Patient Advocate Foundation Inc.

“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) 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 fy2020/2021, 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 fy2020/2021, the foundation administered co-payment assistance to 61,678 qualified patients through the 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 dollars in co-payment awards. Health equity initiative, community outreach & patient engagement the foundation promotes health equity by addressing social needs gaps and social determinants of health at the individual, community, and national level. Broad local and national outreach events address populations with low socio-economic characteristics and focus on communities with high disease morbidity and premature mortality from the leading causes of death. Specific activities focus on tackling social/financial support needs and mitigating barriers that impact access to health services. In 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 assista”

“Continued from schedule o (b) paf he staff provided thought leadership across a variety of forums during this fiscal year from chairing a national workgroup focused on elevating cancer equity; to various webinar presentations on racial disparities and the social determinants of health; to interviews on covid-19 and underserved communities; to articles elevating the impact of unaddressed social determinants of health on populations of color. The evp of health equity and community engagement co-chaired with dr. Robert winn, director, virginia commonwealth university massey cancer center, the inaugural elevating cancer equity workgroup (a partnership among national comprehensive cancer network, national minority quality forum, and american cancer society-cancer action network). The workgroup was tasked with developing policy and practices recommendations to reduce racial disparities in cancer care. Paf evp health equity and community engagement participated in seven webinars highlighting the recommendations from the workgroup reaching over 2370 health professional and healthcare advocates. Additionally, he staff contributed to various interviews that address covid-19 and racial and ethnic minority populations, including "covid-19 vaccinations in underrepresented communities" published online in the february 2021 by the american society for microbiology. Paf he staff was featured in the summer editions of cancer health magazine-the cancer health 25: black lives matter, and in cancer today (a publication of american association of cancer research). 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 public visiting our website and connecting with paf. Paf's patient education materials are routinely utilized by other organizations and facilities who share them with their patients. The foundation maintains an extensive library of paf authored patient educational publications, on-demand webinars, learn from the expert training series, interactive resource tools and all of which are available free of charge to patients. During fy2020/ 2021, the foundation's patient education and empowerment team published 38 new, translated, or revised publications and 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 awards. Paf national financial resource directory - users completed 29,985 electronic searches for resources - 651,853 matching resources were provided to users - 78 resources added, 1,254 resources updated, 142 resources deactivated by paf staff - users searched for financial assistance categories most frequently. The top 8 categories include: medical bills & general financial help, charitable copayment assistance, housing & lodging, affordable options for care, utilities, transportation, other medication assistance and dental care. Patient education content awards - received the 2021 graphic design usa | health and wellness award for our specialty pharmacy guide - migraine matters widget received a merit award in the 22nd annual digital health awards fall 2020 session - national financial resource directory received a bronze award in the”

“Continued from schedule o (c) scholarship for survivors program it is not uncommon for foundation staff to interact with patients and families who are struggling to afford post-secondary education due to the financial burden associated with a chronic illness or life-threatening disease. The scholarship for survivors program was established twenty years ago to assist such individuals by offering educational scholarships to qualified applicants who have suffered (or are suffering) from 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. With paf's signature fundraising event for our scholarship program, a promise of hope affair, being postponed to late 2021 due to the global pandemic, our team pivoted and designed new virtual fundraising campaigns to sustain and grow the scholarship program. Through these community online fundraising initiatives, generous donors to paf helped maintain the existing scholarships and expand the number of students supported through the scholarship for survivors program from thirty in the 2020-2021 academic year to thirty-one for the 2021-2022 academic year. To date, the foundation has awarded 135 scholarships totaling over $823,000. Public support percentage the foundation's cumulative public support percentage through june 30, 2021, is 19.08%. This is above the minimum amount of 10% at which facts and circumstances will be considered by the irs in determining the foundation's ongoing status as a public charity. Paf's ongoing operations, governing structure and broad fundraising activities reflect the hallmark standards of a public charity and as such, support its ongoing classification as such. These facts and circumstances include the following: 1. The foundation maintains its independence from its donors both operationally and from a governance perspective. Donors to paf do not have influence or control over the foundation, its operations or its programming. It is important to note that, by its' very nature, the co-pay relief program, to which charitable donations are made that effect paf's public support percentage the greatest, is required to be independently operated, without the influence or control of its donors per guidance provided by the office of inspector general (oig) in its opinion 04-15. Paf has a deep commitment to compliance with its oig opinion, as is evidenced by its organizational compliance program and ongoing outcomes of both internal and external annual reviews and audits. 2. Paf seeks, and successfully secures, funding for all its programs from a multitude of sources including governmental agencies, other public charities, corporations and from the general public. 3. Paf's executive board of directors is comprised of members with diverse professional backgrounds, representing the interests of the chronically and critically ill segment of the general public served by paf. The members of the paf board of directors have expertise in the fields of healthcare administration, clinical practice and research, higher education, direct patient care, non-profit management, government, patient advocacy, health insurance, technology and law; when combined, the members clearly represent a broad cross section of the views and interests of the community/public. 4. All voting members of the paf board of directors are independent per the director's independence test, based on the irs test for independence that is used to determine the independence of each member of the board of a charitable organization. Per policy, the foundation's board does not include any employee or board members of a donor organization, thus, eliminating the influence of a donor from the governing body. 5. The foundation's support and services broadly benefit the general public, specifically those diagnosed and living with chronic and critical diseases, their families and care teams”

