Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for 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 | |||||
|
Total |
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Calendar year (or fiscal year beginning in) ![]() |
(a) 2014 | (b) 2015 | (c) 2016 | (d) 2017 | (e) 2018 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 59,477,193 | 92,569,903 | 183,610,619 | 368,892,961 | 234,013,794 | 938,564,470 |
| 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 | 59,477,193 | 92,569,903 | 183,610,619 | 368,892,961 | 234,013,794 | 938,564,470 |
| 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).. | 750,969,468 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 187,595,002 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2014 | (b) 2015 | (c) 2016 | (d) 2017 | (e) 2018 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 59,477,193 | 92,569,903 | 183,610,619 | 368,892,961 | 234,013,794 | 938,564,470 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 402,970 | 713,599 | 1,145,492 | 2,946,894 | 5,514,479 | 10,723,434 |
| 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 | 949,287,904 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2014 | (b) 2015 | (c) 2016 | (d) 2017 | (e) 2018 | (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) 2014 | (b) 2015 | (c) 2016 | (d) 2017 | (e) 2018 | (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 in 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): |
|||||
| 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 1-1/2% 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 .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 | ||
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
||
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | ||
| 4 Amounts paid to acquire exempt-use assets | ||
| 5 Qualified set-aside amounts (prior IRS approval required) | ||
| 6 Other distributions (describe in Part VI). See instructions | ||
| 7Total annual distributions. Add lines 1 through 6. | ||
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
||
| 9 Distributable amount for 2018 from Section C, line 6 | ||
| 10 Line 8 amount divided by Line 9 amount | ||
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2018 |
(iii) Distributable Amount for 2018 |
|
|---|---|---|---|---|
|
1
Distributable amount for 2018 from Section C, line 6 |
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|
2
Underdistributions, if any, for years prior to 2018 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2018: | ||||
| a From 2013....... | ||||
| b From 2014....... | ||||
| c From 2015....... | ||||
| d From 2016....... | ||||
| e From 2017....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2018 distributable amount | ||||
|
i
Carryover from 2013 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from 3f. | ||||
| 4Distributions for 2018 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2018 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from 4. | ||||
|
5
Remaining underdistributions for years prior to 2018, 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 2018. 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 2019. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2014...... | ||||
| b Excess from 2015..... | ||||
| c Excess from 2016..... | ||||
| d Excess from 2017..... | ||||
| e Excess from 2018..... | ||||
| Facts And Circumstances Test |
|---|
| PATIENT ADVOCATE FOUNDATIONSECTION 170(B) (1) (A) ORGANIZATIONFACTS & CIRCUMSTANCES TEST; FY2016/2017PATIENT 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. 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 AND ONLINE INTERACTIVE FORMATS. THE FOUNDATION ALSO ADMINISTERS THE CO-PAY RELIEF PROGRAM (CPR) THAT PROVIDES 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 OVER 136,000 PATIENTS IN FY2018/2019 AND HAS PROVIDED HELP AND ASSISTANCE TO OVER 1.2 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 OVER 23 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 24,594 INDIVIDUALS IN FY2018/2019. THESE PATIENTS ARE LIVING WITH 613 UNIQUE DISEASES, INCLUDING OVER 200 THAT ARE CONSIDERED RARE DISEASES, AND REQUESTED ASSISTANCE WITH AN AVERAGE OF TWO ISSUES THAT WERE CREATING OBSTACLES TO CARE. ON AVERAGE, CASE MANAGERS MADE 16 CONTACTS ON BEHALF OF EACH CASE TO RELEVANT STAKEHOLDERS TO BRING RESOLUTION TO THE PATIENT'S ACCESS ISSUES. THIS TRANSLATES TO NEARLY 415,000 UNIQUE CONTACTS ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT INTERVENTION SERVICES. PAF ALSO PROVIDED NEARLY 30,000 PATIENT EDUCATION PUBLICATIONS TO THE PATIENTS SERVED BY CASE MANAGEMENT. PAF PROVIDE THESE SERVICES THROUGH A COMPLIMENT OF 24 UNIQUE PROGRAMS.DURING FY2018/2019, PAF ADMINISTERED A SUITE OF SEVEN SMALL GRANT PROGRAMS, REFERRED TO AS FINANCIAL AID FUNDS, EACH OF WHICH PROVIDE FINANCIAL ASSISTANCE TO QUALIFIED PATIENTS FOR OUT OF POCKET AND COST OF LIVING COSTS PATIENTS STRUGGLE TO MANAGE WHEN DEALING WITH A CHRONIC OR CRITICAL DISEASE. IN FY2018/2019, PAF SUCCESSFULLY PROVIDED ONE-TIME SMALL GRANTS TO 1,646 PATIENTS, TOTALING $1,011,400 IN FINANCIAL RELIEF. THE SMALL GRANTS RANGE FROM $300-$1000 PER PATIENT AND ARE DESIGNED TO DEFRAY THE OUT OF POCKET AND COST OF LIVING EXPENSES, INCLUDING TRANSPORTATION, LODGING, NUTRITIONAL NEEDS, CHILDCARE AND BURIAL EXPENSES, FACED BY PATIENTS AS A RESULT 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" 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" MULTIPLE MYELOMA TRANSPORTATION FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH MULTIPLE MYELOMA" TRANSPORTATION FINANCIAL AID FUND: SERVING PATIENTS DIAGNOSED WITH METASTATIC MELANOMA OR METASTATIC LUNG CANCERLAUNCHED 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. 