annual report - patient services inc

ANNUALREPORT

2017

Patient Services IncorporatedP.O. Box 5930Midlothian, VA 23112

www.patientservicesinc.org800.366.7741

Table of Contents

2 | Patient Services, Inc.

2017 Board and Staff ....................................................................................... 3

Sponsors ........................................................................................................... 4-5

Ways to Support PSI ........................................................................................ 6

2017 Executive Message ................................................................................. 7

Program Development .................................................................................... 8

Government Relations ..................................................................................... 9

Operations ....................................................................................................... 10

PSI Traditional Programs .................................................................................. 11-13

IT Department .................................................................................................. 14

A.C.C.E.S.S.® Program ..................................................................................... 15

Finance Report ................................................................................................. 16

Statement of Activities ..................................................................................... 17

Financials .......................................................................................................... 18-19

Patient Testimonials ......................................................................................... 20-21

About PSI ......................................................................................................... 22

PSI helps chronically ill patients with unaffordable medical expenses.

2017 Board and Staff

2017 Annual Report | 3

Dana A. Kuhn, PhDPresident/Founder

Gary W. CrossBoard Chair

Danielle Nance, MDBoard Vice Chair

Russell E. Phillips Jr., CPA, CVA, MAFF

Board Treasurer

Brian L. Fink, JDBoard Secretary

Resigned 9/2017

Terrie L. Glass, LCSWBoard Member

Mark Edward Mula, RPhBoard Member

Mitch MulaBoard Member

Brian LandryBoard Member

Nick GautreauxResigned 10/2017

PSI Executive Committee

PSI Cross Departmental Staff Members

Ashley LeeExecutive Assistant

Jason KuhnData Analyst Manager

Board of Directors

L-R: Neil Millhiser, General Counsel; Dana Kuhn, Ph.D., President and Founder; Art Wood, Senior Vice President; Michael Herbert, MBA, General Manager

Sponsors


Pharmaceutical, Provider Industries, and Corporate Sponsors

16-27 YearsBaxalta USA, Inc.CVS HealthEastern Pennsylvania Chapter, NHFFactor Support Network

11-15 YearsAmerican Service and ProductBoston Hemophilia Center (BWPO)CSL Behring LLCGenzyme CorporationGrifols USA, LLCHemophilia Association of the

Capital AreaNovartis Pharmaceuticals CorporationNovo Nordisk, Inc.University of Pennsylvania Medical Center

92%of total

expenses were used

to help individuals and families

in need

Donations to PSI in Years

6-10 YearsAcariaHealthAlexion Pharmaceuticals, Inc.ARJ Infusion ServicesBioRxCollation for Hemophilia B, Inc.Dyax CorporationEthical Factor, RXHemophilia of North CarolinaHemophilia Outreach CenterShire Human Genetic Therapies, Inc.

1-5 YearsAccredo Infusion ServicesBiotek reMEDysBIOVERATIVBoehringer Ingelheim Pharmaceuticals, Inc. DDP Pharmacy, Inc.Diplomat Specialty PharmacyHawaii Pacific ImagingHemophilia of Georgia Indiana Hemophilia & Thrombosis Center, Inc. InTouch Pharmacy LLC Kokua Kalihi Valley Comprehensive Family

Services Leadiant Biosciences, Inc. Matrix Health GroupNorthern Regional Bleeding Disorders Center Pharming Group NV RetrophinUS HAE Association, Inc.Vanda Pharmaceuticals, Inc.

Sponsors


Government Sponsors*

Commonwealth of Kentucky18 Years

Commonwealth of Virginia21 Years

South Carolina Department of Health9 Years

*Years of grants awarded to PSI

Alan and Linda Johnson Anne Foster Brian Bishop Camille Curamen Carol Gaylord Carolyn A. Hume Catherine Shea Charlotte Worstall Cindy Udell Connie Deal Cornelia Whittlesey Curtis and Shirley Shipp Dannyl Leslie Moreland Dave and Barbara Strate David and Susan Haupt Delphine French Dennis Sester Donald and Karen Kneifl Dr. Ronaldo D. San Jose Eileen Bostwick Elizabeth Brown Elizabeth Voorhies Dean Enzo and Beth Simmarano Eric Heiden Eugene and Ellen Zmolek Evelyn Mozayeni Frank Lin Freddie Cainglit George Friedland Glenn Alicaya

Hans Schiessl Harry G. Morgan Henry Moehring Inez Hua Jack Fosler James A. & Dolores Damron James and Polly Boyle James J. Russo James Riddel Jamie and Robert Hanrahan Janet Petersen Jean Vosholler Jeffrey and Joanne Hodge Joann Wadley John and Jessica Kelly John Blum John Camiller Jose Corral Joyce B. Ryan June Merritt Karen Napper Kathleen Bishop Kenneth Kahler Kevin Close Lane Hartley Lily Lam Linda Redmond Lowell Bjorklund Maria Curamen Marla Stella

Mary Lou Balog Meryl Topchik Michele West Neil Millhiser Pamela Popovich Paul and Gloria Kissling Peter J. Ledwedge Rebecca Wolf Rev. Alvin E. Tucker Richard E. Bruce Richard S. Harris II Rick Cheng Robert Dalsemer Roxe Anne Gingrich Rudy and Evelyn Alicaya Sandra M. Wise Sandra Sommers Shakiah Asquith Stephen and Kathleen McMullen Steven Stallard Terry and Lawrence Tobin The Segel Foundation The Senkfor Family Foundation Thomas Filsinger Tony Koch Vivian Zuehlke Volker Uhrig Willena Nunn

2017 Evening of Hope Sponsors

Shire Human Genetic Therapies, Inc. ........................GoldCVS Health................................................................SilverOptumRx Inc (BriovaRx) ............................................SilverBioMarin Pharmaceuticals, Inc. ................................SilverAlexion Pharmaceuticals, Inc. ...................................SilverBiotek reMEDys ........................................................SilverCoalition for Hemophilia B, Inc. .............................BronzeAlpha-1 Foundation ................................................BronzeImmune Deficiency Foundation .............................BronzeDDP Pharmacy, Inc. (Drugco Health)......................BronzeAmicus Therapeutics, Inc. ......................................Bronze

