANGLEY FOR FAMILIES FOUNDATION, MIA'S MIRACLES, S. SYDNEY DEYOUNG FOUNDATION, SHARSHERET, THE 6:52 PROJECT FOUNDATION, THE ARDS ALLIANCE, AND YOUNG SURVIVAL COALITION. THESE ORGANIZATIONS FUNDED GRANTS TO PAF IN SUPPORT OF ITS CASE MANAGEMENT, PATIENT EDUCATION, HEALTH SERVICES RESEARCH, FINANCIAL AID FUNDS AND CO-PAY RELIEF PROGRAM. IN FY2022/2023, PAF ADDED, EXPANDED, AND MAINTAINED SEVERAL KEY PATIENT PROGRAMS WITH THE SUPPORT OF OTHER NON-PROFIT ORGANIZATIONS. PAF EXPANDED FUNDING FOR THE FINANCIAL NAVIGATION IN PARTNERSHIP WITH PAF FOR THE PANCREATIC CANCER ACTION NETWORK (PANCAN) AND CONTINUED THE ESOPHAGEAL CANCER CARELINE WITH SUPPORT FROM THE ESOPHAGEAL CANCER AWARENESS ASSOCIATION. PAF ALSO ENTERED INTO PARTNERSHIP WITH SHARSHERET TO PROVIDE CASE MANAGEMENT SERVICES TO PATIENTS WITH BREAST AND OVARIAN CANCER. ZERO: THE END OF PROSTATE CANCER CONTINUED ITS SUPPORT OF THE ZERO:360 CASE MANAGEMENT PROGRAM FOR PROSTATE CANCER PATIENTS. THE ALS ASSOCIATION CONTINUED TO PARTNER WITH PAF, PROVIDING PATIENT EDUCATION ON INSURANCE BENEFITS AND PROVIDING CASE MANAGEMENT SERVICES. AS WELL, PAF CONTINUED ITS PARTNERSHIPS WITH THE AMERICAN CANCER SOCIETY, A PARTNERSHIP THAT BEGAN IN 2013, AND THE DONNA FOUNDATION, PROVIDING CASE MANAGEMENT AND FINANCIAL AID PROGRAMS SERVING BREAST CANCER PATIENTS. THE WILDFLOWER FOUNDATION PROVIDED SUPPORT FOR PAF'S CASE MANAGEMENT SERVICES FOR THE ELEVENTH CONSECUTIVE YEAR. PAF ALSO RECEIVED FUNDING FROM SENTARA CARES, A PROGRAM WITH SENTARA HOSPITAL SYSTEMS TO PROVIDE GENERAL CASE MANAGEMENT SUPPORT. PAF LAUNCHED THREE NEW FINANCIAL AID FUNDS, ONE TO ASSIST PEDIATRIC PATIENTS WITH BRAIN CANCER, MIA' MIRACLES, ONE TO ASSIST ARDS PATIENTS, THE SUMITA DIXIT RECOVERY FUND WITH THE ARDS ALLIANCE AND ONE THAT SUPPORTS THE TRAVEL EXPENSES OF PROSTATE CANCER PATIENTS LIVING IN OKLAHOMA. THE BEGIN AGAIN FOUNDATION CONTINUED SUPPORTING PATIENTS WITH SEPSIS, ARDS, AND TOXIC SHOCK THROUGH THE LEISHLINE FINANCIAL AID FUND AS WELL AS PROVIDING CONTINUED SUPPORT OF THE ANGEL FUND, HELPING WITH BURIAL/FUNERAL EXPENSES. THE NATIONAL OVARIAN CANCER COALITION (NOCC) CONTINUED TO SUPPORT THE TWO FAF'S FOR OVARIAN CANCER PATIENTS. PAF ALSO SECURED FUNDING FOR ITS PATIENT EDUCATIONAL PROGRAM, "THE LIGHTHOUSE SERIES" FROM THE TRUIST FOUNDATION TO DEVELOP EDUCATIONAL MATERIALS ON FINANCIAL EDUCATION. PAF MAINTAINS, ON ITS PUBLIC WEBSITES, (WWW.PATIENTADVOCATE.ORG AND WWW.COPAYS.ORG ), DONATION PAGES THAT THE GENERAL PUBLIC USES TO MAKE DONATIONS TO THE FOUNDATION. PAF DEVELOPMENT TEAM DESIGNED AND LAUNCHED DEDICATED CAMPAIGNS WITHIN DISEASE COMMUNITIES: ONCOLOGY, NEUROLOGY, CARDIOLOGY, VIROLOGY, IMMUNOLOGY, PULMONOLOGY, AND RARE DISEASE. IN FY2022/2023, PAF DEVELOPMENT TEAM CONTINUED THE "TRANSFORM A PATIENT'S LIFE", A DIY FUNDRAISING PLATFORM FOR ONGOING, ONLINE PEER-TO-PEER FUNDRAISING CAMPAIGNS AS WELL AS AMAZON SMILES AND KROGER COMMUNITY PROGRAMS DONATION LISTS. FURTHER, PAF MAINTAINS CLEAR INDEPENDENCE OF OPERATIONS OF ITS PROGRAMS SO TO ENSURE THEY ARE DESIGNED AND OPERATED IN A MANNER THAT ADDRESSES THE NEEDS OF CHRONICALLY AND CRITICALLY ILL PATIENTS IN THE GENERAL POPULATION AS SUPPORTED BY PAF PATIENT NEEDS DATA. PAF PROACTIVELY, INDEPENDENTLY, AND WITHOUT DONOR INFLUENCE OR CONTROL, IDENTIFIES THE NEED FOR, AND DEFINES AND ESTABLISHES THE OPERATIONAL PARAMETERS FOR, EACH OF ITS DISEASE SPECIFIC FUNDS IN THE CPR PROGRAM CONSISTENT WITH ITS OIG ADVISORY OPINION, 04-15, AS MODIFIED AND ALL PUBLISHED OIG GUIDANCE THAT IS APPLICABLE TO CHARITABLE PATIENT ASSISTANCE PROGRAMS. THE PROCESS UTILIZED IS DIRECTED AND COMPLETED BY PAF AND INCLUDES A REVIEW AND APPROVAL BY THE CHAIR OF THE SCIENTIFIC COMMITTEE OF THE PAF BOARD OF DIRECTORS, PAF COMPLIANCE COUNSEL AND THE GOVERNANCE COMMITTEE OF THE PAF BOARD OF DIRECTORS. PAF HAS FULLY DEFINED OVER 110 DISEASE FUNDS AS OF THE END OF FY2022/2023. PAF ALSO IDENTIFIES THE NEED FOR, DEFINES AND ESTABLISHES THE OPERATIONAL PARAMETERS FOR ITS CASE MANAGEMENT PROGRAMMING, SMALL GRANT PROGRAMS AND PUBLIC/PATIENT EDUCATION PROGRAMS, FREE FROM DONOR INFLUENCE OR CONTROL. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (F) THE PAF BOARD OF DIRECTORS ADOPTED THE CHARITABLE PATIENT ASSISTANCE PROGRAM (CPAP) CODE OF ETHICS THAT WAS DRAFTED IN 2014-2015 BY A COLLECTION OF ORGANIZATIONS WHO ALL PROVIDE CHARITABLE PATIENT ASSISTANCE SIMILAR TO THAT PROVIDED BY PAF THROUGH ITS CO-PAY RELIEF PROGRAM. THIS INITIATIVE WAS LED BY PAF AND MANAGED BY REGULATORY COUNSEL FROM WASHINGTON, DC. PAF HAS A GOVERNANCE COMMITTEE OF THE BOARD OF DIRECTORS. ADOPTION OF THIS VOLUNTARY CODE FURTHER DEMONSTRATES PAF'S COMMITMENT TO COMPLIANCE AND INDEPENDENCE FROM DONOR INFLUENCE. PAF ENGAGES THE SERVICES OF ARENTFOX SCHIFF, LLP, WASHINGTON, DC, AS ITS REGULATORY COUNSEL. ARENTFOX ARE EXPERTS IN REGULATORY COMPLIANCE, SPECIALIZING IN COMPLIANCE PROGRAMS RELATIVE TO PATIENT ASSISTANCE PROGRAMS AND LEAD THE DEVELOPMENT, IMPLEMENTATION, AND ONGOING MANAGEMENT OF PAF'S ORGANIZATIONAL COMPLIANCE PROGRAM, AS WELL AS SERVE AS ITS COMPLIANCE COUNSEL. ALL PROGRAMS OPERATED BY PAF, INCLUDING CPR, ARE SUBJECT TO THE PARAMETERS OF THE COMPLIANCE PROGRAM AS DEFINED IN THE COMPLIANCE CHARTER. THE PROGRAM IS