PATIENT ADVOCATE FOUNDATION
Programs
Program 1 [2021]
FINANCIAL SUPPORT PROGRAMSFOR 17 YEARS, PATIENT ADVOCATE FOUNDATION'S CO-PAY RELIEF PROGRAM (CPR) HAS PROVIDED FINANCIAL ASSISTANCE FOR CO-PAYMENTS, CO-INSURANCE AND DEDUCTIBLES REQUIRED BY A PATIENT'S INSURER FOR MEDICATIONS PRESCRIBED TO TREAT AND/OR MANAGE THE PATIENT'S DISEASE. IN 2021, PAF'S CO-PAY RELIEF PROGRAM EXPANDED ITS IMPACT THROUGH THE ADDITION OF SEVEN (7) NEW FUNDS, ASSISTING PATIENTS THROUGH FORTY-TWO (42) DISEASE SPECIFIC FUNDS INCLUDING ACROMEGALY, ASTHMA, BLADDER CANCER, BREAST CANCER, CANCER GENETIC AND GENOMIC TESTING, CERVICAL CANCER, CHRONIC PAIN, COVID-19,CYSTIC FIBROSIS, 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 SYNDROME, NON-SMALL CELL LUNG CANCERS (NSCLC), OSTEOPOROSIS, OVARIAN CANCER, PANCREATIC CANCER, PERIPHERAL VASCULAR DISEASE, PERIODIC PARALYSIS, PROSTATE CANCER, PULMONARY FIBROSIS, PULMONARY HYPERTENSION, RENAL CELL CARCINOMA, RHEUMATOID ARTHRITIS, SKIN CANCER, SPINAL MUSCULAR ATROPHY AND ULCERATIVE COLITIS.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 2021, THE FOUNDATION ADMINISTERED CO-PAYMENT ASSISTANCE TO 61,678 QUALIFIED PATIENTS THROUGH 42 ASSISTANCE FUNDS AVAILABLE THROUGH THE CO-PAY RELIEF PROGRAM. THE PROGRAM STAFF FIELDED 187,301 TELEPHONE CALLS AND PROCESSED CLAIMS TOTALING OVER $243,000,000 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 533,000 INDIVIDUALS ALLOCATING MORE THAN $1.6 BILLION IN CO-PAYMENT AWARDS. IN 2020, 72,906 QUALIFIED PATIENTS RECEIVED ASSISTANCE THROUGH 28 FUNDS. PAF STAFF FIELDED 255,600 CALLS AND PROCESSED CLAIMS TOTALING MORE THAN $233,000.THE FOUNDATION ALSO ADMINISTERED A SUITE OF SIXTEEN (16) SMALL GRANT PROGRAMS IN 2021 AND TEN (10) IN 2020, 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 2021, PROGRAM STAFF FIELDED 19,092 TELEPHONE CALLS AND SUCCESSFULLY PROVIDED ONE-TIME SMALL GRANTS TO 11,422 PATIENTS, TOTALING $4,175,600 IN FINANCIAL RELIEF. IN 2020, 15,558 PATIENTS RECEIVED FINANCIAL RELIEF FROM 10 FINANCIAL FUNDS, TOTALING MORE THAN $7,800,000. THESE GRANTS RANGED FROM $300 - $1,000 PER PATIENT AND ARE DESIGNED TO NON-MEDICAL EXPENSES, INCLUDING TRANSPORTATION, LODGING, NUTRITIONAL NEEDS, CHILDCARE, AND BURIAL EXPENSES, FACED BY PATIENTS BECAUSE OF THEIR DIAGNOSIS AND TREATMENT. IN 2021, THE FINANCIAL AID FUND PROGRAMS INCLUDE:- AMERICAN CANCER SOCIETY COVID 19 ASSISTANCE FUND: SERVING PATIENTS DIAGNOSED WITH CANCER WHO HAVE BEEN IMPACTED BY COVID-19- COVID CARE RECOVERY FUND: SERVING PATIENTS DIAGNOSED WITH COVID-19 - 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 FUND 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- PAF/TEAM RUBICON COVID-19 EMERGENCY FOOD ASSISTANCE PROGRAM: SERVING PATIENTS WHO HAVE BEEN IMPACTED BY COVID-19, HAVE A DIAGNOSIS OF CANCER, MULTIPLE SCLEROSIS & RHEUMATOID ARTHRITIS AND ARE EXPERIENCING FOOD INSECURITY - SONTAG FOUNDATION COVID-19 EMERGENCY PATIENT ASSISTANCE: SERVING PATIENTS DIAGNOSED WITH BRAIN TUMORS WHO HAVE BEEN IMPACTED BY COVID-19 - FLORIDA DRIVE- SERVING PATIENTS TO PROVIDE TRAVEL SUPPORT WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER AND RESIDE IN FLORIDA. - IOWA DRIVE FUND- SERVING PATIENTS TO PROVIDE TRAVEL SUPPORT WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER AND RESIDE IN IOWA.