2017 Individual Sponsors

Ways to Support PSI


Your Tax-Deductible DonationSince 1989, PSI has been fortunate to receive financial support from thousands of donors who simply want to help chronically ill patients afford the cost of their treatment. In 2017, PSI received its ninth consecutive 4-Star Charity Navigator Rating for being a leading symbol of transparency and accountability. “We always aim to be a fiscally responsible organization while increasing the capacity and outreach of our programs to assist patients in affording life-saving treatment. Our continued success proves our efficiency and leadership in the non-profit community,” said Dana Kuhn, Ph.D., President and Founder of PSI. Thank you to the generous donors who gave to PSI in 2017 who are recognized in this report. It is our hope that others will follow your lead and support our mission in the upcoming years. To provide support, please visit the “Donate” section of our website, www.pateintservicesinc.org.

L-R: Karen Middlebrooks, Coordinator of Program Development; Mandy Herbert, MBA, Director of Community Outreach; Art Wood,

Senior Vice President; Brittany Nicholson, Coordinator of Social Media; Kara Witcoff, Director of Program Development

Ways to GiveDonate online: PSI welcomes donations of all sizes. Your generous gift will help patients pay for expensive health insurance premiums, copayments, travel services, as well as infusion and nursing services. These are all costs that patients would not be able to afford on their own. To make a secure online donation, visit www.patientservicesinc.org.

Donate by mail: To donate by mail, simply mail your check to Patient Services, Inc. at P.O. Box 5930, Midlothian, VA 23112.

Make a donation in someone’s name: An Honorary or Memorial Donation offers a thoughtful way to honor the memory of a loved one or commemorate important occasions while supporting PSI. Your generous donation will directly support PSI’s patient assistance programs, restoring hope and health to someone in need. Contact [email protected] for more details.

Thank You for Your Support!Since 2016, the Program Development Department has grown. Brittany Nicholson joined PSI in May 2017 and filled the position of Coordinator of Social Media. In 2018, Kara Witcoff (pictured left), will officially come on board as PSI’s Director of Program Development.

On behalf of the PSI Board of Directors and staff, the Program Development Department would like to express our sincere appreciation for your generous contributions made in 2017. It is because of donors like you that PSI is able to help patients in their time of need. We truly cherish your support and look forward to providing patient assistance for many years to come.

A Glimpse Into 2018 You may notice that the PSI brand in the Annual Report has changed. In 2017, the Program Development Department began work on a new and exciting look. We encourage you to visit the home page of our website, www.patientservicesinc.org, to view our new brand video. Here you can follow along with the progress made in 2017, as well as the big reveal that occurred in January 2018.

2017 Executive Message


As we look back on 2017, our Board of Directors has provided needed leadership,

insight and wisdom as charitable organizations and healthcare have received much attention. Throughout the year, it seems that three agencies of our government have developed interest in how charities impact the various aspects of healthcare. The U.S. Office of the Inspector General (OIG) promulgated the last of all the patient assistance charities modifications to their opinions as of March 3, 2017. It was discovered that some of the modifications restricted the ability of the patient assistance charities to obtain general patient disease demographic information from companies. Without this essential information, how could we develop programs which would adequately meet the medical and financial access that patients need? Thus, PSI determined that these restrictions were violating the tenants of the First Amendment and began to seek the possibilities of legal relief.

Meanwhile, PSI, along with other charities, continued to be challenged with Department of Justice requests for information. This regulatory agency’s scrutiny of charities sent a “chill” across many pharmaceutical companies resulting in “chilled” donations. Although no charity was charged with any wrong-doing, during the two-year inquiry, the perceptions were harmful to charities, but more poignantly, to patients themselves. We cannot

understand why the government would seemingly seek to destroy the work of charities to help patients access and afford treatments, yet not offer another positive solution to vulnerable patients and families. It makes no sense.

Embarking on the fourth year of the Centers for Medicare and Medicaid Services final rule decision to allow Marketplace insurers to reject healthcare insurance premiums paid by charities on behalf of patients, Rep. Kevin Cramer (R-ND) introduced a revised Access to Marketplace Insurance Act bill (HR 3976). If passed, this bill will allow charities to be included with the federal mandated entities (AIDS Drugs Assistance Programs, Indian Health, and any other state and federal qualified health programs) of which Marketplace insurers must accept premium assistance. Supporting this effort is the Marketplace Access Project (MAP), representing 25 leading national advocacy organizations working together to protect patient premium assistance. We are energizing patients and patient organizations to contact their legislators letting them know the importance of supporting this good piece of bi-partisan legislation. We often perceive ourselves as “David versus Goliath” in this fight to gain this legislation against the opposition of the insurance industry. Thus, we keep seeking the one “stone” that will topple the giant, gaining the life-saving access that patients need. If

ever there was a time for people to join a just cause, now is the time.

PSI continues to be positively recognized by the nation’s leading charitable organization validators – Charity Navigator and GuideStar. Charity Navigator has conferred upon us the highest 4-star recognition for the past 9 consecutive years. GuideStar has recognized PSI for the past 6 years and conferred upon us the platinum rating for the past 2 years. There are few charities that can step into this validation circle of distinction and transparency, and yet PSI continues to exceed in this recognition. PSI is a charity worthy of donations by the public for its responsibility of using at least 92% of its donated funds for direct patient assistance.

As we face 2018, we realize it will be a year of waiting to see if the government will act justly in the best interest of patients, or will cater to the courting of the political action committees, corporations, and special interest groups. May all who read this annual report realize the invaluable good charities provide for sick people in the United States and endeavor to make it known that we as a nation need to “Let Charities Be Charitable.”