DESIGNED TO ASSIST PAF IN PREVENTING, DETECTING, AND RESPONDING TO ILLEGAL, IMPROPER, AND UNETHICAL CONDUCT, SERVING AS A PROCEDURAL FRAMEWORK FOR ENHANCING AND MONITORING COMPLIANCE WITH APPLICABLE LAW, REGULATION, THE PAF CODE OF CONDUCT AND PAF'S POLICIES AND PROCEDURES. THE COMPLIANCE PROGRAM IS BASED ON THE SEVEN ELEMENTS OF AN EFFECTIVE COMPLIANCE PROGRAM SET FORTH IN THE FEDERAL SENTENCING GUIDELINES MANUAL AND APPLICABLE DEPARTMENT OF HEALTH AND HUMAN SERVICES OFFICE OF INSPECTOR GENERAL ("OIG") GUIDANCE. KEY PROGRAM GOVERNANCE POLICIES AND PROCEDURES INCLUDE: 1. COMPLIANCE PROGRAM OVERVIEW 2. GOVERNANCE AND COMPLIANCE COMMITTEE CHARTER 3. COMPLIANCE COMMITTEE MEMBERSHIP CRITERIA 4. PAF ORGANIZATIONAL CODE OF CONDUCT 5. CONFLICTS OF INTEREST POLICY AND PROCEDURE FOR OFFICERS, EMPLOYEES, SUBCONTRACTORS AND AGENTS 6. POLICY ON DEVELOPMENT OF ANNUAL AUDITING AND MONITORING WORK PLAN 7. COMPLIANCE REPORTING AND NON-RETALIATION POLICY AND PROCEDURE 8. BACKGROUND CHECK POLICY 9. STAFF AND BOARD OF DIRECTORS COMPLIANCE TRAINING 10. ESTABLISHMENT OF AN ANONYMOUS HOTLINE FOR EMPLOYEES TO REPORT CONCERNS ANNUAL COMPLIANCE TRAINING WAS DELIVERED TO THE PAF EXECUTIVE BOARD OF DIRECTORS IN NOVEMBER 2022 AND THE ENTIRE PAF STAFF RECEIVED THE ANNUAL TRAINING IN AUGUST AND SEPTEMBER 2022. THIS TRAINING INCLUDED A CLEAR OVERVIEW OF THE ANTI-KICK BACK STATUTE (AKS) AND CIVIL MONETARY PENALTIES LAW AND THEIR APPLICABILITY TO PAF AND THE CPR PROGRAM. ALL NEW HIRES, INCLUDING TEMPORARY STAFF, RECEIVE TRAINING DURING THE FIRST TWO DAYS OF EMPLOYMENT. FINALLY, TO ENSURE COMPLIANT COMMUNICATIONS WITH DONORS AND CLEARLY ARTICULATE PAF'S INDEPENDENCE OF OPERATIONS, PAF, IN COLLABORATION WITH THE PAF COMPLIANCE COUNSEL, MAINTAINS THE DONOR COMMUNICATION, FUND DEVELOPMENT AND MANAGEMENT STANDARD OPERATING PROCEDURES AND ACCOMPANYING TEMPLATES. THIS MANUAL, AND ASSOCIATED ANNUAL MANDATORY TRAINING, DELIVERED IN DECEMBER 2022, PROVIDES GUIDELINES AND PROCEDURES RELATIVE TO KEY AREAS OF DONOR INTERACTION & OPERATIONAL DESIGN DECISIONS. 2. SOURCES OF SUPPORT PAF HAS BEEN SUCCESSFUL IN PROCURING SUBSTANTIAL CHARITABLE CONTRIBUTIONS FROM A DIVERSITY OF SOURCES INCLUDING THE PUBLIC, GOVERNMENTAL AGENCIES, OTHER 501(C) 3 PUBLIC CHARITIES, RESEARCH & ACADEMIC INSTITUTIONS, PRIVATE FOUNDATIONS, AND CORPORATE DONORS. OVER THE PAST 5 YEARS, PAF HAS RECEIVED GRANTS, COOPERATIVE AGREEMENTS AND/OR CHARITABLE CONTRIBUTIONS FROM 2196 ORGANIZATIONS AND INDIVIDUALS INCLUDING, BUT NOT LIMITED TO, THE FOLLOWING: O ACADEMYHEALTH O ACROMEGALY COMMUNITY O ALS ASSOCIATION O AMERICAN CANCER FUND O AMERICAN CANCER