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 WILL 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.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 FY2018/2019, PAF'S CO-PAY RELIEF PROGRAM EXPANDED ITS PROGRAM IMPACT THROUGH THE ADDITION OF FIVE (5) NEW FUNDS, ASSISTING PATIENTS THROUGH THIRTY TWO (32) DISEASE SPECIFIC FUNDS INCLUDING ASTHMA, BLADDER CANCER, BREAST CANCER, CANCER GENETIC AND GENOMIC TESTING CERVICAL CANCER, CHRONIC PAIN, ELECTROLYTE IMBALANCE, HEPATITIS B, HEPATITIS C, HIV, AIDS AND PREVENTION, HOMOZYGOUS FAMILIAL HYPERCHOLESTEROLEMIA, INHERITED OR ACQUIRED LIPODYSTROPHY, METASTATIC BREAST CANCER, METASTATIC COLORECTAL CANCER, METASTATIC GASTRIC CANCER, METASTATIC PROSTATE CANCER, MULTIPLE MYELOMA, MULTIPLE SCLEROSIS, MYELODYSPLASTIC SYNDROME, NON-SMALL CELL LUNG CANCERS (NSCLC), OSTEOPOROSIS, OVARIAN CANCER, PERIODIC PARALYSIS, PERIPHERAL VASCULAR DISEASE, PROSTATE CANCER, PULMONARY FIBROSIS, PULMONARY HYPERTENSION, RENAL CELL CARCINOMA, RHEUMATOID ARTHRITIS, SKIN CANCER, ULCERATIVE COLITIS AND UTERINE CANCERS. 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.SEE CONTINUATION IN SCHEDULE O. |
| Return Reference | Explanation |
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| 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 4C | CONTINUATION OF EXPLANATION OF PROGRAM SERVICES FROM PART III, LINE 4C THE FOUNDATION WAS SUCCESSFUL IN SECURING A NEW FIVE YEAR 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 IS FOCUSED ON IMPLEMENTING EVIDENCE-BASED STRATEGIES TO REDUCE TOBACCO AND CANCER RELATED DISPARITIES AMONG POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS. UNDER THE PREVIOUS AWARD, THE NETWORK SUCCESSFULLY IMPLEMENTED PILOT INTERVENTIONS AND PROVIDED TECHNICAL ASSISTANCE IN TENNESSEE, KENTUCKY, VIRGINIA, SOUTH CAROLINA, WEST VIRGINIA, AND TEXAS, AND WITH THE COLLABORATION OF THE AMERICAN LUNG ASSOCIATION, DESIGNED AND IMPLEMENTED THE SMHN TOBACCO CESSATION MARKETPLACE PROJECT, WHICH WAS PILOTED IN 10 STATES TO IMPLEMENT BRIEF TOBACCO CESSATION COUNSELING INTO THE AFFORDABLE CARE ACT (ACA) MARKETPLACE ANNUAL INSURANCE ENROLLMENT PROCESS. FOR ITS WORK IN EDUCATING YOUNG WOMEN ABOUT GYNECOLOGIC CANCERS AND THE HUMAN PAPILLOMAVIRUS (HPV) VACCINATION, SMHN WAS ONE OF THE FIRST NETWORKS TO HAVE A SUCCESS STORY PUBLISHED BY THE CDC DCPC. UNDER THE NEW COOPERATIVE AGREEMENT, SMHN WILL IMPLEMENT EVIDENCE-BASED STRATEGIES TO 1) IMPROVE THE CAPACITY OF CDC-FUNDED STATE TOBACCO AND COMPREHENSIVE CANCER CONTROL PROGRAMS IN COLLECTION AND USE OF DATA SPECIFIC TO POPULATIONS WITH LOW SES CHARACTERISTICS; 2) STRENGTHEN RELATIONSHIPS BETWEEN ORGANIZATIONS SERVING LOW SES POPULATIONS, CDC-FUNDED STATE PROGRAMS, AND OTHER FUNDED NETWORKS; 3) INCREASE THE DELIVERY OF EVIDENCE-BASED INTERVENTIONS TO REACH AND IMPACT POPULATIONS WITH LOW SES CHARACTERISTICS; 4) INCREASE QUIT ATTEMPTS AMONG POPULATIONS WITH LOW SES CHARACTERISTICS; 5) INCREASE BREAST CANCER SCREENING AMONG AFRICAN AMERICAN WOMEN WITH LOW SES CHARACTERISTICS; 6) DECREASE INCIDENCE OF ADVANCED STAGE BREAST AND LUNG CANCER AMONG POPULATIONS WITH LOW SES CHARACTERISTICS; AND 7) INCREASE CANCER RELATED VACCINATIONS. IN FY2018/2019 PAF COMPLETED WORK TWO GRANTS FROM THE ROBERT WOOD JOHNSON FOUNDATION (RWJF), INCLUDING "SKILLED COMMUNICATIONS WORKSHOPS, A DISSEMINATION GRANT FOR THE ROADMAP TO CREATING CONSUMER CLARITY IN HEALTH CARE DECISION MAKING, AND "RAISING AWARENESS OF THE IMPORTANCE OF AND FACILITATING COST-OF-CARE DISCUSSIONS IN HEALTH CARE". THESE ARE THE SECOND AND THIRD GRANTS RWJF HAS AWARDED PAF. THE "ROADMAP TO CONSUMER CLARITY DISSEMINATION PROJECT" IS A COMPLIMENT TO AND EXTENSION OF THE WORK THAT WAS DONE UNDER PAF'S FIRST RWJF GRANT IN 2016, "CREATING A ROADMAP TO CONSUMER CLARITY IN HEALTH CARE DECISION MAKING. THIS INITIAL GRANT DEVELOPED A COMPREHENSIVE MODEL FOR IMPLEMENTING PERSONALIZED CARE ACROSS A WIDE-RANGE OF CLINICAL SETTINGS. THE DISSEMINATION GRANT PROVIDED A MEANS TO TAKE A KEY COMPONENT OF THAT MODEL, SKILLED COMMUNICATIONS, AND APPLY IT TO COMMUNITY SETTINGS. PAF, IN COLLABORATION WITH NATIONAL PATIENT ADVOCATE FOUNDATION (NPAF), WORKED WITH THREE COMMUNITY PARTNERS TO ACHIEVE THE GRANT'S OBJECTIVES, THE MOUNTAIN AREA HEALTH EDUCATION CENTER (MAHEC) IN ASHEVILLE, NORTH CAROLINA, THE UNIVERSITY