The Assistance Fund (TAF) 2021 Impact Report

RESILIENCY AND HOPE 2021

Artist: Faith Jordan, Pulmonary Hypertension Copay Assistance Program

Mission

To provide underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.

Vision

The Assistance Fund envisions the day when no person goes without treatment because of an inability to pay.

Values

This Impact Report is dedicated to Kenya McNaught, who passed away in 2021. Kenya was a patient in our Idiopathic Pulmonary Fibrosis Copay Assistance Program and a winner of our 2021 Kaleidoscope of Life Art Contest.

Artist: Kenya McNaught, Idiopathic Pulmonary Fibrosis Copay Assistance Program

Message From the President and CEO

Every day, I am inspired by the stories of the people we serve. In the face of lifealtering diagnoses, they display resilience, tenacity, and hope. And as we entered the second year of the COVID-19 pandemic, the strength of our patients—who are particularly vulnerable to the effects of the virus—was even more apparent. Their resilience in the face of hardship is the theme of our 2021 Impact Report. In May 2021, we asked our patients to submit their artwork to our inaugural Kaleidoscope of Life Art Contest. The response was incredible—we were delight-

ed to receive an overwhelming number of stunning submissions. Our panel of judges struggled to narrow down the finalists.

In this report, we feature the contest winners’ stories. You will meet Phyllis, who is living with cystic fibrosis and draws life-like portraits of friends and family members; Marieke, a retired interior designer whose Parkinson’s disease diagnosis doesn’t stop her from creating vivid collages; and Faith, who is living with chronic fatigue syndrome and pulmonary hypertension but finds hope through painting. The report also features a moving

story about our top individual contributor, Alicia, whose son, Norman, receives financial assistance from The Assistance Fund (TAF) for his paroxysmal nocturnal hemoglobinuria treatment. This is just a snapshot of the moving stories we hear from the thousands of patients and families we have the honor of serving each year.

While TAF’s vision is to see the day when no person goes without treatment because of an inability to pay, we were honored to continue to serve as a critical safety net for 55,194 people in 2021. In addition to receiving nearly $297 million in donations and operating 74 disease programs, we had several other notable achievements.

TAF’s Advocacy team in our Washington, DC, office continues to advocate on Capitol Hill and with the Executive Branch for patients to have access to all clinical care, diagnostic testing, therapy, and treatment they require; and to ensure they receive such at an out-of-pocket cost within reach, regardless of socioeconomic status. In fall 2021, the team launched its first campaign from our new Advocacy Action Center, encouraging TAF advocates to contact their members of Congress to support Medicare Part D

reforms. As a result of the campaign, TAF Advocates sent more than 1,000 letters across all 50 states and Washington, DC.

On the operations front, the focus remained on providing best-in-class service for patients. In 2021, the Operations team undertook several quality initiatives to enhance our annual Reenrollment process and overall caller experience, including implementing innovative technology to reduce telephone hold times and permanently expanding call center hours. Finally, we published a comprehensive Corporate Compliance Plan and launched an employee Compliance Champions program, both of which serve to foster a culture of compliance throughout every facet of our operations.

As always, we are tremendously grateful to our generous donors who make our work possible. With your support, we are able to have a positive impact on the lives of many people living with lifethreatening, chronic, and rare diseases. Thank you.

MARK P. MCGREEVY President and CEO

This is just a snapshot of the moving stories we hear from the thousands of patients and families we have the honor of serving each year.

Message From the Board Chair

There is a reason why The Assistance Fund continually receives top ratings from America’s Favorite Charities, GreatNonprofits, GuideStar, and ImpactMatters, and is featured in the annual Forbes and NonProfit Times top 100 charities lists. It’s because since TAF’s founding in 2009, it has been resolutely committed to ensuring patients living with life-threatening, chronic, and rare diseases have access to their critical treatment. And it achieves this feat for thousands of children and adults each year.

Unlike the boards of so many nonprofit organizations, the TAF Board of Directors is volunteer based. Make no mistake: the members of the Board are busy; each of us has a demanding career and families who require our attention. But we choose to lend our expertise and time to TAF because we believe wholeheartedly in its mission of providing underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.