SOCIETY O AMERICAN DIABETES ASSOCIATION O AMGEN CYCLING CLUB O AYCO CHARITABLE FOUNDATION O BATTLE CREEK COMMUNITY FOUNDATION O BAY AREA CANCER CONNECTIONS O BLACK WOMEN'S HEALTH IMPERATIVE O BRIGHT FUNDS FOUNDATION O CHANGELAB SOLUTIONS O CHARITIES AID FOUNDATION OF AMERICA O CHARITY ON TOP FOUNDATION, INC. O CINCINNATI CANCER ADVISORS O COALITION FOR HEADACHE AND MIGRAINE PATIENTS O CONQUER CANCER FOUNDATION O ECRI INSTITUTE O ESOPHAGEAL CANCER AWARENESS ASSOCIATION O FIDELITY CHARITABLE GIFT FUND O FLORIDA ALLIANCE FOR HEALTHCARE VALUE O FOUNDATION FOR SARCOIDOSIS RESEARCH O FRIENDS OF CANCER RESEARCH O FUCK CANCER O GIVE LIVELY FOUNDATION O GIVINGA FOUNDATION, INC. O GOLDMAN SACHS GIVES O GOODCOIN FOUNDATION O HEALTH RESOURCES IN ACTION (HRIA) O ICER O JOURNEY MINISTRIES O JUSTGIVE O KAPLAN FAMILY FOUNDATION O KINGS CARE FOUNDATION O LANGLEY FOR FAMILIES FOUNDATION O LEUKEMIA & LYMPHOMA SOCIETY O LIVESTRONG FOUNDATION O LL12 LLC O MIA'S MIRACLES O MICHAEL & SUSAN DELL FOUNDATION O MORGAN STANLEY GLOBAL IMPACT FUNDING TRUST O MSHO FOUNDATION O NATIONAL COMPREHENSIVE CANCER NETWORK, INC. O NATIONAL NETWORK OF PUBLIC HEALTH INSTITUTES O NATIONAL OVARIAN CANCER COALITION O NETWORK FOR GOOD O NORC O ORANGE COUNTY UNITED WAY O PANCREATIC CANCER ACTION NETWORK O PAYPAL CHARITABLE GIVING FUND O PCORI O PHARMACY QUALITY ALLIANCE O PHRMA FOUNDATION O PIKES PEAK UNITED WAY O PLEDGELING FOUNDATION O RAYMOND JAMES CHARITABLE O S. SYDNEY DEYOUNG FOUNDATION O SCHWAB CHARITABLE FUND O SHARSHERET O T. ROWE PRICE PROGRAM FOR CHARITABLE GIVING O THE 6:52 PROJECT FOUNDATION O THE ARDS ALLIANCE O THE BENEVITY COMMUNITY IMPACT FUND O THE DONNA FOUNDATION O UNITED WAY OF THE CAPITAL REGION O VANGUARD CHARITABLE O WINSTON-SALEM FOUNDATION O YOUNG SURVIVAL COALITION O YOURCAUSE LLC O ZERO PROSTATE CANCER GOVERNMENTAL AGENCIES: O CENTERS FOR DISEASE CONTROL AND PREVENTION O CITY OF NEWPORT NEWS CORPORATIONS AND CORPORATE FOUNDATIONS O 196 DONATING CORPORATIONS AND CORPORATE FOUNDATIONS O 75 MADE DONATIONS IN FY2022/2023 ACADEMIC AND RESEARCH INSTITUTIONS & PRIVATE FOUNDATIONS O AMERICAN INTERNATIONAL COLLEGE O AUGUST & ROSEMARY RIDOLFI IRREVOCABLE TRUST O BEGIN AGAIN FOUNDATION O BERNARD MCDONOUGH FOUNDATION, INC. O BREAST CANCER RESEARCH FOUNDATION OF ALABAMA O BUTLER CLASS OF 66 O ECOG-ACRIN MEDICAL RESEARCH FOUNDATION, INC O FISHMAN FAMILY FOUNDATION O HARVARD MEDICAL SCHOOL O HIGH PINES FOUNDATION O MAHAN FOUNDATION O RANDOLPH D. ROUSE FOUNDATION O ROBERT WOOD JOHNSON FOUNDATION O SAINT LEO UNIVERSITY O SEEDS OF FAITH, INC. O THE SONTAG FOUNDATION O THE UNIVERSITY OF ALABAMA AT