“Continued from schedule o (d) in fy2020/2021, paf added, expanded, and maintained several key patient programs with the support of other non-profit organizations. Paf launched the financial navigation for cancer patients in cincinnati program with support from cincinnati cancer advisors and the esophageal cancer careline with support from the esophageal cancer awareness association. Zero: the end of prostate cancer continued its support of the zero:360 case management program for prostate cancer patients and expanded their support with the creation of the zero drive program, providing transportation grants to prostate cancer patients in iowa, pennsylvania, texas, new york, and florida. The als association continued to partner with paf, providing patient education on insurance benefits and providing case management services. As well, paf continued its partnerships with the american cancer society, a partnership that began in 2013, the pancreatic cancer action network providing services to patients with pancreatic cancer who were seeking treatments based upon their individual tumors and the donna foundation, providing case management and financial aid programs serving breast cancer patients. The wildflower foundation provided support for paf's case management services for the ninth consecutive year. The mahan foundation provided continued support for the mahan foundation financial aid fund supporting patients with acute myeloid leukemia (aml) and the begin again foundation not only continued supporting patients with sepsis, ards, and toxic shock through the leishline financial aid fund but expanded its programming with the opening of the angel fund, helping with burial/funeral expenses. Paf maintains, on its public websites, (www.patientadvocate.org and www.copays.org ), donation pages that the general public uses to make donations to the foundation. Paf development team designed and launched dedicated campaigns within disease communities: pandemic response, oncology, neurology, cardiology, virology, immunology, pulmonology, and rare disease. In fy2020/2021, paf development team continued the "transform a patient's life", a diy fundraising platform for ongoing, online peer-to-peer fundraising campaigns as well as amazon smiles and kroger community programs donation lists. Further, paf maintains clear independence of operations of its programs so to ensure they are designed and operated in a manner that addresses the needs of chronically and critically ill patients in the general population as supported by paf patient needs data. Paf proactively, independently, and without donor influence or control, identifies the need for, and defines and establishes the operational parameters for, each of its disease specific funds in the cpr program consistent with its oig advisory opinion, 04-15, as modified and all published oig guidance that is applicable to charitable patient assistance programs. The process utilized is directed and completed by paf and includes a review and approval by the chair of the scientific committee of the paf board of directors, paf compliance counsel and the governance committee of the paf board of directors. Paf has fully defined 100 disease funds as of the end of 2020. Paf also identifies the need for, defines and establishes the operational parameters for its case management programming, small grant programs and public/patient education programs, free from donor influence or control. The paf board of directors adopted the charitable patient assistance program (cpap) code of ethics that was drafted in 2014-2015 by a collection of organizations who all provide charitable patient assistance similar to that provided by paf through its co-pay relief program. This initiative was led by paf and managed by regulatory counsel from washington, dc. Paf has a governance committee of the board of directors. Adoption of this voluntary code further demonstrates paf's commitment to compliance and independence from donor infl”

“Continued from schedule o (e) o t. Rowe price program for charitable giving o the benevity community impact fund o the donna foundation o the sontag foundation o the wildflower foundation, inc. O the wishlist foundation o tiaa charitable inc. O united way of the capital region o united way salt lake o vanguard charitable o yourcause llc o zero - the end of prostate cancer - governmental agencies: o centers for disease control and prevention o city of modesto o commonwealth of virginia - corporations and corporate foundations o 210 donating corporations and corporate foundations o 66 made donations in fy2020/2021 - academic and research institutions & private foundations o american international college o august & rosemary ridolfi irrevocable trust o begin again foundation o ecog-acrin medical research foundation, inc o fred hutchinson cancer research center o high pines foundation o mahan foundation o randolph d. Rouse foundation o robert wood johnson foundation o saint leo university o the sontag foundation o the university of alabama at birmingham o the wildflower foundation, inc. O unc at chapel hill office of sponsored research o university of california, irvine - general public o received memorial, honorary, and general support and contributions from over 655 individuals in fy2020/2021, a 19.3% increase from the prior fy o received support from more than 160 individual donors and 6 corporate donors in support of staff participation in crawlin' crab virtual 5k race to in 2020, a 32% increase in individual donors over the previous fiscal year. O received donations from over 1711 individuals over the past 5 years in fy2020/2021, paf received contributions from over 758 donors including support from individuals, corporate partners and foundations, government agencies and non-profit organizations. 3. Representative governing body the paf executive board of directors comprised of 21 voting members, and 3 non-voting members, all of whom are nationally recognized experts in the fields of healthcare administration, clinical practice and research, higher education, direct patient care, non-profit management, government/public health, patient advocacy, health insurance, technology, and law. The composition of the board is a demonstration in practice to paf's commitment representing the broad interest, and unique perspectives, of the general public and to govern the operations with a diverse, yet unified, point of view that will enable the foundation to execute meaningful patient programs, designed to address gaps in the current healthcare environment and attract support from a broad range of potential donors. The paf executive board of directors holds fiduciary responsibility and manages and controls the organization and property of paf to the extent vested in them by the paf bylaws. It is the responsibility of the board to ensure the organization is run in a fiscally responsible manner and that all programs initiated and delivered by paf are germane to the mission of paf. The paf board of directors assesses the organizations performance and effectiveness and determines future actions required, if any, to achieve its mission. The board of directors structure also has seven (7) subcommittees that include: executive committee, governance committee, finance & audit committee, compensation and benefits committee, program committee, nominating committee, and building and grounds committee. The full board of directors meets three (3) times per year, to be fully briefed on the activities of the foundation including program initiatives and outcomes, financials and overall organizational growth and functionality. The full board is also supplied with supplemental organizational impact reports twice per year as well as the annual impact report, which is also made publicly available. The finance committee is supplied with financial reports on a regular basis for review and comment and the full executive board receives a full financial reporting”