Dana A. Kuhn, Ph.D.President and Founder

Trying Times


I would imagine that those of you

reading this report have a family

member, friend, or someone close to

you who has dealt with difficult illness. If

you have, you know how it impacts not only

the individual but also the rest of the family

(as well as others who seek to provide

support for this individual). Have you ever

asked about the costs of the treatment for

those dealing with illness? It can run into

the hundreds or thousands a month! These

are the people who PSI has helped in 2017

and who PSI continues to help.

In 2017, PSI helped 27,000 distinct

patients in over 35 different disease areas.

Many of these patients have told us that

they would not be able to continue their

therapy without PSI’s assistance. As you

can imagine, if that were the case, many

of these patients would literally die due

to lack of treatment. Our donors enable

these patients to receive life-giving

therapies which they otherwise would not

receive. These patients continue to send us

letters (which we try to share with donors)

expressing their deep gratitude for the

help provided.

In 2017, the regulatory environment

created several ongoing challenges. First,

the government seemed to be antagonistic

to charities providing this assistance.

They continue to unnecessarily scrutinize

the help being provided, which creates

a great burden on non-profits due to the

legal costs associated with protecting

the model of patient assistance. Second,

the government has made it increasingly

difficult to have any interaction with donors

or prospective donors. In March 2017, PSI

received its Modification to its positive OIG

Opinion 02-01. Portions of the Modification

have created new and unreasonable

communication barriers, which makes

setting up programs and helping these

patients very difficult, if not impossible.

Despite these challenges, PSI continues

to do everything it can to preserve this

model of patient assistance and overcome

barriers for patients to receive access to

their therapies.

In light of the challenges to helping

patients, there are many donors who have

“stood firm” in committing to do what

is right within the realm of compliance

to ensure that patients have the financial

support they need. We appreciate their

courage and benevolence, as well as their

obvious heart for patients! We appreciate

the patients who have communicated to us

about their difficult situations and gratitude

for the help being received (so that we

can share this with donors, legislators,

and caregivers). Finally, we appreciate

the hard work of the PSI Patient Service

Representatives who work

with these patients every

day to help them in their

time of need.

Art WoodSenior Vice President

Program Development

27,000number of

distinct patients PSI helped

in 2017


The mission of the PSI Government

Relations Department is to improve

access to treatments and therapies

for patients with rare diseases and chronic

illnesses. The staff works to promote

public policies that remove roadblocks and

barriers to quality healthcare for patients.

In 2017, PSI continued to champion

legislation to protect a patient’s right to

receive charitable assistance. Whether a

patient needs assistance for a premium

or deductible or some other cost sharing,

health insurance providers are developing

ways to pare back or even eliminate that

avenue. The federal government gave

health insurance providers the permission

slip to deny assistance from charitable

organizations, forcing patients to rely on

the kindness of insurance carriers which

seldom exists.

Government Relations

James Romano, MPA, MBA, Director of

Government Relations; Kyle Rosner, Government

Relations Associate. Not pictured: Mark Hobraczk, Senior

Associate, Government Affairs and Advocacy

$92.6milliontotal amount of direct program services paid out by PSI

in 2017

In 2017, PSI continued to fight this

issue. PSI brought 40 patient advocates

to Washington, D.C. to ask members

of Congress to sign the Cramer-

Matsui Charitable Assistance Letter to

the Secretary of Health and Human

Services (HHS). This letter requested an

administrative change to the department

policy of allowing the prohibition of

premium and cost-sharing assistance.

This letter obtained the support of 180

members of Congress.

Following that, PSI has championed the

Access to Marketplace Insurance Act

(HR 3976), introduced by Congressman

Kevin Cramer (R-ND). This legislation

would mandate that health insurance

providers operating in the state and

federal exchanges accept health insurance

premium and cost-sharing assistance from

non-profit organizations, places of worship,

and local civic organizations. Introduced in

October, the bill acquired 80 cosponsors.

PSI will keep advocating to pass this

legislation which will guarantee access to

needed treatments.

James Romano, MPA, MBADirector of Government Relations

“Without continual growth and progress, such words as improvement, achievement, and success have no meaning.”

Benjamin Franklin


PSI Operations Department

During 2017, PSI continued to seek

innovative ways to efficiently

assist patients. To provide

faster and more convenient service to

patients, PSI implemented new payment

assistance methods. Patients in eligible

programs are provided assistance cards.

This new opportunity allows patients

to pay out-of-pocket costs associated

with eligible services at the time of

service within program guidelines. In

addition, PSI now offers electronic

deposit for patients who are eligible for

reimbursement. This innovative method

of assistance enhances our turnaround

time for patients. Operationally, our goal

is to provide patients with easy and user-

friendly assistance. This includes the

patient experience from the time of the

application until the patient is receiving

assistance. The patient portals were also

updated to allow patients to quickly

toggle between the different areas of the

portal and manage their PSI assistance.

As we look forward to the upcoming

year, we strive to leverage technological

advancements to provide even more

efficient and user-friendly assistance to

patients receiving PSI assistance. By this

time next year, we hope to implement text

message notifications to patients and a

streamlined renewal process for patients.

