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) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 368,892,961 | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 1,483,886,257 |
| 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 | 368,892,961 | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 1,483,886,257 |
| 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) .. | 1,179,634,868 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 304,251,389 | |||||
Calendar year
(or fiscal year beginning in)
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(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 368,892,961 | 234,013,794 | 290,724,577 | 310,011,893 | 280,243,032 | 1,483,886,257 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 2,946,894 | 5,514,479 | 3,816,326 | 718,528 | 580,710 | 13,576,937 |
| 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 | 1,497,463,194 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (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) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (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 2021 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-2021 |
(iii) Distributable Amount for 2021 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2021 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2021 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2021: | ||||
| a From 2016....... | ||||
| b From 2017....... | ||||
| c From 2018....... | ||||
| d From 2019....... | ||||
| e From 2020....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2021 distributable amount | ||||
|
i
Carryover from 2016 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2021 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2021 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2021, 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 2021. 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 2022. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2017..... | ||||
| b Excess from 2018..... | ||||
| c Excess from 2019..... | ||||
| d Excess from 2020..... | ||||
| e Excess from 2021..... | ||||
| Facts And Circumstances Test |
|---|
| PATIENT ADVOCATE FOUNDATIONSECTION 170(B) (1) (A) ORGANIZATIONFACTS & CIRCUMSTANCES TEST; FY2021/2022PATIENT 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). ORGANIZATION BACKGROUND & PROGRAM INFORMATIONPATIENT ADVOCATE FOUNDATION (FOUNDATION OR PAF) IS A 501(C) 3 NATIONAL NONPROFIT ORGANIZATION THAT IS ORGANIZED TO SAFEGUARD PATIENTS THROUGH EFFECTIVE MEDIATION ASSURING ACCESS TO CARE, MAINTENANCE OF EMPLOYMENT AND PRESERVATION OF FINANCIAL STABILITY RELATIVE TO THEIR DIAGNOSIS OF LIFE THREATENING OR DEBILITATING DISEASES. FOR MORE THAN TWO DECADES, PAF HAS PROVIDED FINANCIAL AND INSURANCE NAVIGATION, SOCIAL SERVICES SUPPORT, DIRECT FINANCIAL SUPPORT AND EDUCATIONAL SERVICES FOR MILLIONS OF PRIMARILY LOW-INCOME PATIENTS AND CAREGIVERS EXPERIENCING DISTRESSING FINANCIAL, EMPLOYMENT, INSURANCE COVERAGE OR HOUSEHOLD MATERIAL HARDSHIPS BECAUSE OF THEIR HEALTH CONDITIONS AND ASSOCIATED TREATMENT. THROUGH THIS WORK WE HAVE CREATED AND CURATED AN EXTENSIVE CATALOGUE OF RESOURCES, EXPERIENCE, AND EXPERTISE IN DESIGNING AND IMPLEMENTING PROJECTS AS WELL AS ANALYZING DATA TO SUPPORT OUR GROWING RESEARCH AND EVALUATION PORTFOLIO TO PROMOTE THE DELIVERY OF PERSON-CENTERED CARE.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 NEARLY 179,000 PATIENTS IN FY2021/2022, INCLUDING CASE MANAGEMENT SERVICES AND FINANCIAL AID TO OVER 2,000 PEOPLE WHO WERE IMPACTED BY THE COVID-19 GLOBAL PANDEMIC AND LIVE WITH A CHRONIC OR CRITICAL HEALTH CONDITION. PAF HAS PROVIDED HELP AND ASSISTANCE TO OVER 1.7 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 26 YEARS, PATIENT ADVOCATE FOUNDATION (PAF) 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. THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY INTERVENED ON BEHALF OF 18,923 INDIVIDUALS, LIVING IN ALL 50 STATES, IN FY2021/2022. THESE PATIENTS ARE LIVING WITH 1,003 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH 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 APPROXIMATELY 374,555 UNIQUE CONTACTS AND AN AVERAGE DEBT RELIEF/PATIENT SAVING OF $1,035 PER CASE ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT SERVICES. PAF ALSO PROVIDED 6,532 EDUCATION PUBLICATIONS TO THE PATIENTS SERVED BY CASE MANAGEMENT AND THOSE WHO REQUESTED EDUCATIONAL INFORMATION. PAF PROVIDES THESE SERVICES THROUGH A COMPLIMENT OF 34 UNIQUE PROGRAMS.PAF ALSO ADMINISTERED A SUITE OF SEVENTEEN (17) SMALL GRANT PROGRAMS IN FY2021/2022, 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 FY2021/2022, PROGRAM STAFF FIELDED 13,288 TELEPHONE CALLS AND SUCCESSFULLY PROVIDED ONE-TIME SMALL GRANTS TO 1,509 PATIENTS, TOTALING $963,300 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- MAHAN FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH ACUTE MYELOID LEUKEMIA- MERKEL CELL CARCINOMA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A RARE FORM OF SKIN CANCER - METASTATIC BREAST CANCER FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH STAGE III OR STAGE IV BREAST CANCER- NATIONAL OVARIAN CANCER COALITION CLINICAL TRIAL FUND: SUPPORTS PATIENTS THAT HAVE BEEN DIANOSED 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 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 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.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.