BIRMINGHAM O THE WILDFLOWER FOUNDATION, INC. O UNC AT CHAPEL HILL OFFICE OF SPONSORED RESEARCH O UNIVERSITY OF CALIFORNIA, SAN FRANCISCO O UNIVERSITY OF MINNESOTA O W MONTAGUE COBB NMA HEALTH INSTITUTE GENERAL PUBLIC O RECEIVED MEMORIAL, HONORARY, AND GENERAL SUPPORT AND CONTRIBUTIONS FROM OVER 399 INDIVIDUALS IN FY2022/2023. O RECEIVED DONATIONS FROM OVER 1844 INDIVIDUALS OVER THE PAST 5 YEARS IN FY2022/2023, PAF RECEIVED CONTRIBUTIONS FROM 524 DONORS INCLUDING SUPPORT FROM INDIVIDUALS, CORPORATE PARTNERS AND FOUNDATIONS, GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. 3. REPRESENTATIVE GOVERNING BODY THE PAF EXECUTIVE BOARD OF DIRECTORS COMPRISED OF 16 VOTING MEMBERS, AND 3 NON-VOTING MEMBERS, ALL OF WHOM ARE NATIONALLY RECOGNIZED EXPERTS IN THE FIELDS OF HEALTHCARE ADMINISTRATION, CLINICAL PRACTICE AND RESEARCH, HIGHER EDUCATION, DIRECT PATIENT CARE, NON-PROFIT MANAGEMENT, GOVERNMENT/PUBLIC HEALTH, PATIENT ADVOCACY, HEALTH INSURANCE, TECHNOLOGY, AND LAW. THE COMPOSITION OF THE BOARD IS A DEMONSTRATION IN PRACTICE TO PAF'S COMMITMENT REPRESENTING THE BROAD INTEREST, AND UNIQUE PERSPECTIVES, OF THE GENERAL PUBLIC AND TO GOVERN THE OPERATIONS WITH A DIVERSE, YET UNIFIED, POINT OF VIEW THAT WILL ENABLE THE FOUNDATION TO EXECUTE MEANINGFUL PATIENT PROGRAMS, DESIGNED TO ADDRESS GAPS IN THE CURRENT HEALTHCARE ENVIRONMENT AND ATTRACT SUPPORT FROM A BROAD RANGE OF POTENTIAL DONORS. THE PAF EXECUTIVE BOARD OF DIRECTORS HOLDS FIDUCIARY RESPONSIBILITY AND MANAGES AND CONTROLS THE ORGANIZATION AND PROPERTY OF PAF TO THE EXTENT VESTED IN THEM BY THE PAF BYLAWS. IT IS THE RESPONSIBILITY OF THE BOARD TO ENSURE THE ORGANIZATION IS RUN IN A FISCALLY RESPONSIBLE MANNER AND THAT ALL PROGRAMS INITIATED AND DELIVERED BY PAF ARE ALIGNED WITH THE MISSION OF PAF. THE PAF BOARD OF DIRECTORS ASSESSES THE ORGANIZATION'S PERFORMANCE AND EFFECTIVENESS AND DETERMINES FUTURE ACTIONS REQUIRED, IF ANY, TO ACHIEVE ITS MISSION. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (G) THE BOARD OF DIRECTORS STRUCTURE ALSO HAS SEVEN (7) SUBCOMMITTEES THAT INCLUDE: EXECUTIVE COMMITTEE, GOVERNANCE COMMITTEE, FINANCE & AUDIT COMMITTEE, COMPENSATION AND BENEFITS COMMITTEE, PROGRAM COMMITTEE, NOMINATING COMMITTEE, AND BUILDING AND GROUNDS COMMITTEE. THE FULL BOARD OF DIRECTORS MEETS THREE (3) TIMES PER YEAR, TO BE FULLY BRIEFED ON THE ACTIVITIES OF THE FOUNDATION INCLUDING PROGRAM INITIATIVES AND OUTCOMES, FINANCIALS AND OVERALL ORGANIZATIONAL GROWTH AND FUNCTIONALITY. THE FULL BOARD IS ALSO SUPPLIED WITH SUPPLEMENTAL ORGANIZATIONAL IMPACT REPORTS TWICE PER YEAR AS WELL AS THE ANNUAL IMPACT