“Continued from schedule o (f) - 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 - development and release of paf topic-based story boards - ad placements on social channels including facebook and spotify - publishing and dissemination of 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. - distribution of press releases publicly announcing the addition of new patient programs and/or expansion of existing programs. - inclusion in earned media stories; profiles of paf programs and patients served by paf. Summary in summary, patient advocate foundation embodies all the characteristics of a publicly supported organization, based on the facts and circumstances test described in section 1.170a-9(e) (3) of the treasury regulations. Paf demonstrates, in policy and practice, that its operations are free from the influence and control of its donors, further, there is no evidence that a small group of donors control paf; rather, paf is a diverse, complex patient support organization that has operated as a publicly supported organization, meeting the one-third test for most of its 24-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).”

“Continuation of explanation of program services from part iii, line 4c additional virtual outreach events reached more than 1500 women with breast cancer or metastatic breast cancer across chicago, memphis, and other communities through engagement with living beyond breast cancer. Paf he staff provided thought leadership across a variety of forums during this fiscal year from chairing a national workgroup focused on elevating cancer equity; to various webinar presentations on racial disparities and the social determinants of health; to interviews on covid-19 and underserved communities; to articles elevating the impact of unaddressed social determinants of health on populations of color. The evp of health equity and community engagement co-chaired with dr. Robert winn, director, virginia commonwealth university massey cancer center, the inaugural elevating cancer equity workgroup (a partnership among national comprehensive cancer network, national minority quality forum, and american cancer society-cancer action network). The workgroup was tasked with developing policy and practices recommendations to reduce racial disparities in cancer care. Paf evp health equity and community engagement participated in seven webinars highlighting the recommendations from the workgroup reaching over 2370 health professional and healthcare advocates. Additionally, he staff contributed to various interviews that address covid-19 and racial and ethnic minority populations, including "covid-19 vaccinations in underrepresented communities" published online in the february 2021 by the american society for microbiology. Paf he staff was featured in the summer editions of cancer health magazine-the cancer health 25: black lives matter, and in cancer today (a publication of american association of cancer research). In 2020, through two national and seven local outreach events, paf health equity programming reached more than 2,540 patients, caregivers, lay health navigators and nurses during the 2020 fiscal year. Building on its work in chicago in 2019, paf was invited to convene a forum in the southside of chicago, bringing together organizations to respond to the unique needs of their community. This forum included 10 grassroots organizations serving african american and latina women diagnosed with or at risk for breast cancer from communities across the southside experiencing disparities in breast cancer mortality. Through this convening, three priority areas were identified: 1). Caregiver's support; 2) access to care (insurance); and 3). Quality of care. To address an urgent need that was identified during a chicago community conversation on cancer for the development of a catalogue in english and spanish of all the breast cancer support/services that could be easily accessible for women across chicago. Through a local contractor, paf conducted an environmental scan of such resources that were later embedded into paf's national financial resource directory. The directory reflects a search option specific to "chicago" that helps users connect to local resources, as well as the broader array of national resources already in the directory. Health services research the aim of the health services research portfolio of work is to improve the patient experience by studying the patient journey, unmet needs, and the impact that systems and social support interventions have on patient health and wellbeing. Major research, evaluation, and patient experience initiatives in 2020-2021 included partnership on six health services research projects with academic and scientific partners including: university of north carolina, emory university, university of alabama, md anderson, fred hutchinson cancer research center, and the ecog-acrin cancer research group. These projects utilized survey methodology to capture patient experiences and perspectives, and/or case management as an intervention to address financial and social need. Paf's research evaluation and patient”

“Postretirement benefit changes other than periodic benefits/costs 1,090,679.”

“(continued from above) effective january 1, 2021, participants must have been hired on or before january 1, 2009, to be eligible for post-retirement benefits. The removal of employees hired after january 1, 2009, triggered curtailment accounting which accumulated affect reduced the current year post retirement obligation by $414,637 and is included in the net periodic benefit costs.”