(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 III, LINE 4A - PROGRAM SERVICE ACCOMPLISHMENTS | HEPATITIS B, HEPATITIS C, HEPATOCELLULAR CARCINOMA, HIV, AIDS AND PREVENTION, HOMOZYGOUS FAMILIAL HYPERCHOLESTEROLEMIA, INHERITED OR ACQUIRED LIPODYSTROPHY, LUPUS, MELANOMA, METASTATIC BREAST CANCER, METASTATIC COLORECTAL CANCER, METASTATIC GASTRIC CANCER, METASTATIC MELANOMA, METASTATIC PROSTATE CANCER, MULTIPLE MYELOMA, MULTIPLE SCLEROSIS, MYELODYSPLASTIC SYNDROMES, NON-SMALL CELL LUNG CANCERS, OSTEOPOROSIS, OVARIAN CANCER, PANCREATIC CANCER, PERIODIC PARALYSIS, PERIPHERAL VASCULAR DISEASE, PROSTATE CANCER, PULMONARY FIBROSIS, PULMONARY HYPERTENSION, RENAL CELL CARCINOMA, RHEUMATOID ARTHRITIS, SKIN CANCER, SPINAL MUSCULAR ATROPHY, ULCERATIVE COLITIS, AND UTERINE CANCERS. ALSO, IN FY2021/2022 PAF'S CO-PAY RELIEF PROGRAM ESTABLISHED HEALTH EQUITY FUNDS, 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. THE FOLLOWING TEN (10) HEALTH EQUITY FUNDS HELPED PATIENTS IN THESE 220 COUNTIES: BREAST CANCER HEALTH EQUITY FUND, CORONARY ARTERY DISEASE HEALTH EQUITY FUND, DIABETES HEALTH EQUITY FUND, HEPATITIS C HEALTH EQUITY FUND, METASTATIC COLORECTAL CANCER HEALTH EQUITY FUND, MULTIPLE MYELOMA HEALTH EQUITY FUND, NON-SMALL CELL LUNG CANCERS HEALTH EQUITY FUND, OVARIAN CANCER HEALTH EQUITY FUND, PROSTATE CANCER HEALTH EQUITY FUND, AND THE VIROLOGY TESTING HEALTH EQUITY FUND. THE PAF'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 FY2021/2022, THE FOUNDATION ADMINISTERED COPAYMENT ASSISTANCE TO 68,399 QUALIFIED PATIENTS THROUGH 47 ASSISTANCE FUNDS AVAILABLE THROUGH THE CO-PAY RELIEF PROGRAM. THE PROGRAM STAFF FIELDED 170,107 TELEPHONE CALLS AND PROCESSED CLAIMS TOTALING OVER $267,447,528 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 600,000 INDIVIDUALS ALLOCATING NEARLY $1.9 BILLION DOLLARS IN CO-PAYMENT AWARDS. THE FOUNDATION ALSO ADMINISTERED A SUITE OF SEVENTEEN (17) SMALL GRANT PROGRAMS IN 2022, 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 2022, PROGRAM STAFF FIELDED 13,288 TELEPHONE CALLS AND SUCCESSFULLY PROVIDED ONE-TIME SMALL GRANTS TO 1,509 PATIENTS, TOTALING $963,300 IN FINANCIAL RELIEF. IN 2021, 11,422 PATIENTS RECEIVED FINANCIAL RELIEF FROM SIXTEEN (16) FINANCIAL FUNDS, TOTALING MORE THAN $5,624,600. 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, 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 FINANCIAL AID FUND: SUPPORTS FUNERAL EXPENSES ASSOCIATED WITH PATIENTS WHO HAVE PASSED AND DIED FROM ARDS, TSS AND/OR SEPSIS O MAHAN FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH ACUTE MYELOID LEUKEMIA O MERKEL CELL CARCINOMA FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH A RARE FORM OF SKIN CANCER O METASTATIC BREAST CANCER FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH STAGE III OR STAGE IV BREAST 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 |
| FORM 990, PART III, LINE 4C - PROGRAM SERVICE ACCOMPLISHMENTS | HEALTHCARE SYSTEM. CASE MANAGEMENT SERVICES ARE PROVIDED AT NO COST TO PATIENTS AND THEIR FAMILIES. DURING FY2021/2022, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY WORKED WITH OR ON BEHALF OF 18, 923 INDIVIDUALS. THESE PATIENTS REPRESENTED 1,004 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH 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 ISSUES. THIS WORK TRANSLATES TO APPROXIMATELY 374,555 UNIQUE CONTACTS AND AN AVERAGE DEBT RELIEF/PATIENT SAVINGS OF $1,035 PER CASE ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT SERVICES. PAF ALSO PROVIDED 6,532 EDUCATION PUBLICATIONS TO THE PATIENTS SERVED BY CASE MANAGEMENT AND THOSE WHO REQUESTED EDUCATIONAL INFORMATION. PAF PROVIDES THESE SERVICES THROUGH A COMPLIMENT OF 34 UNIQUE PROGRAMS. DURING 2021, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY INTERVENED ON BEHALF OF 21,336 INDIVIDUALS. THESE PATIENTS ARE COLLECTIVELY LIVING WITH 630 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH AN AVERAGE OF TWO ISSUES THAT WERE CREATING OBSTACLES TO CARE. ON AVERAGE, CASE MANAGERS MADE 13.8 CONTACTS ON BEHALF OF EACH CASE TO RELEVANT STAKEHOLDERS TO BRING RESOLUTION TO THE PATIENT'S ACCESS ISSUES. THIS TRANSLATES TO OVER 294,386 UNIQUE CONTACTS ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT INTERVENTION SERVICES. PAF PROVIDED THESE SERVICES THROUGH A COMPLIMENT OF 31 UNIQUE PROGRAMS. PATIENT EDUCATION AND EMPOWERMENT PAF EXTENDS ITS PATIENT SERVICES THROUGH THE DEVELOPMENT AND DELIVERY OF PATIENT EDUCATION AND EMPOWERMENT TOOLS FOCUSED ON PROVIDING ACTIONABLE ADVICE AND GUIDANCE TO HEALTHCARE CONSUMERS TO IMPROVE THEIR EVERYDAY EXPERIENCE WITH INSURANCE AND TO ENCOURAGE PATIENT'S ENGAGEMENT IN THE HEALTHCARE SYSTEM. WE MODEL OUR EDUCATIONAL ACTIVITIES ON THE CONVERSATIONS WHICH TAKE PLACE BETWEEN CASE MANAGERS, PATIENTS, AND THEIR CAREGIVERS, FOCUSING ON THOSE TOPICS FOR WHICH PATIENTS MOST FREQUENTLY SEEK OUR HELP. EACH YEAR, PAF CREATES, MAINTAINS, AND DISTRIBUTES A WIDE ARRAY OF PATIENT EDUCATION MATERIALS AND ONLINE TOOLS, IN PRINTED AND ELECTRONIC FORM. PAF'S EDUCATIONAL PORTFOLIO COVERS A BROAD RANGE OF TOPICS, AVAILABLE IN A VARIETY OF FORMATS, TO MEET THE NEEDS AND PREFERENCES OF MULTIPLE AUDIENCES, INCLUDING PATIENTS, CAREGIVERS AND PROFESSIONALS INCLUDING THOSE WHO INTERACT DIRECTLY WITH THE FOUNDATION REQUESTING ASSISTANCE AS WELL AS THE PUBLIC VISITING OUR WEBSITE AND CONNECTING WITH PAF. PAF'S PATIENT EDUCATION MATERIALS ARE ROUTINELY UTILIZED BY OTHER ORGANIZATIONS AND FACILITIES WHO SHARE THEM WITH THEIR PATIENTS. THE FOUNDATION MAINTAINS AN EXTENSIVE LIBRARY OF PAF AUTHORED PATIENT EDUCATIONAL