REPORT, WHICH IS ALSO MADE PUBLICLY AVAILABLE. THE FINANCE COMMITTEE IS SUPPLIED WITH FINANCIAL REPORTS ON A REGULAR BASIS FOR REVIEW AND COMMENT AND THE FULL EXECUTIVE BOARD RECEIVES A FULL FINANCIAL REPORTING PACKAGE ON A BIANNUAL BASIS. THE PAF EXECUTIVE BOARD IS A VERY KNOWLEDGEABLE ABOUT THE HEALTHCARE AND BUSINESS ENVIRONMENTS AND SERVES AS ADVISORS TO PAF MANAGEMENT TO ENSURE THAT PAF PROGRAMMING IS MEETING THE NEEDS OF THE CHRONICALLY AND CRITICALLY ILL PATIENTS LIVING AMONG US IN THE GENERAL POPULATION. PAF'S COMPLIANCE PROGRAM REQUIRES THAT ALL BOARD OF DIRECTORS MEMBERS AGREE TO COMPLY WITH THE FOUNDATION'S CONFLICT OF INTEREST POLICY (COI), REQUIRING ANNUAL DISCLOSURE OF ANY REAL OR POTENTIAL CONFLICTS, AS WELL AS DISCLOSURE THROUGHOUT THE YEAR IF NEW REAL OR POTENTIAL CONFLICTS ARISE THROUGH THE COMPLETION OF THE COI DISCLOSURE FORM. FURTHER, ALL DIRECTORS AGREE TO COMPLETE FORM 990 DIRECTOR AND OFFICER DISCLOSURE STATEMENT, REQUIRING THE ANNUAL EVALUATION OF THE DIRECTOR'S INDEPENDENCE PURSUANT TO IRS REQUIREMENTS AND DEFINITION OF "INDEPENDENCE". PAF'S BYLAWS REQUIRE THAT ALL CURRENT AND FUTURE VOTING MEMBERS OF THE PAF EXECUTIVE BOARD BE INDEPENDENT PER THE IRS DEFINITION OF INDEPENDENCE. ALL VOTING MEMBERS OF PAF'S EXECUTIVE BOARD OF DIRECTORS WERE ALL INDEPENDENT IN FY2022/2023. PAF'S GOVERNANCE COMMITTEE OF THE BOARD OF DIRECTORS IS CHARGED WITH OVERSEEING, MONITORING, AND ENFORCING COMPLIANCE WITH BOARD STANDARDS OF CONDUCT AND DUTIES, INCLUDING, BUT NOT LIMITED TO COI, SELF-DEALING, CODE OF CONDUCT, CONFIDENTIALITY, AND COMPENSATION. THEY ARE CHARGED WITH THE REVIEW AND DETERMINATIONS OF COI'S AND DIRECTOR'S INDEPENDENCE ANNUALLY. ADDITIONAL PROVISIONS TO ENSURE INDEPENDENCE THAT HAVE BEEN ADOPTED BY PAF INCLUDE; THE DIRECTOR, NOR IMMEDIATE FAMILY MEMBER OF THE DIRECTOR, CAN BE A DONOR TO PAF'S CPR PROGRAM OR A DIRECTOR, OFFICER OR EMPLOYEE OF A DONOR TO PAF'S CPR PROGRAM; A DIRECTOR CANNOT BE A FORMER DIRECTOR, OFFICER OR EMPLOYEE OF A DONOR TO PAF'S CPR PROGRAM MAINTAINING AN ONGOING RELATIONSHIP WITH SUCH DONOR (VIA CONSULTING OR OTHERWISE); A DIRECTOR CANNOT BE AN IMMEDIATE FAMILY MEMBER OR FORMER DIRECTOR, OFFICER OR EMPLOYEE OF A DONOR TO PAF'S CPR PROGRAM AND SUCH IMMEDIATE FAMILY MEMBER MAINTAINS AN ONGOING RELATIONSHIP WITH SUCH DONOR (VIA CONSULTING OR OTHERWISE). THE COMMITTEE IN FY2022/2023 CONSISTED OF EIGHT (8) INDEPENDENT MEMBERS OF THE PAF BOARD OF DIRECTORS. PER POLICY, PAF'S BOARD DOES NOT INCLUDE ANY EMPLOYEE AND/OR BOARD MEMBERS OF A DONOR ORGANIZATION, THUS, ELIMINATING THE INFLUENCE OF A DONOR FROM THE GOVERNING BODY OF