OF ILLINOIS CHICAGO (UIC) AND THE NATIONAL MEDICAL ASSOCIATION (NMA) IN PHILADELPHIA. THE PRIMARY COMMUNITY BEING ENGAGED FOR THE MAHEC WORKSHOP WAS THE APPALACHIAN POPULATION, FOR UIC IT WAS AFRICAN AMERICAN AND LATINO CANCER PATIENTS, AND FOR THE NMA, AFRICAN AMERICAN PHYSICIANS. EACH PROGRAM WAS DEVELOPED IN CLOSE COORDINATION WITH THE COMMUNITY PARTNER AND ADDRESSED THE SPECIFIC NEEDS OF THE REGION AND ITS POPULATION. THE PROGRAMS WERE DESIGNED TO BE HIGHLY INTERACTIVE, INCLUDE SIGNIFICANT PARTICIPATION FROM A WIDE RANGE OF STAKEHOLDERS, INCLUDING PATIENTS AND ADVOCATES, AND STRESS SKILLS THAT CAN BE USED IN ACTUAL HEALTH CARE DECISION MAKING AT KEY POINTS DURING THE ILLNESS EXPERIENCES. THE INTENTION IS TO USE THESE WORKSHOPS AS MODELS FOR CONTINUING TO DEVELOP COLLABORATIVE EFFORTS WITH OTHER COMMUNITY PARTNERS TO ADVANCE THE PERSONALIZED CARE FOR BOTH PATIENTS AND THEIR HEALTH CARE TEAMS. THE FINANCIAL BURDEN OF FACING A SERIOUS ILLNESS OR DISABILITY CAN HAVE A SIGNIFICANT, OFTEN DEVASTATING IMPACT ON PATIENTS AND CAREGIVERS. THIS IMPACT CAN BE MEASURED BOTH IN TERMS OF DIRECT COSTS FOR TREATMENT AND CARE AND DECISIONS THAT PEOPLE MAKE ABOUT THEIR LIVES WHEN THEY INCUR MEDICAL DEBT. IT IS INCREASINGLY IMPORTANT THAT PATIENTS DISCUSS THE COSTS OF THEIR CARE WITH THEIR HEALTH CARE PROVIDERS AND INCORPORATE CONSIDERATIONS OF FINANCIAL BURDEN IN THE DECISION-MAKING PROCESS. OPEN, HONEST CONVERSATIONS ARE MORE IMPORTANT AND RELEVANT TO ASSESSING TREATMENT OPTIONS AND HELPING PATIENTS CHOOSE AND REMAIN ON THEIR TREATMENT PLANS. IN 2017, THE ROBERT WOOD JOHNSON FOUNDATION FUNDED EIGHT DIVERSE INVESTIGATORS TO DO EXPLORATORY RESEARCH ON BARRIERS AND OPPORTUNITIES THAT EXIST FOR FACILITATING COST OF CARE DISCUSSIONS AND INTEGRATING THEM INTO THE CLINICAL WORK FLOW. THIS FUNDING SUPPORTED PAF'S PROJECT, "RAISING AWARENESS OF THE IMPORTANCE OF AND FACILITATING COST-OF-CARE DISCUSSIONS IN HEALTH CARE". AS A FOLLOW UP TO THESE ACTIVITIES, RWJF FUNDED SEVERAL ORGANIZATIONS, INCLUDING PAF TO DEVELOP INNOVATIVE MEANS OF DISSEMINATING THESE FINDINGS AND RAISING AWARENESS OF THE IMPORTANCE OF COST OF CARE DISCUSSIONS IN HEALTH CARE. PAF, IN COLLABORATION WITH NPAF, DEVELOPED A WEBSITE FOR THIS PURPOSE, SPONSORED A SERIES OF WEBINARS ON COST OF CARE RELATED TOPICS, DEDICATED ITS POLICY CONSORTIUM TO COST OF CARE RELATED ISSUES. SCHOLARSHIP FOR SURVIVORS PROGRAM DURING THE FOUNDATION'S DAILY INTERACTIONS WITH PATIENTS, THE FOUNDATION STAFF OFTEN INTERFACE WITH PATIENTS WHO EITHER THEMSELVES OR A LOVED ONE HAS EXPERIENCED THE IMPACT OF A CHRONIC ILLNESS OR LIFE-THREATENING DISEASE ON ONE'S POST- SECONDARY EDUCATION. IN 2000, THE SCHOLARSHIP FOR SURVIVORS PROGRAM WAS ESTABLISHED TO HONOR THESE INDIVIDUALS BY OFFERING EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WHO HAVE SUFFERED (OR ARE SUFFERING) A LIFE-THREATENING DISEASE OR CHRONIC CONDITION. THESE STUDENTS HAVE, DESPITE THEIR DISEASE/CONDITION, EXCELLED ACADEMICALLY, SERVED THE COMMUNITY, AND DESIRE TO PURSUE A SECONDARY EDUCATION. DONORS GIVING DURING SILENT AND LIVE AUCTIONS AT THE FOUNDATION'S 18TH ANNUAL A PROMISE OF HOPE AFFAIR, AS WELL AS A FOUNDATION STAFF LED COMMUNITY FUNDRAISING INITIATIVE, HELPED MAKE IT POSSIBLE TO CONTINUE EXPANDING THE NUMBER OF STUDENTS SUPPORTED THROUGH THE SCHOLARSHIP FOR SURVIVORS PROGRAM FROM TWENTY TO TWENTY-FIVE FOR THE 2019-2020 ACADEMIC YEAR. TO DATE, THE FOUNDATION HAS AWARDED 113 SCHOLARSHIPS TOTALING OVER $640,000. |
| FORM 990, PART VI, SECTION A, LINE 2 | JOHN L. MURPHY, BOARD MEMBER AND FINANCE COMMITTEE CHAIR OF PATIENT ADVOCATE FOUNDATION, IS THE BROTHER-IN-LAW OF NANCY DAVENPORT-ENNIS, FOUNDER AND CHAIR EMERITA OF PATIENT ADVOCATE FOUNDATION. JOHN H. ENNIS, BOARD MEMBER AND CO-FOUNDER, IS THE HUSBAND OF NANCY DAVENPORT-ENNIS, FOUNDER AND CHAIR EMERITA OF PATIENT ADVOCATE FOUNDATION. FRANCES CASTELLOW, PRESIDENT, OPERATIONS OF PATIENT ADVOCATE FOUNDATION, IS THE DAUGHTER OF NANCY DAVENPORT-ENNIS, FOUNDER AND CHAIR EMERITA OF PATIENT ADVOCATE FOUNDATION. BETH MOORE, EVP OF CORPORATE COMMUNICATIONS OF PATIENT ADVOCATE FOUNDATION, IS THE DAUGHTER OF NANCY DAVENPORT-ENNIS, FOUNDER AND CHAIR EMERITA OF PATIENT ADVOCATE FOUNDATION. |
| 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 | MEMBERS OF THE PAF BOARD OF DIRECTORS ARE REQUIRED TO REVIEW AND SIGN THE CONFLICT OF INTEREST POLICY UPON ESTABLISHING MEMBERSHIP AND ANNUALLY COMPLETE AN UPDATED CONFLICT OF INTEREST DISCLOSURE QUESTIONNAIRE. 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 & COMPLIANCE COMMITTEE AND A DETERMINATION ON THE EXISTENCE OF A MATERIAL CONFLICT WILL BE ISSUED. THE GOVERNANCE & COMPLIANCE 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 "MEET PAF" 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 -689,077. |