PUBLICATIONS, ON-DEMAND WEBINARS, INTERACTIVE TRAINING SERIES, AND INTERACTIVE RESOURCE TOOLS ALL OF WHICH ARE AVAILABLE FREE OF CHARGE TO PATIENTS. DURING FY2021/2022, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM PUBLISHED 45 NEW, TRANSLATED, OR REVISED PUBLICATIONS AND 10 EDUCATIONAL W1EBINARS. PAF ALSO SUPPORTED 4 MULTI-YEAR EDUCATIONAL PROJECTS (PATIENT ACTION COUNCIL PROJECT, HEALTH INSURANCE LITERACY, MIGRAINE MATTERS AND MATTERS OF THE HEART), AND STARTED A NEW INTERACTIVE TRAINING SERIES PROJECT ENTITLED "THE LIGHTHOUSE TRAINING SERIES: HELPING YOU PREPARE FOR AND RESPOND TO THE FINANCIAL IMPACT OF CRITICAL ILLNESSES". PAF'S PATIENT EDUCATION AND EMPOWERMENT DEPARTMENT RECEIVED 2 AWARDS THIS PAST YEAR INCLUDING THE BRONZE MEDAL FOR HEALTH INSURANCE DENIALS AND APPEALS: DON'T TAKE NO FOR AN ANSWER - A PAF TRAINING SERIES IN THE DIGITAL HEALTH MEDIA/PUBLICATIONS VIDEO SERIES AND A MERIT WINNER FOR ENGAGING WITH INSURERS: APPEALING A DENIAL IN THE DIGITAL HEALTH MEDIA/PUBLICATIONS BOOKLET/BROCHURE CATEGORY. PAF'S MOST UTILIZED PATIENT RESOURCE IS THE NATIONAL FINANCIAL RESOURCE DIRECTORY. IN FY2021/2022, PAF ADDED 38 NEW RESOURCES AND UPDATED 548 RESOURCES. USERS OF THE DIRECTORY COMPLETED 33,340 ELECTRONIC SEARCHES FOR RESOURCES THAT RESULTED IN 811,395 MATCHING RESOURCES BEING PROVIDED TO USERS, AN AVERAGE OF 24 CUSTOMIZED RESOURCES PROVIDED PER USER SEARCH. USERS SEARCHED FOR FINANCIAL ASSISTANCE CATEGORIES MOST FREQUENTLY. THE TOP 8 CATEGORIES (IN ORDER OF HIGHEST SEARCHES) INCLUDE: MEDICAL BILLS & GENERAL FINANCIAL HELP, HOUSING & LODGING, CHARITABLE COPAYMENT ASSISTANCE, TRANSPORTATION, UTILITIES, DENTAL CARE, AFFORDABLE OPTIONS FOR CARE, FOOD & NUTRITION. DURING FY2021/2022, 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 VIRTUAL EVENTS WERE STILL HIGHLY EFFECTIVE AND WELL ATTENDED, IN-PERSON EVENTS BEGAN RETURNING MID-YEAR WITH GROWING ATTENDANCE RATES. THIS PROVIDED PAF THE OPPORTUNITY TO CONTINUE REACHING A BROADER AUDIENCE THROUGH VARIOUS SOURCES AND CONTINUE TO INCREASE PUBLIC AWARENESS OF PAF RESOURCES TO HOMEBOUND INDIVIDUALS, AS WELL AS EVENT ATTENDEES. IN FY2021/2022, THE FOUNDATION INCREASED ITS ATTENDED OUTREACH EVENTS TO 122 AND DISTRIBUTED 2200 EDUCATIONAL PUBLICATIONS THROUGH THESE EVENTS. HEALTH EQUITY INITIATIVE PATIENT ADVOCATE FOUNDATION CONTINUES PROMOTES HEALTH EQUITY BY ADDRESSING SOCIAL NEEDS GAPS AND SOCIAL DETERMINANTS OF HEALTH AT THE INDIVIDUAL, COMMUNITY, AND NATIONAL LEVEL. BROAD LOCAL AND NATIONAL OUTREACH EVENTS ADDRESS POPULATIONS WITH LOW SOCIO-ECONOMIC CHARACTERISTICS AND FOCUS ON COMMUNITIES WITH HIGH DISEASE MORBIDITY AND PREMATURE MORTALITY FROM THE LEADING CAUSES OF DEATH. SPECIFIC ACTIVITIES FOCUS ON TACKLING SOCIAL/FINANCIAL SUPPORT NEEDS AND MITIGATING BARRIERS THAT IMPACT ACCESS TO HEALTH SERVICES. O SELFMADE HEALTH NETWORK (SMHN) - TRI-NETWORKS HPV LEARNING COLLABORATIVE - SMHN IN COLLABORATION WITH GEOGRAPHIC HEALTH EQUITY ALLIANCE AND NUESTRAS VOCES (PART OF A CONSORTIUM SUPPORTED BY CDC'S NETWORKING2SAVE PROGRAM) COMPLETED COHORT ONE OF THE TRI-NETWORKS HPV VACCINATION LEARNING COLLABORATIVE. 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 SEVEN STATES (FLORIDA, NEW JERSEY, MICHIGAN, OHIO, GEORGIA INDIANA, AND TENNESSEE) PARTICIPATED IN THREE VIRTUAL LEARNING SESSIONS, ONE-ON- ONE TECHNICAL ASSISTANCE SESSIONS AND AN INTERACTIVE POLICY SESSION. THIS PROJECT WAS SELECTED AND PUBLISHED AS A SUCCESS STORY, NATIONAL NETWORKS COME TOGETHER TO HELP PREVENT HPV- RELATED CANCERS, BY CDC DIVISION OF CANCER PREVENTION AND CONTROL-NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM. O HEALTH EQUITY AFFINITY GROUP - PAF'S COMMITMENT TO ADDRESSING HEALTH EQUITY REMAINS STRONG. THE PAF'S HEALTH EQUITY AFFINITY GROUP (HEAG) PARTICIPATED IN THREE PLANNING SESSIONS TO DEVELOP THE STRATEGIC FRAMEWORK THAT WILL GUIDE INTERNAL ORGANIZATIONAL CHANGE STRATEGIES TO ADVANCE EQUITY. THE FRAMEWORK WAS DESIGNED AROUND THE THREE STRATEGIC FOCUSED AREAS IDENTIFIED BY THE HEAG: 1). EDUCATION AND LEARNING; 2). CULTURE AND VALUE; AND 3). COMMUNICATIONS AND MESSAGING. THE NEXT PHRASE IN THE PROCESS IS THE ESTABLISH WORK STREAMS, TO FINALIZE THE DEVELOPMENT OF KEY ACTIVITIES AND PROGRESS BENCHMARKS TO BE IMPLEMENTED OVER THE NEXT THREE YEARS. THE CONTENT DEVELOPED WILL COMPRISE PAF'S BLUEPRINT FOR ACHIEVING HEALTH EQUITY. O COMMUNITY OUTREACH AND ENGAGEMENT - COMMUNITY ENGAGEMENT, EVEN IN A CONTINUED VIRTUAL ENVIRONMENT, CONTINUES TO ALLOW PAF TO REMAIN CONNECTED WITH STAKEHOLDERS SUPPORTING LIMITED RESOURCES INDIVIDUALS IN COMMUNITIES ACROSS THE COUNTRY. THROUGH VIRTUAL AND RECENT IN-PERSON ACTIVITIES, PAF HAS BEEN ABLE TO REACH 1430 INDIVIDUALS WITH INFORMATION ABOUT RESOURCES AND SERVICES TO SUPPORT PERSONS LIVING WITH CHRONIC AND COMPLEX HEALTH CONDITIONS THROUGH SIX OUTREACH EVENTS. OUTREACH EVENTS INCLUDED 2021 GLOBAL GENES PATIENT ADVOCACY SUMMIT; THE INAUGURAL 2021 RARE DISEASE EQUITY SUMMIT; THE 2022 MEMPHIS LIVE! AFRICAN AMERICAN BREAST CANCER SUMMIT; 2022 GETTING OUR FAIR SHARE CONFERENCE TO END DISPARITIES; AND THE NATIONAL COMPREHENSIVE CANCER NETWORK (NCCN) ANNUAL MEETING. |