PAF. MOREOVER, NO DONOR HAS THE AUTHORITY TO APPOINT DIRECTORS TO THE PAF BOARD. IN THIS REGARD, PAF IS STRIKINGLY DIFFERENT FROM A PRIVATE FOUNDATION WHERE IT IS COMMONPLACE FOR THE GOVERNING BODY TO BE COMPRISED OF MAJOR CONTRIBUTORS, MEMBERS CHOSEN BY MAJOR CONTRIBUTORS AND/OR FAMILY MEMBERS AFFILIATED TO THE FOUNDATION, OR BOTH. 4. AVAILABILITY OF PUBLIC FACILITIES OR SERVICES; PUBLIC PARTICIPATION IN PROGRAMS OR POLICIES PAF'S PROGRAMS ARE DESIGNED FOR, AND AVAILABLE TO, THE GENERAL PUBLIC AND THE ORGANIZATION'S OPERATIONAL MODELS SUPPORT BROAD AVAILABILITY OF AND ACCESS TO PAF'S PATIENT SERVICES INCLUDING CASE MANAGEMENT SUPPORT, FINANCIAL AID FUNDS, THE CO-PAY RELIEF PROGRAM, PATIENT EDUCATION AND EMPOWERMENT PROGRAMS AND HEALTH EQUITY PROGRAMMING. OVER THE COURSE OF THE ORGANIZATION'S HISTORY, PAF HAS CONTINUOUSLY OFFERED PATIENT SERVICE PROGRAMS TO THE PUBLIC. THERE HAS BEEN A GREAT DEAL OF TIME AND ENERGY DEDICATED TO THE PROMOTION OF THE PROGRAMS OFFERED BY PAF AS IT IS A KEY PRIORITY OF THE ORGANIZATION THAT THE PROGRAMS REACH ANYONE WHO NEEDS THEM. IN FY2022/2023, PAF SERVED OVER 185,000 PEOPLE, LIVING IN ALL 50 STATES AND US TERRITORIES, SUFFERING WITH OVER 1,200 VARIOUS CHRONIC, DEBILITATING AND/OR CRITICAL DISEASES. REFERRALS INTO PAF PROGRAMS COME FROM THOUSANDS OF SOURCES, WITH OTHER CHARITABLE NON-PROFIT ORGANIZATIONS AND HEALTHCARE PROFESSIONS, INCLUDING NURSES, SOCIAL WORKERS AND FINANCIAL COUNSELORS, TOPPING THE LIST WITH THE GREATEST FREQUENCY OF REFERRALS, AS DOCUMENTED IN THE PAF PATIENT PROGRAM DATABASES AND ANNUAL IMPACT REPORT (HTTPS://WWW.PATIENTADVOCATE.ORG/WP-CONTENT/UPLOADS/2022ANNUALIMPACTREPO RTFINALWEB.PDF ). EACH PATIENT SERVED BY PAF NEEDED ASSISTANCE WITH ACCESS TO CARE AND AFFORDABILITY ISSUES, INCLUDING COST OF LIVING CHALLENGES THAT THEY FACED DUE TO THEIR ILLNESS. PATIENTS ARE EDUCATED ABOUT THE AVAILABILITY OF THE PAF PROGRAMS THROUGH MANY CHANNELS INCLUDING, BUT NOT LIMITED TO, MULTI-MEDIA (EARNED AND PAID), OTHER NON-PROFIT, DISEASE SPECIFIC ORGANIZATIONS, PROVIDERS, PHARMACIES, SOCIAL WORKERS, FINANCIAL COUNSELORS, SOCIAL SERVICES, GOVERNMENT AGENCIES AND OTHER PATIENTS SERVED PREVIOUSLY BY PAF. IN FY2022/2023 PAF REACHED 717,999 OF ITS SUBSCRIBERS WITH PERSONALIZED COMMUNICATIONS THAT HAD A 44% OVERALL OPEN RATE. PAF UTILIZES VARIOUS PROMOTIONS AND EDUCATION ACTIVITIES TO ENSURE THAT THERE IS BROAD AWARENESS IN THE GENERAL PUBLIC, AND AMONG THOSE HEALTHCARE STAKEHOLDERS CARING FOR THE SICK AND DISABLED LIVING IN SOCIETY, OF THE FOUNDATION'S PATIENT PROGRAMS INCLUDING, BUT NOT LIMITED TO: REGULAR EMAIL COMMUNICATIONS TO THE