Tiara Green, MSEdDirector of Operations and Program Reimbursement

Operations and Program Reimbursement

$4,795our average assistance

amount per patient in 2017


Acaria Health Financial Assistance Average age of patient .......................................................... 29Average income of patient population ....................$21,337.32Average number of dependents ............................................. 2

Adagen Eligibility Determination Average age of patient .......................................................... 16Average income of patient population .................. $25,996.65 Average number of dependents ............................................. 3

Adagen Patient Assistance*Average age of patient .......................................................... 21Average income of patient population ................... $41,054.74 Average number of dependents ............................................. 3

Alpha-1 Antitrypsin Deficiency Copay**Average age of patient .......................................................... 68Average income of patient population ................... $29,106.16 Average number of dependents ............................................. 2

Alpha-1 Premium*Average age of patient .......................................................... 55Average income of patient population ................... $37,421.45 Average number of dependents ............................................. 2

Alpha-1 Premium** Average age of patient .......................................................... 65Average income of patient population .................. $25,533.06 Average number of dependents ............................................. 2

ARJ Financial Assistance Average age of patient .......................................................... 19Average income of patient population ................... $50,967.53 Average number of dependents ............................................. 3

ASAP Financial Assistance Average age of patient .......................................................... 47Average income of patient population .................. $39,838.55 Average number of dependents ............................................. 2

BioTek reMEDys Copayment and Eligibility Determination

Average age of patient .......................................................... 39Average income of patient population ................... $47,423.45 Average number of dependents ............................................. 2

Inherited and Acquired Factor Deficiencies**Average age of patient .......................................................... 54Average income of patient population .................. $23,844.93 Average number of dependents ............................................. 2

Inherited and Acquired Factor Deficiencies*Average age of patient .......................................................... 25Average income of patient population .................. $46,058.31 Average number of dependents ............................................. 3

Boston Hemophilia Treatment Center - 340B Average age of patient .......................................................... 50Average income of patient population ................... $37,081.18 Average number of dependents ............................................. 2

Breast Cancer MRI ScreeningAverage age of patient .......................................................... 42Average income of patient population .................. $48,008.66 Average number of dependents ............................................. 3

Center for Bleeding and Clotting Disorders - 340BAverage age of patient ...........................................................61Average income of patient population .................. $13,665.00 Average number of dependents ............................................. 1

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)*

Average age of patient .......................................................... 49Average income of patient population .................. $30,643.49 Average number of dependents ............................................. 2

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)**

Average age of patient .......................................................... 63Average income of patient population .................... $21,761.14 Average number of dependents ............................................. 2

Chronic Myelogenous Leukemia (CML)**Average age of patient ...........................................................74Average income of patient population ....................$30,497.63Average number of dependents ............................................. 2

Circadian Rhythm Disorders**Average age of patient ......................................................... 57 Average income of patient population ....................$16,691.09 Average number of dependents ............................................. 2

Complement Mediated Disease (CMD)*Average age of patient .......................................................... 39Average income of patient population .................. $48,992.82 Average number of dependents ............................................. 2

Complement Mediated Disease (CMD)**Average age of patient .......................................................... 53Average income of patient population .................. $32,908.26 Average number of dependents ............................................. 2

Corneal Cystine Crystal Accumulation in Cystinosis*Average age of patient .......................................................... 24Average income of patient population .................. $35,793.47 Average number of dependents ............................................. 2

Cystic Fibrosis**Average age of patient .......................................................... 52Average income of patient population .................. $23,955.85 Average number of dependents ............................................. 2

South Carolina Bleeding Disorders Average age of patient .......................................................... 25Average income of patient population ................... $41,184.39 Average number of dependents ............................................. 3

South Carolina Sickle CellAverage age of patient .......................................................... 22Average income of patient population ................................NAAverage number of dependents ............................................. 2

Diplomat Pharmacy Financial Assistance Average age of patient .......................................................... 40Average income of patient population .................. $78,689.00 Average number of dependents ............................................. 3

PSI Traditional Programs (Active Patient Profiles)

*Private Insured**Public Insured


Ethical Factor Copayment and Eligibility Determination

Average age of patient .......................................................... 70Average income of patient population .................... $8,048.00 Average number of dependents ............................................. 1

Exocrine Pancreatic Insufficiency**Average age of patient .......................................................... 65Average income of patient population ................... $31,707.49 Average number of dependents ............................................. 2

Fabry*Average age of patient .......................................................... 37Average income of patient population ................... $45,771.43 Average number of dependents ............................................. 3

Fabry**Average age of patient .......................................................... 47Average income of patient population .................. $27,236.54 Average number of dependents ............................................. 2

Factor Support Network Copayment and Eligibility Determination


Gastrointestinal Stromal Tumors (GIST)**Average age of patient .......................................................... 75Average income of patient population ................... $29,679.25 Average number of dependents ............................................. 2

Gaucher’s Disease*Average age of patient .......................................................... 38Average income of patient population ................... $46,723.18 Average number of dependents ............................................. 2

Gaucher’s Disease**Average age of patient .......................................................... 47Average income of patient population .................. $29,585.26 Average number of dependents ............................................. 2

Hemophilia Center of Western PA - 340BAverage age of patient .......................................................... 47Average income of patient population ................... $26,851.92 Average number of dependents ............................................. 2

Hemophilia of Georgia - 340BAverage age of patient .......................................................... 30Average income of patient population ................... $41,855.52 Average number of dependents ............................................. 3

Hemophilia Outreach Center - Wisconsin 340BAverage age of patient .......................................................... 42Average income of patient population ................... $37,310.17 Average number of dependents ............................................. 3

HAEA Travel Assistance Average age of patient .......................................................... 43Average income of patient population .................. $48,266.45 Average number of dependents ............................................. 2

Hereditary Angioedema** Average age of patient .......................................................... 59Average income of patient population ................... $29,029.25 Average number of dependents ............................................. 2

Hereditary Angioedema*Average age of patient .......................................................... 38Average income of patient population ................... $37,034.99 Average number of dependents ............................................. 3

Hetlioz Patient Support Program*Average age of patient .......................................................... 66Average income of patient population ........................ $789.15 Average number of dependents ............................................. 3

Hypoparathyroidism*Average age of patient .......................................................... 48Average income of patient population ................... $51,071.28 Average number of dependents ............................................. 2

Hypoparathyroidism**Average age of patient .......................................................... 63Average income of patient population .................. $30,362.91 Average number of dependents ............................................. 2

Idiopathic Pulmonary Fibrosis**Average age of patient .......................................................... 75Average income of patient population ................... $40,012.14 Average number of dependents ............................................. 2