| FORM 990, PART III, LINE 4C - PROGRAM SERVICE ACCOMPLISHMENTS | O HEALTH EQUITY THOUGHT LEADERSHIP - PAF, HEALTH EQUITY (HE) STAFF CONTINUES TO PROVIDE GUIDANCE ON NATIONAL AGENDAS TO STIMULATE AND GUIDES CONVERSATIONS TO ADVANCE HEALTH EQUITY. SPECIFICALLY, STAFF HAVE CONTRIBUTED TO THE DEVELOPMENT OF TWO MANUSCRIPTS, ONE FOCUSED ON ELEVATING ISSUES AROUND FOOD INSECURITY AND THE OTHER ON WOMEN AND LUNG CANCER. HE STAFF SERVED AS REVIEWERS FOR THE CURES WITHIN REACH- DIVERSITY, EQUITY AND INCLUSION PROPOSALS AND BRISTOL MYERS SQUIBB FOUNDATION-DIVERSITY IN CLINICAL TRIALS CAREER DEVELOPMENT PROGRAM. ADDITIONALLY, HE STAFF WERE ENGAGED IN CURRICULUM DEVELOPMENT FOR THE BRISTOL MYERS SQUIBB FOUNDATION'S-DIVERSITY IN CLINICAL TRIALS COMMUNITY ORIENTED CLINICAL TRIALIST CURRICULUM COMMITTEE. LASTLY, STAFF IS ACTIVELY ENGAGED IN BUILDING CURRICULUM FOR HEALTHCARE SYSTEMS FOCUSED ON TRUST AND TRUSTWORTHINESS. IN MAY 2022, EXECUTIVE VICE PRESIDENT (EVP) OF HEALTH EQUITY, SHONTA CHAMBERS WAS AWARDED THE PARTNERS IN CANCER CARE AWARD ALONG WITH HER CO-CHAIR DR. ROBERT WINN FOR THEIR WORK WITH THE ELEVATING CANCER EQUITY WORKGROUP (AN INITIATIVE OF THE NATIONAL COMPREHENSIVE CANCER NETWORK, NATIONAL MINORITY QUALITY FORUM AND AMERICAN CANCER SOCIETY CANCER ACTION NETWORK). HE STAFF HAVE EXPANDED ENGAGEMENT WITH THE RARE DISEASE COMMUNITY. THE EVP OF HEALTH EQUITY AND COMMUNITY ENGAGEMENT CO-CHAIRS THE (RDDC) RARE DISEASE DIVERSITY COALITION-PATIENT AND CAREGIVER WORKGROUP. THROUGH THIS WORKGROUP, SHE WILL LEAD THE RDDC THROUGH THE DEVELOPMENT AND EXECUTION OF THE COALITION'S INAUGURAL PATIENT AND CAREGIVER NEEDS SURVEY. THE FINDINGS FROM THE SURVEY WILL BE USED TO GUIDE THE RDDC IN THE DEVELOPMENT OF TOOLS AND RESOURCES TO RESPOND TO GAPS IDENTIFIED BY PATIENTS LIVING WITH RARE DISEASES AND THEIR CAREGIVERS, WITH AN INTENTIONAL FOCUS ON PATIENTS REPRESENTING RACIAL, ETHNIC MINORITY POPULATIONS, PERSONS IN RURAL COMMUNITIES AND PERSONS WITH OTHER LIMITED ABILITIES. 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 2021-2022 INCLUDED PARTNERSHIPS ON FOUR RESEARCH INTERVENTION PROJECTS WITH ACADEMIC AND PARTNERS INCLUDING: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, EMORY UNIVERSITY, AND FRED HUTCHINSON CANCER RESEARCH CENTER. THESE PROJECTS UTILIZED 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 ABOUT THE PATIENT EXPERIENCE DURING THE EARLY-MID STAGES OF THE COVID-19 PANDEMIC INCLUDING: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, UNIVERSITY OF ALABAMA BIRMINGHAM, MD ANDERSON, AND ECOG-ACRIN CANCER RESEARCH GROUP. FIVE ARTICLES WERE PUBLISHED IN PEER REVIEWED JOURNALS AND NINE ABSTRACTS PRESENTED AT NATIONAL MEETINGS. PAF'S RESEARCH EVALUATION AND PATIENT EXPERIENCE TEAM WAS ALSO INVOLVED IN A PATIENT-CENTERED PROJECT TO SUPPORT THE FIELD IN DESIGNING MORE PATIENT-CENTERED DECISION SUPPORT TOOLS AND THREE PATIENT ENGAGEMENT PROJECTS WHERE PAF SERVES/D AS THOUGHT LEADERS AND CONTENT EXPERTS, AS WELL AS FACILITATION OF OUTREACH AND COLLECTION OF THE PATIENT EXPERIENCE ON A NUMBER OF TOPICS INCLUDING TWO PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) FUNDED PROJECTS: "PAVING A PATHWAY TO ENGAGE UNDERSERVED POPULATIONS IN RESEARCH AND THROUGH OUR "COVID-19 LEARNING COMMUNITY". 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 (PATIENT-DRIVEN RESEARCH COMMUNITIES (PDRC) LEARNING NETWORK) AND THE UNIVERSITY OF CALIFORNIA AT SAN FRANCISCO (SIREN: SOCIAL INTERVENTIONS RESEARCH AND EVALUATION NETWORK TO PROVIDE INFRASTRUCTURE AND SUPPORT FOR PATIENT ENGAGEMENT). 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 OUR SCHOLARSHIP PROGRAM, A PROMISE OF HOPE AFFAIR, WAS HELD AS A HYBRID EVENT ON SEPTEMBER 18, 2021. THROUGH THIS EVENT, GENEROUS DONORS TO PAF HELPED MAINTAIN THE EXISTING SCHOLARSHIPS AND EXPAND THE NUMBER OF STUDENTS SUPPORTED THROUGH THE SCHOLARSHIP FOR SURVIVORS PROGRAM FROM THIRTY-ONE IN THE 2021-2022 ACADEMIC YEAR TO FORTY FOR THE 2022-2023 ACADEMIC YEAR. TO DATE, THE FOUNDATION HAS AWARDED 155 SCHOLARSHIPS TOTALING OVER $943,000. |
| 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 -120,500. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE A (A) 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 FY2021/2022, PAF'S CO-PAY RELIEF PROGRAM EXPANDED ITS IMPACT THROUGH THE ADDITION OF TWELVE (12) NEW FUNDS, ASSISTING PATIENTS TEN (10) HEALTH EQUITY FUNDS AND FORTY-THREE (43) INCLUDING ACROMEGALY, ASTHMA, BLADDER CANCER, BREAST CANCER, CANCER GENETIC AND GENOMIC TESTING, CERVICAL CANCER, COVID-19, CYSTIC FIBROSIS, DIABETES, ELECTROLYTE IMBALANCE, GAUCHER DISEASE, HEMOPHILIA, HEPATITIS B, HEPATITIS C, HEPATOCELLULAR CARCINOMA, HIV, AIDS AND PREVENTION, HOMOZYGOUS FAMILIAL HYPERCHOLESTEROLEMIA, INHERITED OR ACQUIRED LIPODYSTROPHY, LUPUS, MELANOMA, METASTATIC BREAST CANCER, METASTATIC COLORECTAL CANCER, METASTATIC GASTRIC CANCER, METASTATIC MELANOMA, METASTATIC PROSTATE CANCER, MULTIPLE MYELOMA, MULTIPLE SCLEROSIS, MYELODYSPLASTIC SYNDROMES, NON-SMALL CELL LUNG CANCERS, OSTEOPOROSIS, OVARIAN CANCER, PANCREATIC CANCER, PERIODIC PARALYSIS, PERIPHERAL VASCULAR DISEASE, PROSTATE CANCER, PULMONARY FIBROSIS, PULMONARY HYPERTENSION, RENAL CELL CARCINOMA, RHEUMATOID ARTHRITIS, SKIN CANCER, SPINAL MUSCULAR ATROPHY, ULCERATIVE COLITIS, UTERINE CANCERS. ALSO, IN FY2021/2022 PAF'S CO-PAY RELIEF PROGRAM ESTABLISHED HEALTH EQUITY FUNDS, 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. THE FOLLOWING TEN (10) HEALTH EQUITY FUNDS HELPED PATIENTS IN THESE 220 COUNTIES: BREAST CANCER HEALTH EQUITY FUND, CORONARY ARTERY DISEASE HEALTH EQUITY FUND, DIABETES HEALTH EQUITY FUND, HEPATITIS C HEALTH EQUITY FUND, METASTATIC COLORECTAL CANCER HEALTH EQUITY FUND, MULTIPLE MYELOMA HEALTHY EQUITY FUND, NON-SMALL CELL LUNG CANCERS HEALTH EQUITY FUND, OVARIAN CANCER HEALTH EQUITY FUND, PROSTATE CANCER HEALTH EQUITY FUND, VIROLOGY TESTING HEALTH EQUITY FUND. 