PAF LIST SERVE; INCLUSIVE OF THOUSANDS OF PROVIDERS, PHARMACIES, NON-PROFIT ORGANIZATIONS, PATIENTS, FAMILIES, AND CAREGIVERS WHO HAVE UTILIZED PAF PROGRAMS DEVELOPMENT AND MAINTENANCE OF PAF AND CPR WEBSITES; INCLUSIVE OF EXTENSIVE PATIENT EDUCATION MATERIALS AND RESOURCE DIRECTORIES/ONLINE TOOLS. ROUTINE PARTICIPATION IN LOCAL, REGIONAL AND NATIONAL OUTREACH EVENTS; INCLUDING EXHIBITING AT CONFERENCES, SPEAKING ENGAGEMENTS, AND TRAINING SESSIONS FOR OTHER AGENCIES. ROUTINE DELIVERY OF "THE SPOTLIGHT", AN EDUCATIONAL SERIES DESIGNED TO ADDRESS CONCEPTS RELATED TO VARIOUS HEALTHCARE/INSURANCE AND/OR ENTITLEMENT PROGRAMS, DEVELOPMENT AND RELEASE OF PAF TOPIC-BASED STORY BOARDS AD PLACEMENTS ON SOCIAL CHANNELS INCLUDING FACEBOOK AND YOUTUBE AD AND PSA PLACEMENTS ON IHEART RADIO PUBLISHING AND DISSEMINATION OF THE PAF ANNUAL IMPACT REPORT LINKS FROM AND TO VARIOUS NON-PROFIT PATIENT ORGANIZATIONS WEBSITES AND PAF'S WEBSITES AND ONLINE RESOURCE TOOLS. ONGOING RELATIONSHIP DEVELOPMENT AND MAINTENANCE WITH DISEASE SPECIFIC NON-PROFIT ORGANIZATIONS THAT SERVE THE PATIENTS FOR WHICH WE HAVE PROGRAMS AVAILABLE TO ENSURE THEY ARE CONNECTING PATIENTS TO OUR PROGRAMS AS THEY NEED OUR SUPPORT. DEVELOPMENT OF THE PATIENT PARTNER FOR EQUITY PROGRAM AND DISTRIBUTION OF ASSOCIATED NEWSLETTER DISTRIBUTION OF PRESS RELEASES PUBLICLY ANNOUNCING THE ADDITION OF NEW PATIENT PROGRAMS AND/OR EXPANSION OF EXISTING PROGRAMS. INCLUSION IN EARNED MEDIA STORIES; PROFILES OF PAF PROGRAMS AND PATIENTS SERVED BY PAF SUMMARY IN SUMMARY, PATIENT ADVOCATE FOUNDATION EMBODIES ALL THE CHARACTERISTICS OF A PUBLICLY SUPPORTED ORGANIZATION, BASED ON THE FACTS AND CIRCUMSTANCES TEST DESCRIBED IN SECTION 1.170A-9(E) (3) OF THE TREASURY REGULATIONS. PAF DEMONSTRATES, IN POLICY AND PRACTICE, THAT ITS OPERATIONS ARE FREE FROM THE INFLUENCE AND CONTROL OF ITS DONORS, FURTHER, THERE IS NO EVIDENCE THAT A SMALL GROUP OF DONORS CONTROL PAF; RATHER, PAF IS A DIVERSE, COMPLEX PATIENT SUPPORT ORGANIZATION THAT HAS OPERATED AS A PUBLICLY SUPPORTED ORGANIZATION. PAF CONTINUES TO OPERATE CONGRUENTLY WITH A PUBLICLY SUPPORTED ORGANIZATION, GARNERING SUPPORT FROM A BROAD CROSS SECTION OF DONORS, INCLUDING THE GOVERNMENT, OTHER PUBLIC CHARITIES, AND THE GENERAL PUBLIC, WITH A REPRESENTATIVE GOVERNING BODY. PAF CONTINUES ITS DILIGENCE IN SEEKING NEW SOURCES OF SUPPORT FROM THE GENERAL PUBLIC AS WELL AS OTHER ORGANIZATIONS AND GOVERNMENTAL AGENCIES. ACCORDINGLY, THE FOUNDATION QUALIFIES AS A "PUBLICLY SUPPORTED ORGANIZATION AS DESCRIBED IN SECTION 170(B) (1) (A) (VI). |
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