Indiana Hemophilia and Thrombosis Center - 340BAverage age of patient .......................................................... 39Average income of patient population ................... $30,597.18 Average number of dependents ............................................. 2

Inhibitors in Bleeding*Average age of patient .......................................................... 21Average income of patient population .................. $50,227.09 Average number of dependents ............................................. 3

Inhibitors in Bleeding**Average age of patient .......................................................... 42Average income of patient population ................... $19,012.29 Average number of dependents ............................................. 2

Insight Imaging*Average age of patient .......................................................... 66Average income of patient population .................. $58,072.60 Average number of dependents ............................................. 2

InTouch Pharmacy*Average age of patient .......................................................... 34Average income of patient population ................... $10,995.89 Average number of dependents ............................................. 1

Kedrion Connect Program*Average age of patient .......................................................... 28Average income of patient population .................. $40,629.49 Average number of dependents ............................................. 2

Kentucky State AssistanceAverage age of patient .......................................................... 44Average income of patient population ............................... NA Average number of dependents ............................................. 2




Kidney Stones*Average age of patient .......................................................... 43Average income of patient population ....................$36,148.04Average number of dependents ............................................. 2

Kidney Stones**Average age of patient .......................................................... 67Average income of patient population ....................$33,189.66Average number of dependents ............................................. 2

Kokua Kalihi Valley Comprehensive Family Services*Average age of patient .......................................................... 55Average income of patient population .................... $6,734.49 Average number of dependents ............................................. 3

Lysosomal Acid Lipase Deficiency*Average age of patient .......................................................... 17Average income of patient population .................. $88,280.23 Average number of dependents ............................................. 5

Lysosomal Acid Lipase Deficiency**Average age of patient ............................................................ 8Average income of patient population ................... $61,159.50 Average number of dependents ............................................. 4

Matrix Health Copayment and Eligibility Determination


Medex BioCare Copayment and Eligibility Determination


Mucopolysaccharidosis (MPS 1)*Average age of patient .......................................................... 15Average income of patient population .................. $53,539.25 Average number of dependents ............................................. 3

Mucopolysaccharidosis (MPS 1)**Average age of patient .......................................................... 17Average income of patient population ................... $32,331.19 Average number of dependents ............................................. 3

NCHS Financial Assistance Average age of patient .......................................................... 47Average income of patient population ................... $20,231.74 Average number of dependents ............................................. 2

Premier Specialty Pharmacy Copayment and Eligibility Determination


Primary Immune Deficiency*Average age of patient .......................................................... 44Average income of patient population .................. $46,338.12 Average number of dependents ............................................. 2

Primary Immune Deficiency**Average age of patient .......................................................... 60Average income of patient population ................... $21,114.07 Average number of dependents ............................................. 2

Pompe*Average age of patient .......................................................... 42Average income of patient population ................... $51,936.38 Average number of dependents ............................................. 3

Pompe**Average age of patient .......................................................... 47Average income of patient population ................... $30,721.14 Average number of dependents ............................................. 2

Pseudobulbar Affect (PBA) and Underlying Neurological Disease Fund**


Pulmonary Hypertension*Average age of patient .......................................................... 49Average income of patient population .................... $57,127.32 Average number of dependents ............................................. 2

Pulmonary Hypertension**Average age of patient .......................................................... 75Average income of patient population .................. $31,346.50 Average number of dependents ............................................. 1

Shire Alpha-1 Deficiency Copay/Coinsurance Assistance*


Sickle Cell Disease (SCD) and Management of Underlying Conditions*


Sickle Cell Disease (SCD) and Management of Underlying Conditions**


University of PA Medical Center - 340BAverage age of patient .......................................................... 48Average income of patient population ................... $19,684.17 Average number of dependents ............................................. 1

Virginia Bleeding Disorders Average age of patient .......................................................... 27Average income of patient population .................. $23,792.05 Average number of dependents ............................................. 2




Over the past few years, Patient Services, Inc. has embraced resilient

growth within its Information Technology Department by continually developing efficiencies and providing support to our staff and patients. To meet this goal successfully throughout each year, the IT Department collectively has been strategic in aligning resources and enhancing services. By doing this, the future becomes today and we’ve broken through the vicious cycles of the past while forging an exciting, innovative future that is both technologically diverse and stable for our constituents and donors.

This past year we’ve implemented a new state-of-the-art phone system that allows for a more stable platform for our patients when they call into our call center. This new partnership has enhanced functionality and increased uptime. We’ve also enhanced our referral portal so that our referral entities can more efficiently submit

applications and upload required documentation. For our patients, PSI has implemented a new payment assistance card so that our patient base has ease of use when paying for approved assistance items.

The Information Technology Department continues to work collectively with all the departments within PSI but especially the Operations Department. This collaborative effort allows us to keep an innovative and entrepreneurial spirit to continually build on our technological platform. We’re looking to the future and remain steadfast with improvements for our patients and donors since this is what they have come to expect and demand.

Looking ahead, we want to continue to forge a seamless and efficient path for our patients and those who partner with us. With innovation everchanging, we will adapt, continue to grow, and become technologically better. In the coming year, we plan on implementing a new

tool allowing us to verify patients’ income during the application process therefore, reducing the required documentation and allowing us to place patients on service even faster. We will also be deploying a text messaging service and mobile application which will allow us to communicate with our patients more efficiently. Lastly, we will offer the option to patients to go fully paperless for those who would only like to receive email correspondence.

Here at PSI, we’ve experienced continual growth over the past few years while building on our current technological platform. We’re looking forward to the future for innovative ideas and efficiencies to implement to better serve you, our patients and donors.

Stacey PughIT Project Manager

PSI IT Department

IT Department


PSI A.C.C.E.S.S. Team

PSI-ACCESS closed 2017 with 79 active

disability cases. Our attorneys appeared at

51 hearings across the country during the

past year, and we resolved a total of 82 claims. A total of

82% of our clients whose claims went to adjudication were

awarded benefits, compared with the national average for

all applicants of just 36%.