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 FY2021/2022, THE FOUNDATION ADMINISTERED COPAYMENT ASSISTANCE TO 68,399 QUALIFIED PATIENTS THROUGH 47 ASSISTANCE FUNDS AVAILABLE THROUGH THE CO-PAY RELIEF PROGRAM. THE PROGRAM STAFF FIELDED 170,107 TELEPHONE CALLS AND PROCESSED CLAIMS TOTALING OVER $267,447,528 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 600,000 INDIVIDUALS ALLOCATING NEARLY $1.9 BILLION DOLLARS IN CO-PAYMENT AWARDS. HEALTH EQUITY INITIATIVE, COMMUNITY OUTREACH & PATIENT ENGAGEMENT THE FOUNDATION PROMOTES HEALTH EQUITY BY ADDRESSING SOCIAL NEEDS GAPS AND SOCIAL DETERMINANTS OF HEALTH AT THE INDIVIDUAL, COMMUNITY, AND NATIONAL LEVEL. BROAD LOCAL AND NATIONAL OUTREACH EVENTS ADDRESS POPULATIONS WITH LOW SOCIO-ECONOMIC CHARACTERISTICS AND FOCUS ON COMMUNITIES WITH HIGH DISEASE MORBIDITY AND PREMATURE MORTALITY FROM THE LEADING CAUSES OF DEATH. SPECIFIC ACTIVITIES FOCUS ON TACKLING SOCIAL/FINANCIAL SUPPORT NEEDS AND MITIGATING BARRIERS THAT IMPACT ACCESS TO HEALTH SERVICES. IN FY2021/2022, 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. WORK UNDER THE CURRENT COOPERATIVE AGREEMENT FOCUSES ON THE FOLLOWING: O ADOPTION OF CLEAR INDOOR POLICIES AMONG BLUE COLLAR WORKSITES IN KENTUCKY. O LINKAGE TO MAMMOGRAPHY SCREENING AND BREAST CANCER TREATMENT FOR LOW-INCOME WOMEN IN TENNESSEE. O INTEGRATION OF BRIEF CESSATION COUNSELING IN CLINICAL WORKFLOW IN FQHCS IN SOUTH CAROLINA. O BUILDING CAPACITY OF STATE COMPREHENSIVE CANCER PROGRAM TO EXPAND HUMAN PAPILLOMAVIRUS (HPV) VACCINATION AMONG POPULATIONS WITH LOW SES CHARACTERISTICS, HISPANICS, AND GEOGRAPHICALLY DISPARATE POPULATIONS. O ELEVATING THE IMPACT OF COVID-19 PANDEMIC THROUGH THE LENS OF INCREASED RISKS FOR TOBACCO USE; DECREASED TOBACCO CESSATION AND LATE STATE CANCER DIAGNOSIS RESULTING FROM BARRIERS TO CANCER EARLY DETECTION AND SCREENING IN FY2021/2022, SMHN IN COLLABORATION WITH GEOGRAPHIC HEALTH EQUITY ALLIANCE AND NUESTRAS VOCES (PART OF A CONSORTIUM SUPPORTED BY CDC'S NETWORKING2SAVE PROGRAM) COMPLETED COHORT ONE OF THE TRI-NETWORKS HPV VACCINATION LEARNING COLLABORATIVE. 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 SEVEN STATES (FLORIDA, NEW JERSEY, MICHIGAN, OHIO, GEORGIA INDIANA, AND TENNESSEE) PARTICIPATED IN THREE VIRTUAL LEARNING SESSIONS, ONE-ON-ONE TECHNICAL ASSISTANCE SESSIONS AND AN INTERACTIVE POLICY SESSION. THIS PROJECT WAS SELECTED AND PUBLISHED AS A SUCCESS STORY, NATIONAL NETWORKS COME TOGETHER TO HELP PREVENT HPV-RELATED CANCERS, BY CDC DIVISION OF CANCER PREVENTION AND CONTROL-NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM. 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). 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 TO HELP INFORM PAF'S BLUEPRINT FOR ACHIEVING HEALTH EQUITY. IN FY2021/2022, THE PAF'S HEALTH EQUITY AFFINITY GROUP (HEAG) PARTICIPATED IN THREE PLANNING SESSIONS TO DEVELOP THE STRATEGIC FRAMEWORK THAT WILL GUIDE INTERNAL ORGANIZATIONAL CHANGE STRATEGIES TO ADVANCE EQUITY. THE FRAMEWORK WAS DESIGNED AROUND THE THREE STRATEGIC FOCUSED AREAS IDENTIFIED BY THE HEAG: 1). EDUCATION AND LEARNING; 2). CULTURE AND VALUE; AND 3). COMMUNICATIONS AND MESSAGING. THE NEXT PHRASE IN THE PROCESS IS THE ESTABLISH WORKSTREAMS, TO FINALIZE THE DEVELOPMENT OF KEY ACTIVITIES AND PROGRESS BENCHMARKS TO BE IMPLEMENTED OVER THE NEXT THREE YEARS. THE CONTENT DEVELOPED WILL COMPRISE PAF'S BLUEPRINT FOR ACHIEVING HEALTH EQUITY. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (B) THE COMMUNITY ENGAGEMENT MODEL USED BY PAF, EVEN IN A CONTINUED VIRTUAL ENVIRONMENT, CONTINUED TO ALLOW PAF TO REMAIN CONNECTED WITH STAKEHOLDERS SUPPORTING LIMITED RESOURCES INDIVIDUALS IN COMMUNITIES ACROSS THE COUNTRY. THROUGH VIRTUAL AND RECENT IN-PERSON ACTIVITIES, PAF HAS BEEN REACH 1430 INDIVIDUALS WITH INFORMATION ABOUT RESOURCES AND SERVICES TO SUPPORT PERSONS LIVING WITH CHRONIC AND COMPLEX HEALTH CONDITIONS THROUGH SIX OUTREACH EVENTS. OUTREACH EVENTS INCLUDED: 2021 GLOBAL GENES PATIENT ADVOCACY SUMMIT; THE INAUGURAL 2021 RARE DISEASE EQUITY SUMMIT; THE 2022 MEMPHIS LIVE! AFRICAN AMERICAN BREAST CANCER SUMMIT: 2022 GETTING OUR FAIR SHARE CONFERENCE TO END DISPARITIES; AND THE NATIONAL COMPREHENSIVE CANCER NETWORK (NCCN) ANNUAL MEETING. PAF, HE STAFF CONTINUES TO PROVIDE GUIDANCE ON NATIONAL AGENDAS TO STIMULATE AND GUIDES CONVERSATIONS TO ADVANCE HEALTH EQUITY. SPECIFICALLY, STAFF HAVE CONTRIBUTED TO THE DEVELOPMENT OF TWO MANUSCRIPTS, ONE FOCUSED ON ELEVATING ISSUES AROUND FOOD INSECURITY AND THE OTHER ON WOMEN AND LUNG CANCER. HE STAFF SERVED AS A REVIEWER FOR THE CURES WITHIN REACH-DIVERSITY, EQUITY AND INCLUSION PROPOSALS AND BRISTOL MYERS SQUIBB FOUNDATION-DIVERSITY IN CLINICAL TRIALS CAREER DEVELOPMENT PROGRAM. ADDITIONALLY, HE STAFF WAS ENGAGED IN CURRICULUM DEVELOPMENT FOR THE BRISTOL MYERS SQUIBB FOUNDATION'S-DIVERSITY IN CLINICAL TRIALS COMMUNITY ORIENTED CLINICAL TRIALIST CURRICULUM COMMITTEE. LASTLY, STAFF IS ACTIVELY ENGAGED IN BUILDING CURRICULUM FOR HEALTHCARE SYSTEMS FOCUSED ON TRUST AND TRUSTWORTHINESS. IN MAY 2022, EVP HEALTH EQUITY, SHONTA CHAMBERS WAS AWARDED THE PARTNERS IN CANCER CARE AWARD ALONG WITH HER CO-CHAIR DR. ROBERT WINN FOR THEIR WORK WITH THE ELEVATING CANCER EQUITY WORKGROUP (AN INITIATIVE OF THE NCCN, NATIONAL MINORITY QUALITY FORUM AND ACS CANCER ACTION NETWORK). HE STAFF HAVE EXPANDED ENGAGEMENT WITH THE RARE DISEASE COMMUNITY. THE EVP OF HEALTH EQUITY AND COMMUNITY ENGAGEMENT CO-CHAIRS THE RARE DISEASE DIVERSITY COALITION (RDDC)-PATIENT AND CAREGIVER WORKGROUP. THROUGH THIS WORKGROUP, SHE WILL LEAD 