| FORM 990, PART XII, LINE 2C | NO CHANGES WERE MADE TO THE ORGANIZATION OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE TAX YEAR. |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUED FROM SCHEDULE A (A). IN FY2018/2019, THE FOUNDATION ADMINISTERED CO-PAYMENT ASSISTANCE TO 75,580 QUALIFIED PATIENTS THROUGH THE 32 ASSISTANCE FUNDS AVAILABLE THROUGH THE CO-PAY RELIEF PROGRAM. THE PROGRAM STAFF FIELDED 230,263 TELEPHONE CALLS AND PROCESSED CLAIMS, TOTALING $241,032,635, 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 400,000 INDIVIDUALS ALLOCATING MORE THAN $1.21 BILLION DOLLARS IN CO-PAYMENT AWARDS. HEALTH EQUITY INITIATIVE, COMMUNITY OUTREACH & PATIENT ENGAGEMENT THE FOUNDATION'S COMMITMENT TO ACHIEVING HEALTH EQUITY IS EMBEDDED IN ADDRESSING THE SOCIAL DETERMINANTS OF HEALTH. BROAD LOCAL AND NATIONAL EFFORTS ADDRESS POLICY, SOCIAL FACTORS, AND HEALTH SERVICES IMPACTING PERSONS WITH BREAST AND LUNG CANCER. SPECIFIC ACTIVITIES FOCUS ON TACKLING SOCIAL/FINANCIAL SUPPORT NEEDS AND MITIGATING BARRIERS THAT IMPACT ACCESS TO HEALTH SERVICES. THROUGH THE WORK OF THE SELFMADE HEALTH NETWORK, A MEMBER OF THE CENTERS FOR DISEASE CONTROL AND PREVENTION'S (CDC) CONSORTIUM OF NATIONAL NETWORKS ADDRESSING CANCER AND TOBACCO DISPARITIES AMONG SPECIAL POPULATIONS, OUR HEALTH EQUITY FOOTPRINT IS EXPANDED TO ADDRESS OTHER SOCIAL DETERMINANTS SUCH AS THE PHYSICAL ENVIRONMENT, HEALTHY BEHAVIORS, WORKING CONDITIONS (THROUGH CLEAN INDOOR AIR POLICIES), EDUCATION AND HEALTH LITERACY. THROUGH A MYRIAD OF LOCAL AND NATIONAL PARTNERSHIP PAF'S HEALTH EQUITY INITIATIVE ENGAGES WITH STAKEHOLDERS TO BETTER UNDERSTAND THE LIVED EXPERIENCES OF PERSONS WITH BREAST AND LUNG CANCER AND ASSESS IF RESOURCES WITHIN PAF'S PORTFOLIO OF SERVICES AND SUPPORT CAN BRING ABOUT POSITIVE SOLUTIONS. TO ACCOMPLISH THIS GOAL, PAF USES A COMMUNITY ENGAGEMENT MODEL TO CONVENE COMMUNITY MEETINGS, CONDUCT FOCUS GROUPS AND OTHER CONVERSATIONS TO BETTER UNDERSTAND THE NEEDS OF COMMUNITIES. THROUGH ITS PARTNERSHIP WITH NATIONAL ORGANIZATIONS SUCH AS NATIONAL BLACK NURSES ASSOCIATION AND LIVING BEYOND BREAST CANCER, YOUNG SURVIVORS COALITION AND OTHERS, PAF IS ABLE TO ENGAGE WITH HEALTH CARE PROVIDERS, PATIENTS AND CAREGIVERS TO BRING AWARENESS OF LOCAL AND NATIONAL RESOURCES, INCLUDING THOSE PROVIDED BY PAF TO ASSIST THE POPULATIONS THEY SERVE. THROUGH 3 NATIONAL AND 9 LOCAL OUTREACH EVENTS, PAF REACHED MORE THAN 2880 PATIENTS, CAREGIVERS, COMMUNITY HEALTH WORKERS, LAY HEALTH NAVIGATORS AND NURSES. THIS FISCAL YEAR MARKED MANY "FIRSTS" FOR THE FOUNDATION'S HEALTH EQUITY WORK. IN JULY 2018, A NEW PARTNERSHIP WITH THE NATIONAL BLACK NURSES ASSOCIATION-ST. LOUIS CHAPTER WAS LAUNCHED. THE PARTNERSHIP INVOLVED EDUCATING NEWLY DIAGNOSIS BREAST CANCER PATIENTS ABOUT PAF SERVICES AND RESOURCES AS A PART OF THEIR BREAST CANCER BUDDY PROGRAM. THE INITIAL PILOT REACHED 40 LIMITED RESOURCED, NEWLY DIAGNOSED BREAST CANCER PATIENTS. THE PROGRAM IS SLATED TO EXPAND IN 2020 TO INCLUDE MEN WITH CANCER AND OTHER COMMUNITY ORGANIZATIONS. ADDITIONALLY, PAF JOINED NBNA-ST. LOUIS CHAPTER IN THEIR FIRST COMMUNITY HEALTH AND WELLNESS OUTREACH EVENT. PARTICIPANTS TOOK ADVANTAGE OF HEALTH SCREENINGS, INFORMATION ABOUT AVAILABLE COMMUNITY AND NATIONAL RESOURCES, AND PARTICIPATED IN HANDS ON EXERCISE DEMONSTRATIONS. ST. LOUIS IS ONE OF 10 CITIES WHERE THE BREAST CANCER MORTALITY DISPARITY BETWEEN AFRICAN- AMERICAN AND CAUCASIAN WOMEN WAS 50% OR GREATER AND IS A STRATEGIC FOCUS CITY FOR THE FOUNDATION HEALTH EQUITY EFFORTS. IN SEPTEMBER 2018, THE EVP FOR HEALTH EQUITY AND COMMUNITY ENGAGEMENT WAS THE KEYNOTE SPEAKER AT THE 2018 IOWA CANCER SUMMIT. THE PRESENTATION PROVIDED ATTENDEES A LIVE DEMONSTRATION OF HOW TO ACCESS AND NAVIGATE LOCAL AND NATIONAL RESOURCES USING PAF'S NATIONAL FINANCIAL RESOURCE DIRECTORY AND OTHER PAF EDUCATIONAL TOOLS. AS A PART OF THE FOUNDATION'S WEST VIRGINIA LUNG CANCER PROJECT, A PARTNERSHIP WITH WEST VIRGINIA UNIVERSITY CANCER INSTITUTE AND MOUNTAINS OF HOPE CANCER COALITION, PAF DEVELOPED THE AGENDA FOR THE SECOND ANNUAL WV LUNG CANCER CONFERENCE THROUGH THE LENS OF ACHIEVING HEALTH EQUITY. THE CONFERENCE FEATURED NATIONALLY RECOGNIZED HEALTH EQUITY LEADER, DR. CAMARA JONES AND INCLUDED WV'S FIRST POLICY PANEL TO RESPOND TO THE LUNG CANCER BURDEN ACROSS WV, FACILITATED BY HARVARD LAW SCHOOL, A FELLOW GRANTEE. IN FEBRUARY 2019, IN PARTNERSHIP WITH SISTER'S WORKING IT OUT, A CHICAGO BASED COMMUNITY BREAST CANCER EDUCATION AND ADVOCACY ORGANIZATION, PAF CONVENED THE INAUGURAL "SOUTHSIDE COMMUNITY CONVERSATION TO FIGHT BREAST CANCER." THIS EVENT WAS DESIGNED TO EDUCATE ATTENDEES ON THE DISPARATE BREAST CANCER MORTALITY BURDEN ACROSS THE COMMUNITIES THAT COMPRISE CHICAGO'S SOUTHLAND AND TO BETTER UNDERSTAND, THROUGH THE EYES OF THE COMMUNITY, THEIR PERCEPTION OF THE CONTRIBUTING FACTORS TO THE CANCER DISPARITIES; GAPS IN SERVICES AND RESOURCES; AND EXPLORE POSSIBLE SOLUTIONS. THE EVENT WAS ATTENDED BY MORE THAN 40 COMMUNITY MEMBERS REPRESENTING OTHER BREAST CANCER SURVIVOR ORGANIZATIONS, OTHER ADVOCACY GROUPS, NEIGHBORHOOD BLOCK CLUBS, BREAST CANCER SURVIVORS, FAITH-BASED LEADERS, AND HEALTH CARE PROFESSIONALS. THE PROCEEDINGS FROM THIS CONVERSATION ARE THE BEDROCK OF THE FOUNDATION'S FUTURE