Patient Advocate Foundation

“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.”

“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.”

“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.”

“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.”

“Continued from schedule a (a) 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 and; in certain funds, live in an eligible zip code. The program offers personal service to all patients using call counselors; personally, guiding patients through the enrollment and benefit process as well as online tools that can be used by patients, providers, and pharmacies to make application for assistance. Paf does not consider the identity of any physician, provider, supplier of items or services, donor, drug therapy, services or supplies being utilized or the referral source when assessing whether an applicant is qualified for financial assistance from a paf cpr disease-specific fund. Under no circumstances will paf recommend or refer an applicant or enrollee to any fund donor, provider, supplier, or product. 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 of 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 fy2024/2025, paf's co-pay relief program expanded its impact through the addition of nine (9) new general funds, assisting patients in two (2) new health equity (he) funds and sixty (60) existing funds including: acromegaly, acute myeloid leukemia, alzheimer's disease he, amyloidosis, asthma, bile duct cancer, bladder cancer, breast cancer, breast cancer he, cancer genetic & genomic testing, cervical cancer, chronic obstructive pulmonary disease, coronary artery disease he, covid-19 & post covid conditions, cystic fibrosis, diabetes, diabetes he, diabetes type 2 he, eosinophilic esophagitis, gaucher disease, gaucher disease he, heart failure he, hemophilia, hemophilia he, hepatitis b, hepatitis c, hepatitis c he, hepatocellular carcinoma, hiv, aids & prevention, hiv, aids & prevention he, homozygous familial hypercholesterolemia, lupus, lupus he, melanoma, metastatic breast cancer, metastatic colorectal cancer, metastatic colorectal cancer he, metastatic prostate cancer, mucopolysaccharidosis iii, mucopolysaccharidosis vii, mucopolysaccharidosis vii he, multiple myeloma, multiple myeloma he, multiple sclerosis, multiple sclerosis he, myelodysplastic syndromes, narcolepsy, non-small cell lung cancers, non-small cell lung cancer he, osteoporosis, ovarian cancer, ovarian cancer he, pancreatic cancer, parkinson's disease he, periodic paralysis, prostate cancer, prostate cancer he, psoriasis, psoriatic ar”

“Continued from schedule o (b). In partnership with geographic health equity alliance and nuestras adelante voces, smhn launched the tri-networks cancer prevention community of practice. Ncccp teams from alaska, colorado, mississippi, nebraska, new york, and oklahoma, will participate in an 18-month group learning community accompanied by one-on-one technical assistance to enhance their capacity to implement interventions to reduce cancer-related disparities among populations with low socio-economic characteristics, hispanics, or those in geographically disparate communities. In february 2025, smhn launched its second community of practice titled bridging sectors: transformative tobacco prevention in low ses communities (bridging sectors). Bridging sectors is more than a virtual collaborative learning spaceit is an initiative dedicated to addressing the complex and interconnected challenges faced by communities with low socioeconomic status (ses) characteristics that exacerbate the impact of commercial tobacco use. Bridging sectors unite traditional partners like national and state tobacco control programs (ntcp), tobacco prevention coalitions, and community-based organizations while uniquely engaging non-public health sectors such as social services and housing organizations. Together, we aim to create sustainable tobacco control efforts that promote healthier and safer conditions for communities with low socioeconomic status (ses) characteristics by integrating perspectives from sectors outside traditional public health agencies, developing a richer approach to tackling commercial tobacco use in these communities. At the core of this initiative is a deep commitment to understanding and safeguarding the quality of life for individuals with low socioeconomic status characteristics who use tobacco or are exposed to the harmful effects of second/thirdhand smoke. We recognize that housing environments, access to quality healthcare, and insurance status are intricately connected to commercial tobacco use. Where people live, work, and play profoundly influences their health outcomes, particularly in low socioeconomic communities. The first cohort, "housing for health: an evidence-informed approach to addressing housing and commercial tobacco use: what can be done?" took place january 8, 2025, to july 23, 2025. The cop is designed to equip participants with evidence-informed strategies that tackle the interconnectedness between housing and commercial tobacco use. Whether a representative from a public housing authority, a homeless shelter, or a tobacco control program, the cop is designed to provide participants with the knowledge and tools to mitigate the health risks associated with second and third-hand smoke exposure in housing environments. Through group learning sessions, expert-led webinars, and tailored technical assistance, participants were provided with tools to mitigate the health risks associated with second and their-hand smoke exposure to help housing conditions and promote healthier, tobacco-free communities. Smhn staff are often sought for their experience and expertise. A member of the team was recently selected to join the michigan cancer consortium. In this role, they will provide guidance on the integration of evidence-based intervention to address cancer early detection, treatment, and survivorship among populations with low socio-economic characteristics. Additionally, because of their leadership smhn was selected to facilitate a pre-conference workshop at the 2025 national conference on tobacco or health in august 2025. Other community outreach efforts in atlanta, paf partnered with my style matters for their heritage event, which focused on generational health. Paf also collaborated with the alpha kappa alpha sorority, inc. Psi alpha omega chapter to host "rise up atlanta: tnbc is a serious matter," a community education and resource event centered on tnbc. Additionally, paf created a mobile education display”