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. PATIENT EDUCATION & EMPOWERMENT LASTLY, PAF EXTENDS THE IMPACT OF ITS DIRECT PATIENT SERVICES THROUGH THE DEVELOPMENT AND DELIVERY OF PATIENT EDUCATION AND EMPOWERMENT TOOLS FOCUSED ON PROVIDING ACTIONABLE ADVICE AND GUIDANCE TO HEALTHCARE CONSUMERS TO IMPROVE THEIR EVERYDAY EXPERIENCE WITH INSURANCE AND TO ENCOURAGE PATIENT'S ENGAGEMENT IN THE HEALTHCARE SYSTEM. PAF MODELS ITS EDUCATIONAL ACTIVITIES ON THE CONVERSATIONS WHICH TAKE PLACE BETWEEN CASE MANAGERS, PATIENTS, AND THEIR CAREGIVERS, FOCUSING ON THOSE TOPICS FOR WHICH PATIENTS MOST FREQUENTLY SEEK OUR HELP. EACH YEAR, PAF CREATES, MAINTAINS, AND DISTRIBUTES A WIDE ARRAY OF PATIENT EDUCATION MATERIALS AND ONLINE TOOLS, IN PRINTED AND ELECTRONIC FORM. PAF'S EDUCATIONAL PORTFOLIO COVERS A BROAD RANGE OF TOPICS, AVAILABLE IN A VARIETY OF FORMATS, TO MEET THE NEEDS AND PREFERENCES OF MULTIPLE AUDIENCES, INCLUDING PATIENTS, CAREGIVERS AND PROFESSIONALS INCLUDING THOSE WHO INTERACT DIRECTLY WITH THE FOUNDATION REQUESTING ASSISTANCE AS WELL AS THE PUBLIC VISITING OUR WEBSITE AND CONNECTING WITH PAF. PAF'S PATIENT EDUCATION MATERIALS ARE ROUTINELY UTILIZED BY OTHER ORGANIZATIONS AND FACILITIES WHO SHARE THEM WITH THEIR PATIENTS. THE FOUNDATION MAINTAINS AN EXTENSIVE LIBRARY OF PAF AUTHORED PATIENT EDUCATIONAL PUBLICATIONS, ON-DEMAND WEBINARS, LEARN FROM THE EXPERT TRAINING SERIES, INTERACTIVE RESOURCE TOOLS AND ALL OF WHICH ARE AVAILABLE FREE OF CHARGE TO PATIENTS. DURING FY2020/ 2021, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM PUBLISHED 45 NEW, TRANSLATED, OR REVISED PUBLICATIONS AND PRODUCED 1 EDUCATIONAL VIDEO AND 10 EDUCATIONAL WEBINARS. PAF ALSO SUPPORTED 4 MULTI-YEAR EDUCATIONAL PROJECTS INCLUDING HEALTH INSURANCE LITERACY, MIGRAINE MATTERS AND MATTERS OF THE HEART. PAF'S PATIENT EDUCATION AND EMPOWERMENT DEPARTMENT RECEIVED 2 AWARDS NATIONAL THIS PAST YEAR. PAF NATIONAL FINANCIAL RESOURCE DIRECTORY O USERS COMPLETED 33,340 ELECTRONIC SEARCHES FOR RESOURCES O 811,395 MATCHING RESOURCES WERE PROVIDED TO USERS O 38 RESOURCES ADDED, 548 RESOURCES UPDATED, 53 RESOURCES DEACTIVATED BY PAF STAFF O USERS SEARCHED FOR FINANCIAL ASSISTANCE CATEGORIES MOST FREQUENTLY. THE TOP 8 CATEGORIES (IN ORDER OF HIGHEST SEARCHES) INCLUDE: MEDICAL BILLS & GENERAL FINANCIAL HELP, HOUSING & LODGING, CHARITABLE COPAYMENT ASSISTANCE, TRANSPORTATION, UTILITIES, DENTAL CARE, AFFORDABLE OPTIONS FOR CARE, FOOD & NUTRITION. PATIENT EDUCATION CONTENT AWARDS O RECEIVED THE BRONZE MEDAL FOR HEALTH INSURANCE DENIALS AND APPEALS: DON'T TAKE NO FOR AN ANSWER A PAF TRAINING SERIES IN THE DIGITAL HEALTH MEDIA/PUBLICATIONS VIDEO SERIES O MERIT WINNER FOR ENGAGING WITH INSURERS: APPEALING A DENIAL IN THE DIGITAL HEALTH MEDIA/PUBLICATIONS BOOKLET/BROCHURE CATEGORY NEW PATIENT EDUCATION PUBLICATIONS AND TOOLS O HOW TO SAVE MONEY ON MEDICAL BILLS PUBLICATION O A GUIDE TO NAVIGATING THE DISABILITY PROCESS PUBLICATION O DISABILITY TRAINING FLYER PUBLICATION O MEDICARE TRAINING FLYER PUBLICATION O THE SPOTLIGHT OCTOBER 2021 PUBLICATION: SAVING MONEY O THE SPOTLIGHT NOVEMBER 2021 PUBLICATION: OPEN ENROLLMENT O THE SPOTLIGHT-DECEMBER 2021 PUBLICATION: DENIED CLAIMS O THE SPOTLIGHT JANUARY 2022 PUBLICATION: HEALTH INSURANCE PLANS AND DEDUCTIBLES O THE SPOTLIGHT FEBRUARY 2022 PUBLICATION: MANAGING CARDIOVASCULAR RISKS O THE SPOTLIGHT MARCH 2022 PUBLICATION: WOMEN'S HEALTH RESOURCES O THE SPOTLIGHT APRIL 2022 PUBLICATION: DISABILITY O THE SPOTLIGHT MAY 2022 PUBLICATION: EMERGENCY SERVICES O THE SPOTLIGHT JUNE 2022 PUBLICATION: MIGRAINE MATTERS O MARK YOUR CALENDAR: OPEN ENROLLMENT IS COMING PUBLICATION O A USER'S GUIDE TO HEALTH INSURANCE MARKETPLACES PUBLICATION O MIGRAINE AND SOCIAL SECURITY DISABILITY PUBLICATION O AFTER THE APPLICATION: SOCIAL SECURITY BENEFITS FOR MIGRAINE PATIENTS PUBLICATION O SURPRISE MEDICAL BILLS: FREQUENTLY ASKED QUESTIONS PUBLICATION O FINDING AND SELECTING INSURANCE (COVERAGE ACCESS GUIDE) PUBLICATION O FINDING AND SELECTING INSURANCE (COVERAGE ACCESS GUIDE) PUBLICATION (SPANISH) O UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS TIP SHEET PUBLICATION O UNDERSTANDING YOUR HEALTH INSURANCE POLICY DOCUMENTS TIP SHEET PUBLICATION (SPANISH) O HOW HEALTH INSURANCE WORKS TIP SHEET PUBLICATION O HOW HEALTH INSURANCE WORKS TIP SHEET PUBLICATION (SPANISH) O 10 TIPS TO HELP YOU GET THE MOST OUT OF YOUR HEALTH INSURANCE TIP SHEET PUBLICATION O 10 TIPS TO HELP YOU GET THE MOST OUT OF YOUR HEALTH INSURANCE TIP SHEET PUBLICATION (SPANISH) O YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION O YOUR BENEFITS EXPLAINED TIP SHEET PUBLICATION (SPANISH) O HEALTH INSURANCE NETWORKS THE INS & OUTS TIP SHEET PUBLICATION O HEALTH INSURANCE NETWORKS THE INS & OUTS TIP SHEET PUBLICATION (SPANISH) O HOW DO I GET HEALTH INSURANCE TIP SHEET PUBLICATION O HOW DO I GET HEALTH INSURANCE TIP SHEET PUBLICATION (SPANISH) O HOW TO AVOID FINANCIAL STRESS TIP SHEET PUBLICATION O HOW TO AVOID FINANCIAL STRESS TIP SHEET PUBLICATION (SPANISH) O WHAT IS HEALTH INSURANCE TIP SHEET PUBLICATION O WHAT IS HEALTH INSURANCE TIP SHEET PUBLICATION (SPANISH) O HEALTH INSURANCE LITERACY PROJECT WEBINAR SERIES 8 POWERPOINT SLIDE PRESENTATIONS (SPANISH) O HEALTH INSURANCE LITERACY SERIES FLYER PUBLICATION O WEBINAR PRESENTATION: MAKING YOUR INSURANCE WORK FOR YOU: MAXIMIZING YOUR COVERAGE AND GETTING THE MOST OUT OF YOUR HEALTH INSURANCE BENEFITS FOR PATIENTS FOR THE ALLIANCE TO CURE CAVERNOUS MALFORMATION O SELECTING HEALTH INSURANCE WEBINAR O HOW TO USE YOUR HEALTH INSURANCE WEBINAR O