ACTIVITIES IN CHICAGO AND WILL GUIDE FOLLOW-UP COMMUNITY OUTREACH AND ENGAGEMENT ACTIVITIES, INCLUDING BUT NOT LIMITED TO, THE PRODUCTION OF LOCAL BREAST CANCER RESOURCE DIRECTORY; CONVENING OF A LOCAL THINK TANK TO STRATEGICALLY OUTLINE AN ACTION PLAN TO ADDRESS IDENTIFIED GAPS; AND ENGAGE WITH OTHER STAKEHOLDERS TO EDUCATE WOMEN ACROSS CHICAGO'S SOUTHLAND ABOUT AVAILABLE RESOURCES AND HOW TO ACCESS THEM. THE FOUNDATION WAS SUCCESSFULLY IN SECURING A NEW FIVE-YEAR 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 IS FOCUSED ON IMPLEMENTING EVIDENCE-BASED STRATEGIES TO REDUCE TOBACCO AND CANCER RELATED DISPARITIES AMONG POPULATIONS WITH LOW SOCIOECONOMIC STATUS (SES) CHARACTERISTICS. UNDER THE PREVIOUS AWARD, THE NETWORK SUCCESSFULLY IMPLEMENTED PILOT INTERVENTIONS AND PROVIDED TECHNICAL ASSISTANCE IN TENNESSEE, KENTUCKY, VIRGINIA, SOUTH CAROLINA, WEST VIRGINIA, AND TEXAS, AND WITH THE COLLABORATION OF THE AMERICAN LUNG ASSOCIATION, DESIGNED AND IMPLEMENTED THE SMHN TOBACCO CESSATION MARKETPLACE PROJECT, WHICH WAS PILOTED IN 10 STATES TO IMPLEMENT BRIEF TOBACCO CESSATION COUNSELING INTO THE AFFORDABLE CARE ACT (ACA) MARKETPLACE ANNUAL INSURANCE ENROLLMENT PROCESS. FOR ITS WORK IN EDUCATING YOUNG WOMEN ABOUT GYNECOLOGIC CANCERS AND THE HUMAN PAPILLOMAVIRUS (HPV) VACCINATION, SMHN WAS ONE OF THE FIRST NETWORKS TO HAVE A SUCCESS STORY PUBLISHED BY THE CDC DCPC. UNDER THE NEW COOPERATIVE AGREEMENT, SMHN WILL IMPLEMENT EVIDENCE-BASED STRATEGIES TO 1) IMPROVE THE CAPACITY OF CDC-FUNDED STATE TOBACCO AND COMPREHENSIVE CANCER CONTROL PROGRAMS IN COLLECTION AND USE OF DATA SPECIFIC TO POPULATIONS WITH LOW SES CHARACTERISTICS; 2) STRENGTHEN RELATIONSHIPS BETWEEN ORGANIZATIONS SERVING LOW SES POPULATIONS, CDC-FUNDED STATE PROGRAMS, AND OTHER FUNDED NETWORKS; 3) INCREASE THE DELIVERY OF EVIDENCE-BASED INTERVENTIONS TO REACH AND IMPACT POPULATIONS WITH LOW SES CHARACTERISTICS; 4) INCREASE QUIT ATTEMPTS AMONG POPULATIONS WITH LOW SES CHARACTERISTICS; 5) INCREASE BREAST CANCER SCREENING AMONG AFRICAN AMERICAN WOMEN WITH LOW SES CHARACTERISTICS; 6) DECREASE INCIDENCE OF ADVANCED STAGE BREAST AND LUNG CANCER AMONG POPULATIONS WITH LOW SES CHARACTERISTICS; AND 7) INCREASE CANCER RELATED VACCINATIONS. IN FY2018/2019 PAF COMPLETED WORK ON TWO GRANTS FROM THE ROBERT WOOD JOHNSON FOUNDATION (RWJF), INCLUDING "SKILLED COMMUNICATIONS WORKSHOPS, A DISSEMINATION GRANT FOR THE ROADMAP TO CREATING CONSUMER CLARITY IN HEALTH CARE DECISION MAKING, AND "RAISING AWARENESS OF THE IMPORTANCE OF AND FACILITATING COST-OF-CARE DISCUSSIONS IN HEALTH CARE". THESE ARE THE SECOND AND THIRD GRANTS RWJF HAS AWARDED PAF. CONTINUED LATER IN SCHEDULE O (B). |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUATION FROM SCHEDULE O (B). THE "ROADMAP TO CONSUMER CLARITY DISSEMINATION PROJECT" IS A COMPLIMENT TO AND EXTENSION OF THE WORK THAT WAS DONE UNDER PAF'S FIRST RWJF GRANT IN 2016, "CREATING A ROADMAP TO CONSUMER CLARITY IN HEALTH CARE DECISION MAKING. THIS INITIAL GRANT DEVELOPED A COMPREHENSIVE MODEL FOR IMPLEMENTING PERSONALIZED CARE ACROSS A WIDE RANGE OF CLINICAL SETTINGS. THE DISSEMINATION GRANT PROVIDED A MEANS TO TAKE A KEY COMPONENT OF THAT MODEL, SKILLED COMMUNICATIONS, AND APPLY IT TO COMMUNITY SETTINGS. PAF, IN COLLABORATION WITH NATIONAL PATIENT ADVOCATE FOUNDATION (NPAF), WORKED WITH THREE COMMUNITY PARTNERS TO ACHIEVE THE GRANT'S OBJECTIVES, THE MOUNTAIN AREA HEALTH EDUCATION CENTER (MAHEC) IN ASHEVILLE, NORTH CAROLINA, THE UNIVERSITY OF ILLINOIS CHICAGO (UIC) AND THE NATIONAL MEDICAL ASSOCIATION (NMA) IN PHILADELPHIA. THE PRIMARY COMMUNITY BEING ENGAGED FOR THE MAHEC WORKSHOP WAS THE APPALACHIAN POPULATION, FOR UIC IT WAS AFRICAN AMERICAN AND LATINO CANCER PATIENTS, AND FOR THE NMA, AFRICAN AMERICAN PHYSICIANS. EACH PROGRAM WAS DEVELOPED IN CLOSE COORDINATION WITH THE COMMUNITY PARTNER AND ADDRESSED THE SPECIFIC NEEDS OF THE REGION AND ITS POPULATION. THE PROGRAMS WERE DESIGNED TO BE HIGHLY INTERACTIVE, INCLUDE SIGNIFICANT PARTICIPATION FROM A WIDE RANGE OF STAKEHOLDERS, INCLUDING PATIENTS AND ADVOCATES, AND STRESS SKILLS THAT CAN BE USED IN ACTUAL HEALTH CARE DECISION MAKING AT KEY POINTS DURING THE ILLNESS EXPERIENCES. THE INTENTION IS TO USE THESE WORKSHOPS AS MODELS FOR CONTINUING TO DEVELOP COLLABORATIVE EFFORTS WITH OTHER COMMUNITY PARTNERS TO ADVANCE THE PERSONALIZED CARE FOR BOTH PATIENTS AND THEIR HEALTH CARE TEAMS. THE FINANCIAL BURDEN OF FACING A SERIOUS ILLNESS OR DISABILITY CAN HAVE A SIGNIFICANT, OFTEN DEVASTATING IMPACT ON PATIENTS AND CAREGIVERS. THIS IMPACT CAN BE MEASURED BOTH IN TERMS OF DIRECT COSTS FOR TREATMENT AND CARE AND DECISIONS THAT PEOPLE MAKE ABOUT THEIR LIVES WHEN THEY INCUR MEDICAL DEBT. IT IS INCREASINGLY IMPORTANT THAT PATIENTS DISCUSS THE COSTS OF THEIR CARE WITH THEIR HEALTH CARE PROVIDERS AND INCORPORATE CONSIDERATIONS OF FINANCIAL BURDEN IN THE DECISION-MAKING PROCESS. OPEN, HONEST CONVERSATIONS ARE MORE IMPORTANT AND RELEVANT TO ASSESSING TREATMENT OPTIONS AND HELPING PATIENTS CHOOSE AND REMAIN ON THEIR