- NEW YORK DRIVE FUND- SERVING PATIENTS TO PROVIDE TRAVEL SUPPORT WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER AND RESIDE IN NEW YORK. - PENNSYLVANIA DRIVE FUND- SERVING PATIENTS TO PROVIDE TRAVEL SUPPORT WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER AND RESIDE IN PENNSYLVANIA. - TEXAS DRIVE FUND- SERVING PATIENTS TO PROVIDE TRAVEL SUPPORT WHO ARE BEING EVALUATED, UNDERGOING TREATMENT, OR RECEIVING FOLLOW UP CARE FOR PROSTATE CANCER AND RESIDE IN TEXAS.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$254.2MProgram 2 [2021]
NON-PROFIT PROGRAM ADMINISTRATION AGREEMENTSIN 2009, THE FOUNDATION ENTERED INTO A TRANSPARENT SERVICE ADMINISTRATION AGREEMENT WITH A NATIONAL NONPROFIT ORGANIZATION. THE FOUNDATION HAS BEEN ENGAGED TO PROVIDE FULL SERVICE, TRANSPARENT ADMINISTRATION SERVICES TO QUALIFIED PATIENTS THAT ENTER THEIR CO-PAY ASSISTANCE AND PATIENT FINANCIAL AID PROGRAMS. THE FOUNDATION CONTINUED TO PROVIDE THIS CONTRACTUAL SERVICE DURING 2021. THE FOUNDATION ADMINISTERED SERVICES TO 42,133 AND 66,510 PATIENTS IN 2021 AND 2020, RESPECTIVELY, THROUGH THIS SERVICE AGREEMENT.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$6.3MProgram 3 [2021]
CASE MANAGEMENT SERVICESFOR A QUARTER OF A CENTURY, THE FOUNDATION HAS PROVIDED CASE MANAGEMENT INTERVENTIONS ON BEHALF OF CRITICALLY OR CHRONICALLY ILL PATIENTS NATIONALLY; ENABLING THEM TO CONNECT WITH, AND MAINTAIN ACCESS TO, PRESCRIBED HEALTHCARE SERVICES AND MEDICATIONS, OVERCOME INSURANCE BARRIERS, LOCATE RESOURCES TO SUPPORT COST-OF-LIVING EXPENSES WHILE IN TREATMENT, EVALUATE AND MAINTAIN HEALTH INSURANCE COVERAGE AND BETTER MANAGE, OR REDUCE, THE OUT-OF-POCKET MEDICAL AND COST OF LIVING DEBT THEY FACE. PAF PROVIDES ONE-ON-ONE PROFESSIONAL CASE MANAGEMENT SERVICES, WORKING ALONGSIDE PATIENTS, THEIR LOVED ONES, AND THEIR CARE TEAMS, OFTEN TAKING THE LEAD TO RESOLVE COMPLEX HEALTHCARE ACCESS AND AFFORDABILITY CHALLENGES ENCOUNTERED IN THE HEALTHCARE SYSTEM. CASE MANAGEMENT SERVICES ARE PROVIDED AT NO COST TO PATIENTS AND THEIR FAMILIES. DURING 2021, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY WORKED WITH OR ON BEHALF OF 21,336 INDIVIDUALS. THESE PATIENTS REPRESENTED 630 UNIQUE DISEASES AND REQUESTED ASSISTANCE 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 ISSUES. THIS WORK TRANSLATES TO NEARLY 294,386 UNIQUE CONTACTS ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT SERVICES. PAF ALSO PROVIDED NEARLY 8,500 PATIENT EDUCATION PUBLICATIONS TO THE PATIENTS SERVED BY CASE MANAGEMENT. PAF PROVIDES THESE SERVICES THROUGH A COMPLIMENT OF 31 UNIQUE PROGRAMS.DURING 2020, THE FOUNDATION'S CASE MANAGEMENT STAFF DIRECTLY INTERVENED ON BEHALF OF 21,380 INDIVIDUALS. THESE PATIENTS ARE COLLECTIVELY LIVING WITH 735 UNIQUE DISEASES AND REQUESTED ASSISTANCE WITH AN AVERAGE OF TWO ISSUES THAT WERE CREATING OBSTACLES TO CARE. ON AVERAGE, CASE MANAGERS MADE 15.7 CONTACTS ON BEHALF OF EACH CASE TO RELEVANT STAKEHOLDERS TO BRING RESOLUTION TO THE PATIENT'S ACCESS ISSUES. THIS TRANSLATES TO NEARLY 335,000 UNIQUE CONTACTS ON BEHALF OF PATIENTS AND FAMILIES RECEIVING CASE MANAGEMENT INTERVENTION SERVICES. PAF PROVIDED THESE SERVICES THROUGH A COMPLIMENT OF 27 UNIQUE PROGRAMS.PATIENT EDUCATION AND EMPOWERMENTPAF 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, TOMEET 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 2021, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM PUBLISHED 38 NEW, TRANSLATED, OR REVISED PUBLICATIONS, PRODUCED 1 VIDEO AND 36 EDUCATIONAL WEBINARS. PAF ALSO SUPPORTED 4 MULTI-YEAR EDUCATIONAL PROJECTS INCLUDING HEALTH INSURANCE LITERACY, MIGRAINE MATTERS AND MATTERS OF THE HEART. PAF ALSO RECEIVED 3 INDUSTRY AWARDS FOR ITS PATIENT EDUCATION MATERIALS.DURING 2020, THE FOUNDATION'S PATIENT EDUCATION AND EMPOWERMENT TEAM PUBLISHED 43 NEW OR REVISED PUBLICATIONS AND RECORDED AND RELEASED 9 WEBCAST PRESENTATIONS. PAF ALSO LAUNCHED 4 4 MULTI-YEAR EDUCATIONAL PROJECTS INCLUDING HEALTH INSURANCE LITERACY, MIGRAINE MATTERS AND MATTERS OF THE HEART.HEALTH EQUITY INITIATIVE, COMMUNITY OUTREACH AND PATIENT ENGAGEMENTTHE 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 SEPTEMBER 2020, PAF ENTERED YEAR THREE OF ITS 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 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. 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 14 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. THE BLUEPRINT FOR ACHIEVING HEALTH EQUITY WILL BE DESIGNED AS A GUIDING DOCUMENT TO REFLECT SPECIFIC OBJECTIVES, ACTIVITIES, AND PERFORMANCE MEASURES TO ACCESS PROGRESS ACROSS THE ORGANIZATION IN ADDRESSING HEALTH EQUITY. THE BLUEPRINT IS SLATED TO BE RELEASED DURING THE 2021-2022 FISCAL YEAR. THE CONTENT OF THE BLUEPRINT WILL BE DEVELOPED BASED ON INPUT FROM THE HEAG AND STRATEGIC EXECUTIVE TEAM WITH SPECIFIC OBJECTIVES AND ACTIVITIES PROPOSED BY THE HEAG FOR THREE STRATEGIC FOCUSED AREAS IDENTIFIED BY THE HEAG: EDUCATION AND LEARNING; CULTURE AND VALUE; COMMUNICATIONS AND MESSAGING. ADDITIONALLY, THE BLUEPRINT WILL REFLECT THE ORGANIZATIONAL EQUITY PERFORMANCE GOALS FINALIZED BY THE STRATEGIC EXECUTIVE TEAM. THE COMMUNITY ENGAGEMENT MODEL USED BY PAF CONTINUES TO YIELD POSITIVE RESULTS, THIS WAS MOST EVIDENT DURING THE PANDEMIC. THE ORGANIZATION'S COMMUNITY PARTNERSHIPS WERE AN INVALUABLE ASSET THAT ALLOWED PAF TO QUICKY PIVOT FROM IN-PERSON EVENTS TO ONLINE ACTIVITIES FACILITATING THE NECESSARY COMMUNICATION PIPELINES TO ENSURE THAT COMMUNITY MEMBERS WERE AWARE OF THE CORE SERVICES PROVIDED BY PAF AND EXPANDED COVID-19 SPECIFIC RESOURCES. TO CONTINUE OUTREACH AND ENGAGEMENT EFFORTS PAF PARTNERED WITH FIVE (5) OF THE BETTER TOGETHER PARTNERS SERVING CHICAGO SOUTHLAND COMMUNITIES (ROSELAND, SOUTH SHORE, SOUTH CHICAGO, AND WEST ENGLEWOOD) TO CONTINUE TO REACH AFRICAN AMERICAN AND LATINA WOMEN WITH BREAST CANCER, THEIR CAREGIVERS AND THOSE SEEKING MAMMOGRAPHY SCREENING. PAF WAS ABLE TO REALIGN BUDGETS ORIGINALLY INTENDED FOR SPACE RENTAL TO DIGITAL PLATFORMS TO HOST EDUCATIONAL FORUMS USING FACEBOOK LIVE, ZOOM, AND YOU TUBE FOR CONTENT HOSTING AND DISTRIBUTION. PAF ALSO LEVERAGED HE DISTRIBUTION CHANNELS FOR PAF COVID-19 EMERGENCY FOOD ASSISTANCE PROGRAM. FOOD INSECURITY IMPACTING PATIENT ABILITY TO ACCESS CARE HAD PREVIOUSLY BEEN IDENTIFIED IN THE PROCEEDINGS FROM THE 2019 PAF CHICAGO COMMUNITY CONVERSATION ON CANCER; THESE NEEDS WERE NOW FURTHER EXACERBATED BY THE PANDEMIC. AS A RESULT OF A MYRIAD OF COLLABORATIVE HE DISSEMINATION EFFORTS, MORE THAN 440 IMMUNOCOMPROMISED INDIVIDUALS WHO WERE IMPACTED BY COVID-19 AND LIVE IN CHICAGO WERE LINKED TO CRITICAL FOOD RESOURCES.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$5.6M
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