“Continued from schedule o (c) patient education & empowerment paf extends its patient services by developing and delivering patient education and empowerment tools with a focus on providing practical advice and guidance to healthcare consumers. These tools aim to enhance individuals' day-to-day experiences with insurance and encourage active engagement within the healthcare system. Paf's educational activities are designed based on the conversations that occur among case managers, patients, and caregivers, focusing on those topics for which patients most frequently seek help. Annually, paf creates, maintains, and disseminates a diverse range of patient education materials and online resources, available in both printed and electronic formats. Paf's educational portfolio encompasses a wide array of subjects, presented in various formats to cater to the preferences and needs of multiple audiences. This includes patients, caregivers, professionals, as well as those directly interacting with the foundation for assistance, and the public accessing the website and engaging with paf. Paf's patient education resources are frequently utilized by other organizations and institutions, who share these materials with their own patients. The foundation curates an extensive library of paf-authored patient educational publications, on-demand webinars, interactive training series, and resource tools. All resources are accessible at no cost. In fy2024/2025, the foundation's patient education and empowerment team successfully published 59 new or revised publications, along with videos, educational webinars, and presentations. Additionally, paf worked on two multi-year educational projects: the patient action council project and the medicare video series. Additionally, paf has conducted a series of focus groups to ensure our materials are updated, clear, and person-centered. Patient advocacy, engagement and education had an ongoing internship partnership with the nyu global public health department, and in fy2024/2025, an nyu intern working with the education team on current projects pertaining to paf's national financial resource directory and paf's education resource library. The nyu intern assigned to the patient advocacy and engagement team worked on the shared decision-making initiative. In fy2024/2025, the department conducted its first impact evaluation survey for the education resource library. 95% of individuals found the erl to be valuable, 80% of the respondents felt that the erl was clear and easy to use, 78% of the respondents felt that the erl provided information that would help them make informed decisions throughout their healthcare journey and 81% of the respondents felt that if they encountered a healthcare challenge in the future, they would come back to the erl to get assistance. In fy2024/2025, paf's most utilized resource was the paf national financial resource directory. Users of the directory conducted a total of 121,476 searches. These searches yielded 6,635,191 matching resources, a 78% increase over last fy, and averaging 55 customized resources per search, a 77% increase over last fy. The most frequently sought-after financial assistance categories were for cost of living and medical and prescription costs. The top 6 assistance types, ranked by search frequency, were: financial assistance support, charitable copayment new and revised patient education publications, audio recordings, educational webinars & presentations new (28) the spotlight: july 2024, new resources to help you write an appeal letter the spotlight: august 2024, paf listens: your feedback shapes our future resources the spotlight: september 2024, paf's new guide helps you make sense of your medication benefits the spotlight: october 2024, big changes are coming to medicare prescription benefits the spotlight, november 2024: open enrollment, your annual health insurance check-up the spotlight, december 2024: a look back at the year the spotlight, janua”