TREATMENT PLANS. IN 2017, THE ROBERT WOOD JOHNSON FOUNDATION FUNDED EIGHT DIVERSE INVESTIGATORS TO DO EXPLORATORY RESEARCH ON BARRIERS AND OPPORTUNITIES THAT EXIST FOR FACILITATING COST OF CARE DISCUSSIONS AND INTEGRATING THEM INTO THE CLINICAL WORKFLOW. THIS FUNDING SUPPORTED PAF'S PROJECT, "RAISING AWARENESS OF THE IMPORTANCE OF AND FACILITATING COST-OF-CARE DISCUSSIONS IN HEALTH CARE". AS A FOLLOW UP TO THESE ACTIVITIES, RWJF FUNDED SEVERAL ORGANIZATIONS, INCLUDING PAF TO DEVELOP INNOVATIVE MEANS OF DISSEMINATING THESE FINDINGS AND RAISING AWARENESS OF THE IMPORTANCE OF COST OF CARE DISCUSSIONS IN HEALTH CARE. PAF, IN COLLABORATION WITH NPAF, DEVELOPED A WEBSITE FOR THIS PURPOSE, SPONSORED A SERIES OF WEBINARS ON COST OF CARE RELATED TOPICS, DEDICATED ITS POLICY CONSORTIUM TO COST OF CARE RELATED ISSUES. PATIENT EDUCATION & EMPOWERMENT LASTLY, PAF EXTENDS THE IMPACT OF ITS ONE-TO-ONE CASE MANAGEMENT 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. 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 GENERAL 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, AS WELL AS A CULTIVATED GROUP OF MATERIALS FROM OTHER INDUSTRY EXPERTS, ALL OF WHICH ARE AVAILABLE FREE OF CHARGE TO PATIENT. DURING FY2018/2019, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM CONTINUED ITS'S PATIENT INSIGHT AND REVIEWER PANEL, A MECHANISM THROUGH WHICH FEEDBACK AND SUPPORT ON EDUCATIONAL PROJECTS OF ALL KINDS IS OBTAINED IN A SYSTEMATIC AND RELIABLE MANNER FROM PATIENTS LIVING WITH CERTAIN DISEASES TO EVALUATE THE EFFECTIVENESS OF PAF'S EDUCATIONAL MATERIALS AND TOOLS FROM A PATIENT PERSPECTIVE. FURTHER, THIS FY PAF DEVELOPED 17 EDUCATIONAL PUBLICATIONS, PUBLISHED 11 WEB ARTICLES, DEVELOP AND RELEASED 9 NEW PATIENT EMPOWERMENT SERIES WEBINARS, LAUNCHED 4 NEW EDUCATIONAL PROJECTS AND COMPLETED ENHANCEMENTS TO 4 EXISTING PROJECTS, INCLUDING THE NEWLY DESIGNED, EASIER TO NAVIGATE, MOBILE-FRIENDLY ORGANIZATIONAL WEBSITE, WWW.PATIENTADVOCATE.ORG . PAF NATIONAL FINANCIAL RESOURCE DIRECTORY " USERS COMPLETED 33,006 ELECTRONIC SEARCHES FOR RESOURCES " 1,204,863 MATCHING RESOURCES WERE PROVIDED TO USERS, A 15% INCREASE FROM LAST YEAR " 690 RESOURCES ADDED, 1090 RESOURCES UPDATED, 285 RESOURCES DEACTIVATED BY PAF STAFF " USERS SEARCHED FOR FINANCIAL ASSISTANCE MOST FREQUENTLY, FOLLOWED BY MEDICAL BILL ASSISTANCE, CHARITABLE COPAYMENT ASSISTANCE, UTILITY, TRANSPORTATION, AND HOUSING/LODGING ASSISTANCE NEW PATIENT EDUCATION PUBLICATIONS AND TOOLS " DEVELOPMENT OF "MIGRAINE MATTERS" EDUCATIONAL SYNDICATION TOOL FOR USE BY PATIENTS SUFFERING WITH MIGRAINES AND THOSE NON-PROFIT ORGANIZATIONS SUPPORTING THEM. " DEVELOPED MULTIPLE PATIENT EMPOWERMENT ONE PAGERS ON A RANGE OF TOPICS FOR USE BY PATIENTS SUFFERING WITH MIGRAINES " CREATION OF THE ONLINE RESOURCE DIRECTORY FOR METASTATIC BREAST CANCER PATIENTS " PUBLISHED "TAKING THE LEAD WHEN IT COMES TO YOUR BREAST CANCER", AN ADDITION TO THE NAVIGATING BREAST CANCER RESOURCE LIBRARY " PRODUCED & DISTRIBUTED THE HEART VALVE CARELINE PATIENT STORY VIDEO DURING FY2018/2019, 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 GENERAL 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 SOME CASES, TARGETED TO A SPECIFIC POPULATION THAT IS KNOWN TO BE CONSIDERED DISPARATE IN HEALTHCARE ACCESS AND DISEASE OUTCOMES DATA. IN FY2018/2019, THE FOUNDATION ATTENDED 119 OUTREACH EVENTS, A 47% INCREASE FROM PRIOR YEAR, AND DISTRIBUTED NEARLY 7500 EDUCATIONAL PUBLICATIONS THROUGH THESE EVENTS. SCHOLARSHIP FOR SURVIVORS PROGRAM DURING THE FOUNDATION'S DAILY INTERACTIONS WITH PATIENTS, THE STAFF OFTEN INTERFACE WITH PATIENTS WHO EITHER THEMSELVES OR A LOVED ONE HAS EXPERIENCED THE IMPACT OF A CHRONIC ILLNESS OR LIFE-THREATENING DISEASE ON ONE'S POST- SECONDARY EDUCATION. IN 2000, THE SCHOLARSHIP FOR SURVIVORS PROGRAM WAS ESTABLISHED TO HONOR THESE INDIVIDUALS BY OFFERING EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WHO HAVE SUFFERED (OR ARE SUFFERING) A LIFE-THREATENING DISEASE OR CHRONIC CONDITION. THESE STUDENTS HAVE, DESPITE THEIR DISEASE/CONDITION, EXCELLED ACADEMICALLY, SERVED THE COMMUNITY, AND DESIRE TO PURSUE A SECONDARY EDUCATION. DONORS GIVING DURING SILENT AND LIVE AUCTIONS AT THE FOUNDATION'S 18TH ANNUAL A PROMISE OF HOPE AFFAIR, AS WELL AS A FOUNDATION STAFF LED COMMUNITY FUNDRAISING INITIATIVE, HELPED MAKE IT POSSIBLE TO CONTINUE EXPANDING THE NUMBER OF STUDENTS SUPPORTED THROUGH THE SCHOLARSHIP FOR SURVIVORS PROGRAM FROM TWENTY TO TWENTY-FIVE FOR THE 2019-2020 ACADEMIC YEAR. TO DATE, THE FOUNDATION HAS AWARDED 113 SCHOLARSHIPS TOTALING OVER $640,000 CONTINUED LATER IN SCHEDULE O (C). |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUATION FROM SCHEDULE O (C). PUBLIC SUPPORT PERCENTAGE THE FOUNDATION'S CUMULATIVE PUBLIC SUPPORT PERCENTAGE THROUGH JUNE 30, 2018 IS 19.77%, WHICH 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 PRESENT A VERY STRONG CASE IN SUPPORT OF ITS ONGOING CLASSIFICATION AS A PUBLIC CHARITY. 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, 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. 