With the incidence of disability decreasing in certain

populations due to advances in treatment, we continue to

focus on counseling our clients about workplace issues and

access to health care coverage.

A.C.C.E.S.S.® Program

Our current caseload by disease states that we serve:

Bleeding Disorders ...........................................44%Alpha-1 .............................................................29%Immune Deficiency ............................................25%Pulmonary Hypertension .....................................1%Neurological (ALS) ..............................................1%

Since launching in May of 2013, the PSI-ACCESS

Legal Support Hotline has fielded more than 500

calls, with over 40% of those calls being received

in the past year. The hotline provides expanded

counseling to our core disease state communities

on a range of issues related to disability,

accommodations at school or work, medical leave

and changes in health insurance.

We expect that it will become ever more

challenging to qualify our clients for disability

benefits, as the national trend towards denying

more and more applications continues. Wait times

for resolving these claims are also likely to increase.

There is presently great uncertainty as to how high

risk populations will qualify for or afford health

care. In this changing environment, our goal is to

continue exploring expansion of services to our core

communities (and to new ones) while preserving the

high quality of the assistance we provide.

Bill LeachA.C.C.E.S.S. Supervisor and Attorney

Back Row L-R: Terry Staletovich, Attorney; William Leach, A.C.C.E.S.S. Supervisor/Attorney. Front Row L-R: Carolyn Burke, Receptionist; Kathy Crowe,

Senior Disability Claims Specialist


The Finance Department at PSI

supports the organization in

providing financial assistance

to patients with chronic illnesses,

by using resources effectively and

maintaining efficient processes. To

strengthen this system, we upgraded

to accounting software that better

suits the needs and direction of the

organization. We partnered with a

financial institution that supports

electronic payment methods that

provide funds to our patients and

their healthcare providers in a quick

and seamless manner. In addition,

we redirected investment funds

to better align risk tolerance with

investment objectives. We have also

maintained our diligence in helping

the organization manage operating

costs.

Despite the existence of barriers

created by the regulatory

environment in our industry, PSI

has maintained a solid financial

position. This is due to the continued

support of our donors toward our

mission, and we are very grateful for

their support. In 2017, we provided

financial assistance to 27,000

distinct patients for a total of $92.6

million in direct program services,

providing an average of $4,795 per

patient assisted. Furthermore, 92%

of the organization’s total functional

expenses were spent on program

services to help individuals and

families in need.

Our financial statements and

programs are audited annually by

an independent accounting firm,

and we continually receive an

unqualified audit opinion (the best

opinion available). A copy of our

2017 audited financial statements

and associated communications

can be found on our website at

www.patientservicesinc.org. The financial information below

provides an overview of our financial

performance for 2017.

Michael HurleyDirector of Finance

Finance Report

Summary Statement of Financial PositionDecember 31, 2017 and 2016

ASSETS 2017 2016Current Assets $118,586,318 $102,739,143

Property and Equipment 2,220,755 2,349,261

Other Assets 1,680,543 1,536,166

Total Assets $122,487,616 $106,624,570

LIABILITIES AND NET ASSETSCurrent Liabilities $1,102,362 $978,145

Unrestricted net assets 17,537,574 18,187,043

Temporarily restricted net assets 103,847,680 87,459,382

Total Liabilities and Net Assets $122,487,616 $106,624,570


The financial information reported here is for PSI only and does not contain consolidated subsidiary information. A complete copy of the Consolidated Financial Statements with a certified report from our independent auditor, Keiter, is available by calling 1-800-366-7741 or by visiting our website, www.patientservicesinc.org.

Temporarily Total Unrestricted Restricted 2017 2016REVENUES AND OTHER SUPPORTContributions $9,292,575 $106,875,107 $116,167,682 $94,090,150

Fees for contracted services 98,182 2,105,937 2,204,119 908,658

Interest income 131,059 – 131,059 171,954

Miscellaneous income 75,134 – 75,134 53,950

Gain (Loss) on Investments 553,199 – 553,199 212,340

Net assets released from restrictions 92,592,744 (92,592,744) – –

Total revenues and other support 102,742,893 16,388,300 119,131,193 95,437,052

EXPENSES AND LOSSESProgram services 95,135,999 – 95,135,999 103,470,939

Fund-raising 942,116 – 942,116 1,076,379

Management and general 7,289,248 – 7,289,248 5,383,659

Total functional expenses 103,367,363 – 103,367,363 109,930,977

Uncollectible pledge expense 25,000 – 25,000 160,833

(Gain) Loss on disposal of equipment - – - 10,362

Total expenses and losses 103,392,363 – 103,392,363 110,102,172

Impairment Loss – – – –

Change in net assets (649,470) 16,388,300 15,738,830 (14,665,120)

NET ASSETSBeginning of year 18,187,043 87,459,382 105,646,425 120,311,545

Ending $17,537,573 $103,847,682 $121,385,255 $105,646,425

PSI Accounting&

QA/QC Team

Statement of Activities (2017 and 2016)


Bleeding Disorders

CancerEndocrine

Immunodeficiency

MetabolicNervousSystem

OtherRespiratory

Specialty State Urinary

2.15%

10.95%

.002%

12.49%

2.9% .34%

26.54%

.56%.28%.17%

43.6%

Assistance by Top 15 States

Assistance by Program Area

Financials (Year ended December 31, 2017)

FLCATX

OH

PANC

ILGA

NYMI

MOTN

NJINVA

$8,843,223

$5,614,321

$5,565,752

$4,471,214

$4,334,910

$3,868,110

$3,851,639

$3,671,569

$3,491,471

$2,967,592

$2,560,034$2,515,605

$2,481,162

$2,406,470

$2,300,841

Assistance by CountryU.S.A.......................................... $80,520,039Puerto Rico .................................. $2,300.841Canada ........................................ $5,903,755Virgin Islands ............................... $3,868,110

Total Assistance ..................... $92,592,745


92%Program

Assistance

7%Management

& General

1.0%Fund Raising

2017

2016

2015

2014

2013

2012

2011

2010

$116,142,682

$94,090,150

$127,014,579

$92,828,047

$82,107,344

$61,302,798

$61,955,303

$47,394,216

$2,963,511

$1,346,902

$996,658

$577,294

$1,485,657

$2,214,353

$1,928,235

$3,026,124

Contribution History

Functional Expense

Contributions

Other Revenue

Financials (Year ended December 31, 2017)


* PSI has obtained consent to disclose patient names and stories in all literature and marketing materials. Patients who wish to share their story and/or image are required to sign a legal authorization form granting permission. A patient may revoke their authorization at any time by notifying Patient Services, Inc. in writing.