INTERACTIVE TRAINING SERIES: MEDICARE ELIGIBILITY AND ENROLLMENT WEBINAR TRAINING SERIES FOR CASE MANAGERS - MODULE 1: MEDICARE BASICS - MODULE 2: ELIGIBILITY - MODULE 3: SELECTING YOUR PLAN - MODULE 4: PART D SELECTION - MODULE 5: ENROLLMENT - MODULE 6: MEDICARE COVERAGE - MODULE 7: ADDITIONAL MEDICARE PROGRAMS, PLANS, AND SAVINGS |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (C) DURING FY2021/2022, MEMBERS OF THE FOUNDATION'S STAFF 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 VIRTUAL EVENTS WERE STILL HIGHLY EFFECTIVE AND WELL ATTENDED, IN-PERSON EVENTS BEGAN RETURNING MID-YEAR WITH GROWING ATTENDANCE RATES. THIS PROVIDED PAF THE OPPORTUNITY TO CONTINUE REACHING A BROADER AUDIENCE THROUGH VARIOUS SOURCES AND CONTINUE TO INCREASE PUBLIC AWARENESS OF PAF RESOURCES TO HOMEBOUND INDIVIDUALS, AS WELL AS EVENT ATTENDEES. IN FY2021/2022, THE FOUNDATION INCREASED ITS ATTENDED OUTREACH EVENTS TO 122 AND DISTRIBUTED 2200 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 2021-2022 INCLUDED PARTNERSHIPS ON FOUR RESEARCH INTERVENTION PROJECTS WITH ACADEMIC AND PARTNERS INCLUDING: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, EMORY UNIVERSITY, FRED HUTCHINSON CANCER RESEARCH CENTER (2). THESE PROJECTS UTILIZED 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 ABOUT THE PATIENT EXPERIENCE DURING THE EARLY-MID STAGES OF THE COVID-19 PANDEMIC INCLUDING: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, UNIVERSITY OF ALABAMA BIRMINGHAM, MD ANDERSON, AND ECOG-ACRIN CANCER RESEARCH GROUP. FIVE ARTICLES WERE PUBLISHED IN PEER REVIEWED JOURNALS AND NINE ABSTRACTS PRESENTED AT NATIONAL MEETINGS. PAF'S RESEARCH EVALUATION AND PATIENT EXPERIENCE TEAM WAS ALSO INVOLVED IN A PATIENT-CENTERED PROJECT TO SUPPORT THE FIELD IN DESIGNING MORE PATIENT-CENTERED DECISION SUPPORT TOOLS AND THREE PATIENT ENGAGEMENT PROJECTS WHERE PAF SERVES/D AS THOUGHT LEADERS AND CONTENT EXPERTS, AS WELL AS FACILITATION OF OUTREACH AND COLLECTION OF THE PATIENT EXPERIENCE ON A NUMBER OF TOPICS INCLUDING TWO PATIENT CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) FUNDED PROJECTS: "PAVING A PATHWAY TO ENGAGE UNDERSERVED POPULATIONS IN RESEARCH AND THROUGH OUR "COVID-19 LEARNING COMMUNITY". 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 (PATIENT-DRIVEN RESEARCH COMMUNITIES (PDRC) LEARNING NETWORK) AND THE UNIVERSITY OF CALIFORNIA AT SAN FRANCISCO (SIREN: SOCIAL INTERVENTIONS RESEARCH AND EVALUATION NETWORK TO PROVIDE INFRASTRUCTURE AND SUPPORT FOR PATIENT ENGAGEMENT). 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 OUR SCHOLARSHIP PROGRAM, A PROMISE OF HOPE AFFAIR, WAS HELD AS A HYBRID EVENT ON SEPTEMBER 18, 2021. THROUGH THIS EVENT, GENEROUS DONORS TO PAF HELPED MAINTAIN THE EXISTING SCHOLARSHIPS AND EXPAND THE NUMBER OF STUDENTS SUPPORTED THROUGH THE SCHOLARSHIP FOR SURVIVORS PROGRAM FROM THIRTY-ONE IN THE 2021-2022 ACADEMIC YEAR TO FORTY FOR THE 2022-2023 ACADEMIC YEAR. TO DATE, THE FOUNDATION HAS AWARDED 155 SCHOLARSHIPS TOTALING OVER $943,000. PUBLIC SUPPORT PERCENTAGE THE FOUNDATION'S CUMULATIVE PUBLIC SUPPORT PERCENTAGE THROUGH JUNE 30, 2022, IS 20.32%. 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 ALL ITS PROGRAMS FROM A MULTITUDE OF SOURCES INCLUDING GOVERNMENTAL AGENCIES, OTHER PUBLIC CHARITIES, CORPORATIONS AND FROM THE GENERAL PUBLIC. 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, GOVERNMENT, 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 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. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (D) 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 AND EMPOWERMENT 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 FIVE (5) 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 FY2021/2022, THE PROGRAM DEVELOPMENT STAFF SUBMITTED 1217 GRANTS AND FACILITATED FUNDRAISING CAMPAIGNS TO THE PUBLIC. OVER THE LAST FIVE YEARS, PAF'S MISSION HAS BEEN SUPPORTED BY 2196 DONORS ACROSS ALL SOURCES OF CHARITABLE DONATIONS. IN FY2021/2022, PAF RECEIVED CONTRIBUTIONS FROM 617 DONORS INCLUDING SUPPORT FROM INDIVIDUALS, CORPORATIONS AND CORPORATE FOUNDATIONS, GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. FURTHER IN 2021/2022, PAF RECEIVED DONATIONS OF SUPPORT FROM THIRTY-NINE (39) NON-PROFIT ORGANIZATIONS, ALL 501C3 PUBLIC CHARITIES AND PRIVATE FOUNDATIONS, OF WHICH THIRTEEN (13) WERE NEW DONORS INCLUDING AMERICAN DIABETES ASSOCIATION, BERNARD MCDONOUGH FOUNDATION, INC., CHARITIES AID FOUNDATION OF AMERICA, FISHMAN FAMILY FOUNDATION, NATIONAL OVARIAN CANCER COALITION, SEEDS OF FAITH, INC., AND WINSTON-SALEM FOUNDATION TO NAME A FEW. THIS REPRESENTS A 18% GROWTH IN SUPPORT FROM NON-PROFIT ORGANIZATIONS OVER THE PRIOR FY. 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 FY2021/2022, PAF ADDED, EXPANDED, AND MAINTAINED SEVERAL KEY PATIENT PROGRAMS WITH THE SUPPORT OF OTHER NON-PROFIT ORGANIZATIONS. PAF LAUNCHED 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. ZERO: THE END OF PROSTATE CANCER CONTINUED ITS SUPPORT OF THE ZERO:360 CASE MANAGEMENT PROGRAM FOR PROSTATE CANCER PATIENTS AND EXPANDED THEIR SUPPORT WITH THE ZERO DRIVE PROGRAM, ADDING GEORGIA, NORTH CAROLINA, AND SOUTH CAROLINA TO PROVIDE TRANSPORTATION GRANTS TO 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 TENTH CONSECUTIVE YEAR. PAF ALSO RECEIVED FUNDING FROM SENTARA CARES, A PROGRAM WITH SENTARA HOSPITAL SYSTEMS TO PROVIDE GENERAL CASE MANAGEMENT SUPPORT. PAF LAUNCHED TWO NEW FINANCIAL AID FUNDS TO ASSIST OVARIAN CANCER PATIENTS WITH SUPPORT FROM THE NATIONAL OVARIAN CANCER COALITION (NOCC). THE MAHAN FOUNDATION PROVIDED CONTINUED SUPPORT FOR THE MAHAN FOUNDATION FINANCIAL AID FUND SUPPORTING PATIENTS WITH ACUTE MYELOID LEUKEMIA (AML) AND 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. PAF ALSO SECURED FUNDING FOR ITS PATIENT EDUCATIONAL PROGRAM, "THE LIGHTHOUSE SERIES" FROM THE TRUIST FOUNDATION TO DEVELOP EDUCATIONAL MATERIALS ON FINANCIAL EDUCATION. THE AMERICAN DIABETES ASSOCIATION NEWLY SUPPORTED THE DIABETES CO-PAY RELIEF FUND TO ASSIST DIABETIC PATIENTS WITH THE COSTS OF THEIR MEDICATIONS AND INSURANCE. 