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 PHARMACEUTICAL CO-PAYMENTS THROUGH ITS CPR PROGRAM; 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 AND EMPOWERMENT PROGRAMS, HEALTH EQUITY INITIATIVES, 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 FULL TIME PROGRAM DEVELOPMENT STAFF OF FIVE (5) WHOM, IN PARTNERSHIP WITH THE CEO 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 FY2018/2019, THE PROGRAM DEVELOPMENT STAFF SUBMITTED 321 GRANTS AND FACILITATED FUNDRAISING CAMPAIGNS TO THE GENERAL PUBLIC. THIS REPRESENTS A 37% INCREASE IN GRANT SUBMISSIONS AS COMPARED TO FY2017/2018. OVER THE LAST FIVE YEARS OF OPERATION PAF'S MISSION HAS BEEN SUPPORTED BY 1597 DONORS ACROSS ALL SOURCES OF CHARITABLE DONATIONS. IN FY2018/2019, PAF RECEIVED CONTRIBUTIONS FROM 621 DONORS INCLUDING SUPPORT FROM INDIVIDUALS, CORPORATIONS AND CORPORATE FOUNDATIONS, GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. FURTHER IN 2018/2019, PAF RECEIVED DONATIONS OF SUPPORT FROM TWENTY-SEVEN (27) NON-PROFIT ORGANIZATIONS, ALL 501C3 PUBLIC CHARITIES AND PRIVATE FOUNDATIONS, OF WHICH 9 WERE NEW DONORS. THESE ORGANIZATIONS FUNDED GRANTS TO PAF IN SUPPORT OF ITS CASE MANAGEMENT, PATIENT EDUCATION, FINANCIAL AID FUNDS AND CO-PAY RELIEF PROGRAM. GRANT SUPPORT FROM NON-PROFIT ORGANIZATIONS REPRESENTED THE MAJORITY OF FUNDING FOR THE PAF CASE MANAGEMENT PROGRAMS. IN FY2018/2019, PAF CONTINUED ITS' RELATIONSHIP WITH ALS ASSOCIATION TO PROVIDE PATIENT EDUCATION AROUND INSURANCE BENEFITS AND AMERICAN CANCER SOCIETY, PROVIDING CASE MANAGEMENT SUPPORT TO PATIENTS CALLING ACS FOR HELP. LIVESTRONG FOUNDATION PARTNERED WITH PAF TO PROVIDE ITS CANCER NAVIGATION AND FERTILITY ASSISTANCE PROGRAMMING AND THE DONNA FOUNDATION CONTINUED THEIR SUPPORT OF CASE MANAGEMENT AND FINANCIAL AID FUND PROGRAMS SERVING BREAST CANCER PATIENTS. ZERO - THE END OF PROSTATE CANCER EXPANDED ITS PARTNERSHIP PROGRAM WITH PAF, SERVING PROSTATE CANCER PATIENTS WITH CASE MANAGEMENT SERVICES ALSO. PAF'S LUPUS INITIATIVE WAS SUPPORTED BY THE AMERICAN COLLEGE OF RHEUMATOLOGY. IN A NEWLY LAUNCHED EMPLOYER-SPONSORED PATIENT SUPPORT PROGRAM, FLORIDA ALLIANCE FOR HEALTHCARE VALUE, AN ALLIANCE OF THE STATE'S BIGGEST EMPLOYERS, DONATED TO SUPPORT THE CANCER NAVIGATION PROGRAM, A PROACTIVE INSURANCE AND EMPLOYER BENEFIT CASE MANAGEMENT FOR THEIR EMPLOYEES. PAF SECURED SPONSORSHIPS AND SOLD TICKETS FOR ITS BLACK-TIE FUNDRAISER, PROMISE OF HOPE AFFAIR, IN FEBRUARY 2019, ATTENDED BY MORE THAN 300 ATTENDEES WHO SUPPORTED PAF AT THE EVENT AS WELL THROUGH LIVE AND SILENT AUCTIONS. 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 FY2018/2019, PAF DEVELOPMENT TEAM DESIGNED AND LAUNCHED THE "TRANSFORM A PATIENT'S LIFE", A DIY FUNDRAISING PLATFORM FOR ONGOING, ONLINE PEER-TO-PEER FUNDRAISING CAMPAIGNS. 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 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. 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. CONTINUED LATER IN SCHEDULE O (D). |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUATION FROM SCHEDULE O (D). 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. ARENT FOX, LLP, WHO ARE EXPERTS IN REGULATORY COMPLIANCE, SPECIALIZING IN COMPLIANCE PROGRAMS RELATIVE TO PATIENT ASSISTANCE PROGRAMS, PROVIDE MANAGEMENT OF PAF'S ORGANIZATIONAL COMPLIANCE PROGRAM, AS WELL AS SERVE AS COMPLIANCE COUNSEL. ALL PROGRAMS OPERATED BY PAF, INCLUDING CPR, ARE MONITORED AND EVALUATED AS PART OF THE COMPLIANCE PROGRAM, AS DEFINED IN THE COMPLIANCE CHARTER. THE PROGRAM IS DESIGNED TO ASSIST THE FOUNDATION 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, THE CHARITABLE PATIENT ASSISTANCE PROGRAM CODE OF ETHICS AND THE FOUNDATION'S POLICIES AND PROCEDURES. THE COMPLIANCE PROGRAM IS BASED ON THE 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 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 2018 AND THE ENTIRE PAF STAFF RECEIVED THE ANNUAL TRAINING IN AUGUST 2018. THESE TRAININGS INCLUDED A CLEAR OVERVIEW OF THE 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 2018, 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 GENERAL 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 1597 ORGANIZATIONS AND INDIVIDUALS INCLUDING, BUT NOT LIMITED TO, THE FOLLOWING: " DONATING 501(C)3 CHARITABLE ORGANIZATIONS INCLUDE: " ALLIANCE FOR AGING RESEARCH " ALS ASSOCIATION " AMERICAN CANCER SOCIETY " AMERICAN COLLEGE OF RHEUMATOLOGY " APLASTIC ANEMIA AND MDS INTERNATIONAL FOUNDATION " AVON BREAST CANCER CRUSADE, LLC " AVON FOUNDATION " BAY AREA CANCER CONNECTIONS " BOSHWAY FOUNDATION " BREAKAWAY FROM CANCER " BREAST CANCER RESEARCH FOUNDATION OF ALABAMA " CANCER SUPPORT COMMUNITY " CAN DO MULTIPLE SCLEROSIS " CHANGELAB SOLUTIONS " COALITION FOR HEADACHE AND MIGRAINE PATIENTS " CONQUER CANCER FOUNDATION " FIDELITY CHARITABLE GIFT FUND " FLORIDA ALLIANCE FOR HEALTHCARE VALUE " FRIENDS OF CANCER RESEARCH " GOODCOIN FOUNDATION " GUIDESTAR.ORG " HEALTH PHILANTHROPY SERVICES GROUP LLC " IOWA CANCER