PSI Friends,

When I was first diagnosed with leukemia (CML) in March 2008, I was stunned when learning the price of this medication needed to save my life. With help from the Vince Lombardi Cancer Clinic, I was connected with PSI. From there I applied and was approved for assistance. I would never be able to afford my life-saving medication, which I must take for the rest of my life, if not for PSI and their donors. I am retired (have been for the past 6 years). Financial assistance from PSI and their donors makes it possible for me to continue with this life-saving treatment and my life. I thank you and pray for the good they are doing.

Best, CML Patient

Dear PSI,

I can’t express how grateful I am for the assistance that PSI has so graciously given to me.

I have Idiopathic Pulmonary Fibrosis, and the medicine is extremely expensive with a co-pay of more than $2,000 per month. There is no way I could afford this medicine without the help from PSI.

My family and I are so very appreciative for this help, as it extends my time with my family.

Many people are in the same boat, living on a fixed income, unable to buy ridiculously priced medication.

God bless PSI for being there for me and giving me a chance for a better and longer life to share with my family.

With sincere respect, IPF Patient

PSI Staff,

I wish to extend my sincerest gratitude to you for your thorough and much needed financial assistance. It seems a lifetime ago that I was FINALLY diagnosed with an extremely rare disease and B cell lymphoma.

I had been a ‘C Level’ manager at several Fortune 100 Companies. My health had been deteriorating over a period of time, and no one knew why. I had undergone more than three major surgeries and still no relief. In the meantime, the federal contract that I was supporting was cut and I was laid-off. I continued paying for my COBRA coverage for as long as I could.

Luckily, ACA was available to me, and although the premiums were high, I only expected to be out of work for a short period of time. However, as my health deteriorated, I was finally diagnosed with a rare disease in August 2014. I went from being a mid-manager at a large government contractor to having to apply for Social Security disability income. The income I used to make is nowhere near to cover my expenses today.

A couple of years ago, I contacted PSI for assistance. PSI’s services have been crucial in helping me afford health insurance due to my rare disease. As publicized in the news, my ACA health insurance premiums have increased in the tune of $400-500/yearly! I am extremely grateful for the insurance premiums that are reimbursed to me. The staff is professional, respectful and a sheer delight to work with. Thank you for your invaluable assistance PSI.

Oncology Patient

Patient Testimonials


Dear PSI,

I discovered a new medication in early 2014. I researched the medication very extensively because it appeared to have promise to help a very serious problem that I had struggled with since July of 1962. I would like you to know that the medication you are assisting me with has truly become a miracle medication for me. It has continued to work consistently and without any problems. It is the only drug of its kind that is available.

I was in an automobile accident when I was 15 and had a severe head injury and was unconscious for 7 days. The aftermath of the severe concussion caused a severe brain fog problem for my entire adult life (I am now 71 years old) until I found this treatment. Between the years of 1962 and 2014, I saw many doctors and had many brain tests, trying many of the latest medications as they became available. Nothing helped until I discovered one medication in 2014. That medication has solved my long term mental fog problems. The mental fog resulted in a lifetime of depression and multiple emotional problems, which at times came close to suicide. My neurologist is amazed at the success of the medication. I tried stopping the medication for 4 or 5 days a couple of times to see what would happen. The result was that the old concussion “mental fog” aftermath started returning after 2 days and was very bad again by 5 days. I began the medication again, and the problems went away as before.

I have 52 years of experience and insight into what professional and amateur athletes are going through as the result of brain concussions. I spent 52 years going through the emotional “hell” caused by a brain concussion. Possibly it could be of help for other concussion victims.

I could not personally afford to buy the medication without financial assistance.

With regards and appreciation, PBA Patient

PSI Staff,

I just wanted to take a few moments to thank you for the premium assistance you have provided. I am an Alpha-1 patient who is currently on infusion therapy. I am 64 years old and have been married for over 40 years. We have 3 children and 4 grandchildren. Life is good!

I was first diagnosed December of 2004 after having reoccurring bouts of chronic bronchitis. After mentioning to my family doctor that my sister had Alpha-1, he suggested that I be tested for it. The test came back positive.

I was gainfully employed with a great medical insurance plan which covered my infusion therapy. However, in January 2008 my health took a negative turn that put me into an early retirement at 54 years old. The cost of my COBRA was outrageous. My Alpha One coordinator suggested I contact an organization called PSI, which may be able to help with premium assistance.

So, I contacted PSI and filled out an application for assistance. The people that I spoke with were very courteous and helpful. After reviewing my application, help was on the way! I am so grateful for the assistance PSI has given us. It has made the quality of life so much better than it would have been. My hope is that they will continue doing the wonderful work of helping others in need. They’re truly a blessing.

Thank you all for everything you do.