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: PANDEMIC RESPONSE, ONCOLOGY, NEUROLOGY, CARDIOLOGY, VIROLOGY, IMMUNOLOGY, PULMONOLOGY, AND RARE DISEASE. IN FY2021/2022, 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 100 DISEASE FUNDS AS OF THE END OF 2022. 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. 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 HAS ENGAGED THE SERVICES OF ARENT FOX, LLP, WASHINGTON, DC, AS ITS REGULATORY COUNSEL. ARENT FOX 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: |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (E) 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 2021 AND THE ENTIRE PAF STAFF RECEIVED THE ANNUAL TRAINING IN SEPTEMBER AND OCTOBER 2021. THESE TRAININGS 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 THE 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 2021, 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 ALLIANCE FOR AGING RESEARCH 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 BREAST CANCER RESEARCH FOUNDATION OF ALABAMA O BRIGHT FUNDS FOUNDATION O CAN DO MULTIPLE SCLEROSIS 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 ECOG-ACRIN MEDICAL RESEARCH FOUNDATION, INC 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 ICER O IOWA CANCER CONSORTIUM O JOURNEY MINISTRIES O JUSTGIVE O KINGS CARE FOUNDATION O LEUKEMIA & LYMPHOMA SOCIETY O LIVESTRONG FOUNDATION O LL12 LLC O LUNGEVITY FOUNDATION 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 SCHWAB CHARITABLE FUND O T. ROWE PRICE PROGRAM FOR CHARITABLE GIVING O THE BENEVITY COMMUNITY IMPACT FUND O THE DONNA FOUNDATION O THE WISHLIST FOUNDATION O TIAA CHARITABLE INC. O UNITED WAY OF THE CAPITAL REGION O UNITED WAY SALT LAKE O VANGUARD CHARITABLE O WINSTON-SALEM FOUNDATION O YOURCAUSE LLC O ZERO - THE END OF PROSTATE CANCER GOVERNMENTAL AGENCIES: O CENTERS FOR DISEASE CONTROL AND PREVENTION CORPORATIONS AND CORPORATE FOUNDATIONS: O 215 DONATING CORPORATIONS AND CORPORATE FOUNDATIONS O 76 MADE DONATIONS IN FY2021/2022 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 BUTLER CLASS OF 66 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, IRVINE O UNIVERSITY OF CALIFORNIA, SAN FRANCISCO O UNIVERSITY OF MINNESOTA GENERAL PUBLIC: O RECEIVED MEMORIAL, HONORARY, AND GENERAL SUPPORT AND CONTRIBUTIONS FROM OVER 490 INDIVIDUALS IN FY2021/2022. O RECEIVED DONATIONS FROM OVER 1862 INDIVIDUALS OVER THE PAST 5 YEARS IN FY2021/2022, PAF RECEIVED CONTRIBUTIONS FROM 617 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 17 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 GERMANE TO THE MISSION OF PAF. THE PAF BOARD OF DIRECTORS ASSESSES THE ORGANIZATIONS PERFORMANCE AND EFFECTIVENESS AND DETERMINES FUTURE ACTIONS REQUIRED, IF ANY, TO ACHIEVE ITS MISSION. 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 TO BE INDEPENDENT PER THE IRS DEFINITION OF INDEPENDENCE. ALL VOTING MEMBERS OF PAF'S EXECUTIVE BOARD OF DIRECTORS WERE ALL INDEPENDENT IN FY2021/2022. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE O (F) 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 AND, AS REQUIRED. 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 FY2021/2022 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 FY2021/2022, PAF SERVED OVER 178,000 PEOPLE, LIVING IN ALL 50 STATES AND US TERRITORIES, SUFFERING WITH OVER 700 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/2021ANNUALIMPACTREPO RTINTERACTIVE_FINAL-1.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, 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. PAF UTILIZES VARIOUS PROMOTIONS AND EDUCATION ACTIVATES 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: O 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 O DEVELOPMENT AND MAINTENANCE OF PAF AND CPR WEBSITES; INCLUSIVE OF EXTENSIVE PATIENT EDUCATION MATERIALS AND RESOURCE DIRECTORIES/ONLINE TOOLS. O ROUTINE PARTICIPATION IN LOCAL, REGIONAL AND NATIONAL OUTREACH EVENTS; INCLUDING EXHIBITING AT CONFERENCES, SPEAKING ENGAGEMENTS, AND TRAINING SESSIONS FOR OTHER AGENCIES. O ROUTINE DELIVERY OF "THE SPOTLIGHT", AN EDUCATIONAL SERIES DESIGNED TO ADDRESS CONCEPTS RELATED TO VARIOUS HEALTHCARE/INSURANCE AND/OR ENTITLEMENT PROGRAMS, O DEVELOPMENT AND RELEASE OF PAF TOPIC-BASED STORY BOARDS O AD PLACEMENTS ON SOCIAL CHANNELS INCLUDING FACEBOOK, SPOTIFY, AND IHEART RADIO O PUBLISHING AND DISSEMINATION OF THE PAF ANNUAL IMPACT REPORT O LINKS FROM AND TO VARIOUS NON-PROFIT PATIENT ORGANIZATIONS WEBSITES AND PAF'S WEBSITES AND ONLINE RESOURCE TOOLS. O 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. O DEVELOPMENT OF THE PATIENT PARTNER FOR EQUITY PROGRAM AND DISTRIBUTION OF ASSOCIATED NEWSLETTER O DISTRIBUTION OF PRESS RELEASES PUBLICLY ANNOUNCING THE ADDITION OF NEW PATIENT PROGRAMS AND/OR EXPANSION OF EXISTING PROGRAMS. O 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, INCLUDING 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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