CONSORTIUM " JUSTGIVE " KINGS CARE FOUNDATION " LANCASTER RED ROSE CHAPTER ONS " LEUKEMIA & LYMPHOMA SOCIETY " LIVESTRONG FOUNDATION " LOCAL INDEPENDENT CHARITIES OF AMERICA " LONG ISLAND COMMUNITY FOUNDATION " LUNGEVITY FOUNDATION " MORGAN STANLEY GLOBAL IMPACT FUNDING TRUST " MOVEMBER FOUNDATION " MSHO FOUNDATION " NATIONAL COMPREHENSIVE CANCER NETWORK, INC. " NATIONAL HEALTH COUNCIL " NETWORK FOR GOOD ORANGE COUNTY'S UNITED WAY " PANCREATIC CANCER ACTION NETWORK " PAYPAL CHARITABLE GIVING FUND " PENINSULA COMMUNITY FOUNDATION OF VIRGINIA, INC. " PHARMACY QUALITY ALLIANCE " PHRMA FOUNDATION " ROBERT WOOD JOHNSON FOUNDATION " SCHWAB CHARITABLE FUND " SILICON VALLEY COMMUNITY FOUNDATION " SUSAN G. KOMEN " THE BENEVITY COMMUNITY IMPACT FUND " THE DONNA FOUNDATION " THE WISHLIST FOUNDATION " TIAA CHARITABLE INC. " UNITED WAY SALT LAKE " VANGUARD CHARITABLE " VITALOGY FOUNDATION " YOURCAUSE LLC " ZERO - THE END OF PROSTATE CANCER " GOVERNMENTAL AGENCIES: " CENTERS FOR DISEASE CONTROL AND PREVENTION " CITY OF MODESTO " COMMONWEALTH OF VIRGINIA " CORPORATIONS AND CORPORATE FOUNDATIONS O 199 DONATING CORPORATIONS AND CORPORATE FOUNDATIONS O 79 MADE DONATIONS IN FY2018/2019 " ACADEMIC AND RESEARCH INSTITUTIONS & PRIVATE FOUNDATIONS " BEGIN AGAIN FOUNDATION " ECOG-ACRIN MEDICAL RESEARCH FOUNDATION, INC " FRED HUTCHINSON CANCER RESEARCH CENTER " HIGH PINES FOUNDATION " INSTITUTE FOR ADVANCED STUDY " JENNIFER JAFF FOUNDATION " MAHAN FOUNDATION " QUINNIPIAC UNIVERSITY DEPT OF NURSING " RIVERSIDE HEALTH SYSTEM FOUNDATION " ROBERT WOOD JOHNSON FOUNDATION " SAINT LEO UNIVERSITY " SEATTLE CANCER CARE ALLIANCE " T.L. HANNA HIGH SCHOOL " THE JAMES P. & LESLIE K. MORLEY FAMILY CHARITABLE FUND " THE WILDFLOWER FOUNDATION, INC. " UNIVERSITY OF CALIFORNIA, IRVINE " GENERAL PUBLIC O RECEIVED MEMORIAL, HONORARY AND GENERAL SUPPORT AND CONTRIBUTIONS FROM OVER 510 INDIVIDUALS IN FY2018/2019 O HOSTED BLACK TIE GALA IN FEBRUARY 2019 ATTENDED BY OVER 300 GUESTS SUPPORTING THE EVENT, INCLUDING LIVE AND SILENT AUCTION O RECEIVED SUPPORT FROM MORE THAN 96 INDIVIDUAL DONORS AND 7 CORPORATE DONORS IN SUPPORT OF STAFF PARTICIPATION IN CRAWL N' CRAB 5K RACE IN 2019, A 39% INCREASE IN INDIVIDUAL DONORS OVER THE PREVIOUS FISCAL YEAR. O RECEIVED DONATIONS FROM OVER 1320 INDIVIDUALS OVER THE PAST 5 YEARS IN FY2018/2019, PAF RECEIVED CONTRIBUTIONS FROM OVER 620 DONORS INCLUDING SUPPORT FROM INDIVIDUALS, CORPORATE PARTNERS AND FOUNDATIONS, GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. CONTINUED LATER IN SCHEDULE O (E). |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUATION FROM SCHEDULE O (D). 3. REPRESENTATIVE GOVERNING BODY THE PAF EXECUTIVE BOARD OF DIRECTORS COMPRISED OF 14 VOTING MEMBERS, AND 3 NON-VOTING MEMBERS, ALL OF WHOM ARE NATIONALLY RECOGNIZED EXPERTS IN THE FIELDS OF HEALTHCARE ADMINISTRATION, CLINICAL PRACTICE AND RESEARCH, DIRECT PATIENT CARE, NON-PROFIT MANAGEMENT, GOVERNMENT/PUBLIC HEALTH, PATIENT ADVOCACY, HEALTH INSURANCE, TECHNOLOGY AND LAW. THE COMPOSITION OF THE BOARD IS A LIVING DEMONSTRATION 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, COMPLIANCE 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, TWICE IN PERSON AND ONCE VIA CONFERENCE CALL TO BE 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". IN 2018, THE PAF BOARD OF DIRECTOR'S VOTED TO ADOPT A CHANGE TO ITS BYLAWS REQUIRING THAT ALL CURRENT AND FUTURE VOTING MEMBERS OF THE PAF EXECUTIVE BOARD TO BE INDEPENDENT PER THE IRS DEFINITION OF INDEPENDENCE. PURSUANT TO THESE STANDARDS, ALL MEMBERS OF THE PAF BOARD OF DIRECTORS MEET THE INDEPENDENCE TEST AND AS SUCH, PAF HAS A FULLY INDEPENDENT BOARD OF DIRECTORS. PAF'S COMPLIANCE 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 FY2018/2019 CONSISTED OF FIVE (5) INDEPENDENT MEMBERS OF THE PAF BOARD OF DIRECTORS. 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 FY2018/2019, PAF SERVED OVER 136,000 PEOPLE, LIVING IN ALL 50 STATES AND US TERRITORIES, SUFFERING WITH 613 VARIOUS CHRONIC, DEBILITATING AND/OR CRITICAL DISEASES. REFERRALS INTO PAF PROGRAMS COME FROM THOUSANDS OF SOURCES, WITH OTHER CHARITABLE NON-PROFIT ORGANIZATIONS TOPPING THE LIST WITH THE GREATEST FREQUENCY OF REFERRALS, AS DOCUMENTED IN THE PAF PATIENT PROGRAM DATABASES. 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: " 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 "PATIENT EMPOWERMENT SERIES", AN EDUCATIONAL WEBINAR SERIES DESIGNED TO TEACH THE FUNDAMENTAL CONCEPTS OF VARIOUS HEALTHCARE/INSURANCE AND/OR ENTITLEMENT PROGRAMS; LIVE AND ON DEMAND " 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. " 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 CONTINUED LATER IN SCHEDULE O (F). |
| FORM 990, SCH A, PART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST | CONTINUATION FROM SCHEDULE O (E). 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, MEETING THE ONE-THIRD TEST FOR MOST OF ITS 23-YEAR HISTORY. 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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