“Continued from schedule o (d) 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 fy2024-2025 included ongoing partnerships on research intervention projects with academic and partners including: the university of north carolina at chapel hill, emory university, fred hutchinson cancer research center, and the university of california irvine. These projects utilize case management as an intervention to address financial and social need. In addition to paf's intervention work, paf continues to partner with scientific and/or academic institutions to develop and analyze survey data that are the cornerstone of paf's peer reviewed publications. This year six articles were published in peer reviewed journals and work was presented twelve times (presentation, podium speeches, posters) at national meetings. Paf's work is documented in the "year in review" (found here). Paf's research evaluation and patient experience team was also involved in a patient-centered project to support the field in integrating patient voices into health policy, care, and research initiatives. A key partnership with michigan oncology quality consortium (moqc) integrated patient perspectives into sdoh screening and response in cancer practices. Paf also served as thought leaders and content experts, as well as key partners in facilitation of outreach and collection of the patient experience on numerous topics including social drivers of health, clinic factors affecting care, and demographic collection at the point of care to advance equity. Paf continues to build partnerships, and these relationships were reflected through partnered projects with norc at the university of chicago, academyhealth, and the university of california at san francisco (siren: social interventions research and evaluation network). Collectively, this body of work serves to further paf's mission by advancing the field's knowledge of the patient's 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 scholarship for survivors program it is common for paf 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 been diagnosed with, or are living with, cancer or a chronic illness. These students have, despite their diagnosis, excelled academically, served the community, and desire to pursue a secondary education. Paf's signature fundraising event for the scholarship program, a promise of hope affair, was held on october 5, 2024. Through this event, generous paf donors helped support 40 scholarships through the scholarship for survivors program for the 2024-2025 academic year. To date, paf has awarded 275 scholarships totaling over one million dollars. Public support percentage the foundation's cumulative public support percentage through june 30, 2025, is 19.62%. 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 pa”

“Continued from schedule o (e) over the last five years, paf's mission has been supported by 2096 donors across all sources of charitable donations. In fy2024/2025, paf received contributions from 542 donors including support from individuals, corporate foundations, government agencies and non-profit organizations. Further in fy204/2025, paf received donations of support from thirty-five (35) non-profit organizations, all 501(c)(3) public charities and private foundations, of which eight (8) were new donors including alzheimer's association, copd foundation, delaware j.c.i senate, fare - food allergy research & education, kyler cares foundation, lucky seven foundation, patient access network foundation, and the dixie foundation inc. These organizations funded grants to paf in support of its case management, patient education, health services research, financial aid funds and co-pay relief programs. In fy2024/2025, paf added, expanded, and maintained several key patient programs with the support of other non-profit organizations. Paf added two (2) new case management programs in fy2024/2025 including the national multiple sclerosis society's case management program in partnership with the national multiple sclerosis society supporting patients with ms navigate insurance, access and affordability issues and kyler cares connect in partnership with kyler cares foundation to assist type i diabetic patients navigating access and affordability issues impacting access to medications, diabetic technology and care. Paf also expanded its financial navigation services in partnership with the pancreatic cancer action network and continued its support for patients with esophageal cancer through the esophageal cancer careline, funded by the esophageal cancer awareness association and the nocc resource navigation program, funded by the national ovarian cancer coalition. Longstanding collaborations also continued, including zero prostate cancer's support of the zero360 case management program, and the als association's support of the als benefit and resource line. Paf maintained its enduring partnership with the american cancer society, which began in 2008, and continued its work with the donna foundation to deliver financial aid and case management for breast cancer patients. Additional support for cancer patients was sustained through partnerships with livestrong via the livestrong fertility program, fuck cancer, and cincinnati cancer advisors. The begin again foundation continued its support for patients affected by toxic shocks paf launched a new financial aid fund that assists type i diabetic patients, though the kyler cares technology grant, access continuous glucose monitors and diabetic pumps through the provision of financial aid. The begin again foundation continued supporting patients with sepsis, ards, and toxic shock through the four financial aid funds. As well as providing continued support of the angel fund, helping with burial/funeral expenses. The national ovarian cancer coalition (nocc) continued to support the two faf's for ovarian cancer patients, mia miracle's continued to support an faf for pediatric brain cancer patients, the ards alliance continued support for ards patients through the sumita dixit recovery fund and one that supports the travel expenses of prostate cancer patients living in oklahoma. 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. 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”