Sincerely, Alpha-1 Patient

Patient Testimonials


2017 Assistance Programs

For more than two decades, PSI, a national non-profit charitable organization, has successfully offered a “safety net” to persons living with expensive chronic conditions and

those who fall through the cracks of government healthcare programs, often helping them avoid financial ruin. PSI

provides peace of mind to our clients by:

■ Locating health insurance solutions in all 50 states■ Subsidizing the cost of premiums■ Providing pharmacy and treatment co-payment assistance■ Assisting with Medicare Part D co-insurance■ Providing advocacy with applying for SSI and SSDI through the

PSI A.C.C.E.S.S.® program■ Providing healthcare reform information through our Health

Policy newsletters, daily policy updates on Facebook and Twitter, presentations, and PSI Patient Coalition Advocacy

■ Helping patients get their medications quickly and easily through the PSI Secondary Payment Card Program

■ Providing assistance with travel, infusion and nursing, and ancillary services

• Acaria Health Financial Assistance • Adagen Eligibility Determination • Adagen Patient Assistance - Private Insured• Alpha-1 Antitrypsin Deficiency Copay -

Public Insured• Alpha-1 Premium - Private Insured• Alpha-1 Premium - Public Insured• ARJ Financial Assistance • ASAP Financial Assistance • BioTek reMEDys Copayment and Eligibility

Determination • Inherited and Acquired Factor Deficiencies -

Public Insured• Inherited and Acquired Factor Deficiencies -

Private Insured• Boston Hemophilia Treatment Center - 340B • Breast Cancer MRI Screening• Center for Bleeding and Clotting Disorders

- 340B• Chronic Inflammatory Demyelinating

Polyneuropathy (CIDP) - Private Insured• Chronic Inflammatory Demyelinating

Polyneuropathy (CIDP) - Public Insured• Chronic Myelogenous Leukemia (CML) -

Public Insured• Circadian Rhythm Disorders - Public Insured• Complement Mediated Disease (CMD) -

Private Insured• Complement Mediated Disease (CMD) -

Public Insured• Corneal Cystine Crystal Accumulation in

Cystinosis - Private Insured• Cystic Fibrosis - Public Insured• South Carolina Bleeding Disorders • South Carolina Sickle Cell

• Diplomat Pharmacy Financial Assistance • Ethical Factor Copayment and Eligibility

Determination • Exocrine Pancreatic Insufficiency - Public

Insured• Fabry - Private Insured• Fabry - Public Insured• Factor Support Network Copayment and

Eligibility Determination • Gastrointestinal Stromal Tumors (GIST) -

Public Insured• Gaucher's Disease - Private Insured• Gaucher's Disease - Public Insured• Hemophilia Center of Western PA - 340B• Hemophilia of Georgia - 340B• Hemophilia Outreach Center - Wisconsin

340B• HAEA Travel Assistance • Hereditary Angioedema - Public Insured • Hereditary Angioedema - Private Insured• Hetlioz Patient Support Program - Private

Insured• Hypoparathyroidism - Private Insured• Hypoparathyroidism - Public Insured• Idiopathic Pulmonary Fibrosis - Public

Insured• Indiana Hemophilia and Thrombosis Center

- 340B• Inhibitors in Bleeding - Private Insured• Inhibitors in Bleeding - Public Insured• Insight Imaging - Private Insured• InTouch Pharmacy - Private Insured• Kedrion Connect Program - Private Insured• Kentucky State Assistance• Kidney Stones - Private Insured

• Kidney Stones - Public Insured• Kokua Kalihi Valley Comprehensive Family

Services - Private Insured• Lysosomal Acid Lipase Deficiency - Private

Insured• Lysosomal Acid Lipase Deficiency - Public

Insured• Matrix Health Copayment and Eligibility

Determination • Medex BioCare Copayment and Eligibility

Determination • Mucopolysaccharidosis (MPS 1) - Private

Insured• Mucopolysaccharidosis (MPS 1) - Public

Insured• National Cornerstone Healthcare Services

Financial Assistance • Premier Specialty Pharmacy Copayment and

Eligibility Determination • Primary Immune Deficiency - Private Insured• Primary Immune Deficiency - Public Insured• Pompe - Private Insured• Pompe - Public Insured• Pseudobulbar Affect (PBA) and Underlying

Neurological Disease Fund - Public Insured• Pulmonary Hypertension - Private Insured• Pulmonary Hypertension - Public Insured• Shire Alpha-1 Deficiency Copay/Coinsurance

Assistance - Private Insured• Sickle Cell Disease (SCD) and Management

of Underlying Conditions - Private Insured• Sickle Cell Disease (SCD) and Management

of Underlying Conditions - Public Insured• University of PA Medical Center - 340B• Virginia Bleeding Disorders

About PSI


• Approved for 501 (c)(3) status by the IRS (1992, 1999).

• Registered with Dun & Bradstreet (1992).

• Qualified by Better Business Bureau as a Charitable Organization (1999).

• Four-Star rating with Charity Navigator, America’s largest independent charity evaluator.

• Received a positive opinion from the U.S. Department of Health and Human Services Inspector General (2002).

• Received a positive opinion from CMS to assist Medicare Part D recipients with “Donut Hole” expenses (2004).

• Received Modification to positive OIG Opinion 02-01 in March 2017.

• Approved IRS “Facts and Circumstances” determination (2004).

• PSI’s work affirmed in HHS Office of the Inspector General Advisory Bulletin (2005).

• Awarded the State Pharmaceutical Assistance Program (SPAP) for Virginia and offers Medicare Part D direct assistance counting toward TrOOP assistance to HIV/AIDS patients.

• Developed public-private partnerships with state drug assistance programs beginning in 1996. Provide premium assistance programs with VA, SC and KY.

• Provide Social Security and disability representation to patients in addition to helping patients navigate and obtain Medicare/SSDI through the PSI A.C.C.E.S.S.® Program.

• Became a GuideStar Platinum Preferred Member for being a leading symbol of transparency and accountability (2014).

• Pioneer in patient assistance field.

The Gold StandardAmong Non-Profit Charitable Organizations

P S I M I L E S T O N E S

P.O. Box 5930 | Midlothian, VA 23112 | 800.366.7741www.patientservicesinc.org

“Making the giftof health

a lifetime benefit” ®

annual report - patient services inc

Documents