“Continued from schedule o (f) o ec aware o ecog-acrin medical research foundation, inc o fare - food allergy research & education o florida alliance for healthcare value o foundation for sarcoidosis research o friends of cancer research o fuck cancer o givinga foundation, inc. O goldman sachs gives o goodcoin foundation o health resources in action o icer o justgive o kaplan family foundation o kyler cares foundation o langley for families foundation o leukemia & lymphoma society o livestrong foundation o ll12 llc o lungevity foundation o mia's miracles o national committee for quality assurance o national comprehensive cancer network, inc. O national multiple sclerosis society o national network of public health institutes o national ovarian cancer coalition - nocc o norc o omaha community foundation o pancreatic cancer action network o pan foundation o patient access network foundation o patient advocate foundation o patric young foundation o pcori o pga tour charities, inc. O pharmacy quality alliance o phrma foundation o pikes peak united way o s. Sydney deyoung foundation o sharsheret o t. Rowe price program for charitable giving o the ards alliance o the donna foundation o w. Montague cobb nma health institute o winston-salem foundation o young survival coalition o zero prostate cancer o governmental agencies: o centers for disease control and prevention o city of newport news o corporations and corporate foundations o 167 donating corporations and corporate foundations o 51 made donations in fy2024/2025 o academic and research institutions & private foundations o august & rosemary ridolfi irrevocable trust o bernard mcdonough foundation, inc. O bfsc at lsu o blueprint prep o columbia university school of nursing o fishman family foundation o greater national advocates inc. O harvard medical school o high pines foundation o lucky seven foundation o mahan foundation o randolph d. Rouse foundation o robert wood johnson foundation o seeds of faith, inc. O the dixie foundation inc o the mitchell daughters 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 o university of utah o university of washington school of nursing o xavier university of louisiana general public o received memorial, honorary, and general support and contributions from over 459 individuals in fy2024/2025. O received donations from over 1763 individuals over the past 5 years in fy2024/2025, paf received contributions from 542 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 comprises 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, 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 governing the operations with a diverse, yet unified, point of view that will enable the foundation to execute meaningful patient programs, designed to address gaps and health inequities in the current healthcare environment and attract support from a broad range of potential donors. The paf executive board of directors holds fiduciary responsibility and manages and controls the organization and property of paf to the extent vested in them by the paf bylaws. It is the responsibility of the board to ensure the organization is run in a fiscally responsible manner and that all programs initiated and delivered by paf are aligned with the mission of paf. The paf board of directors”

“Continued from schedule o (g) 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 service data and annual impact report. Each patient served by paf needed assistance with access to care and affordability issues, including cost of living challenges that they faced due to their illness. Patients are educated about the availability of the paf programs through many channels including, but not limited to, multi-media (earned and paid), other non-profit, disease specific organizations, providers, pharmacies, social workers, financial counselors, social services, government agencies and other patients served previously by paf. In fy2024/2025, over 1.5 million emails successfully reached paf subscribers with paf news, disease information and public health preferences, with a 44.5% overall open rate. Paf utilizes various promotions and education activities to ensure that there is broad awareness in the general public, and among those healthcare stakeholders caring for the sick and disabled, 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 regular posts on the paf facebook page; inclusive of program and patient resource information. Development and maintenance of paf and cpr websites; inclusive of extensive patient education materials and resource directories/online tools. Routine participation in local, regional, and national outreach events; including exhibiting at conferences, speaking engagements, and training sessions for other agencies. Routine delivery of "the spotlight," an educational series designed to address concepts related to various healthcare/insurance and/or entitlement programs, development and release of paf topic-based story boards ad placements on social channels including facebook and youtube ad and psa placements on iheart radio publishing and dissemination of the paf annual impact report links from and to various non-profit patient organizations websites and paf's websites and online resource tools. Ongoing relationship development and maintenance with disease specific non-profit organizations that serve the patients for which we have programs available to ensure they are connecting patients to our programs as they need our support. Development of the patient partner for equity program and distribution of associated newsletter distribution of public press releases to announce the addition of new patient programs and/or expansion of existing programs. Inclusion in earned media stories; profiles of paf programs and patients served by paf summary in summary, patient advocate foundation embodies all the characteristics of a publicly supported organization, based on the facts and circumstances test described in section 1.170a-9(e) (3) of the treasury regulations. Paf demonstrates, in policy and practice, that its operations are free from the influence and control of its donors, further, there is no evidence that a small group of donors control paf; rather, paf is a diverse, complex patient support organization that has operated as a publicly supported organization. Paf continues to operate congruently with a publicly supported organization, garnering support from a broad cross section of donors, including the government, other public charities, and the general public, with a representative governing body. Paf continues its diligence in seeking new sources of support from the general public as well as other organizations and governmental agencies. Accordingly, the foundation qualifies as a "publicly supported organization as described in section 170(b) (1) (a) (vi).”

“Postretirement benefit changes other than periodic benefits/costs -78,182. No changes were made to the organization oversight process or selection process during the tax year.”

“The organization has not completed the audit required under under uniform guidance, 2 c.f.r. Part 200, subpart f as the 2025 compliance supplement has not been issued as of the filing date. The organization will have the audit completed once the compliance supplement has been issued for 2025.”