And we know the need is growing, particularly for people who are underinsured: those who have health insurance but cannot afford their out-of-pocket medi-

cal costs. According to a 2021 survey by The Commonwealth Fund, 21% of Americans—more than one in five—have such high out-of-pocket costs and deductibles relative to their income that they could not get affordable care. A 2021 report from the Urban Institute illustrated just how widespread the hurdles are. Using pooled 2018 and 2019 data from the Agency for Healthcare Research and Quality's Medical Expenditure Panel Survey, researchers found that nearly 13 million adults delayed or did not get needed prescription drugs because of the cost, including 2.3 million el-

derly Medicare beneficiaries and 3.8 million nonelderly adults with private insurance, 1.1 million with Medicaid, and 4.1 million who were uninsured at any point during the year. As our economy continues to feel the impact of the COVID-19 pandemic, these numbers will likely get worse before they get better.

But there’s good Assistance Fund is here to help fill in the gaps. Beyond providing patients and their families with much needed financial support to access their critical treatment, TAF is

making sure the patient voice is heard in Washington by advocating for policies that improve patient access to clinical care, diagnostics, therapies, and treatment that allow patients a better quality of life. TAF is educating key opinion leaders in Congress and the executive branch about our patients’ experiences and ensuring they understand the crucial role independent charitable patient assistance organizations play in securing patients’ access to treatment. And TAF is partnering with like-minded health and patient advocacy organizations to identify patient challenges and devise innovative solutions.

Patients’ barriers to critical treatment show no sign of waning—this will be a marathon, not a sprint. But The Assistance Fund has proven time and again that it is here for the long haul, and it will not quit until its vision is realized. On behalf of the entire Board of Directors, I would like to express my gratitude to the donors, providers, advocates, and the entire TAF team for improving the lives of thousands of patients and their families.

LAWRENCE HATCH Chair, Board of Directors

But The Assistance Fund has proven time and again that it is here for the long haul, and it will not quit until its vision is realized.

Just navigating Parkinson's disease is stressful. TAF has removed the worry from high out-ofpocket expenses with their assistance.

— Jean and Dave, a TAF Patient

One day, Marcus asked, ‘Would you ever draw me?’ So, this picture became his Christmas present.

Phyllis’ Story, Cystic Fibrosis Copay Assistance Program

in pastoral counseling, and throughout her career she has created art that inspires and heals.

After her friend, Shonda, lost her son, Phyllis drew a portrait of Shonda’s kids. In it, her daughter, Quinn, sits next to her brother, her head on his shoulder.

“If it had not been for TAF, I never would have started my treatment,” she said. “It was very expensive.”

TAF’s program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease, such as copays, deductibles, and coinsurance. It took just minutes for Phyllis to apply.

“That’s not who he is,” Phyllis said. “He’s just ornery and fun. I tried to capture just a tad of that orneriness.”

During the pandemic, Phyllis continued to paint, write, and teach. Thanks to Zoom, she taught worship courses and worked on a new book about the Beatitudes. She recently expanded her artistic talents, too, taking a course on watercolors.

Elbert Hubbard once said, “Art is not a thing. It is a way.” From an early age, Phyllis chose art as the easiest way to express herself.

“When I was little, the best gift I could get was a pencil and a piece of typing paper,” she said. “If I had to explain something, it was always easier to draw it.”

Drawing often connects with Phyllis’ second love: people. Though Phyllis retired from full-time teaching in 2017, she still works with students, writing and teaching worship at St. Paul School of Theology. Phyllis holds a doctorate

“I just like to be with the people I love,” Phyllis said. “Even though I don’t have a lot of stamina, I can do most things I want, like painting and drawing. It doesn’t get any better than that.”

Phyllis had spent years with breathing challenges, which became worse after she experienced a heart attack in 2017. And though her heart began to heal, her breathing only worsened.

“I could hardly go minutes without wheezing and coughing,” she said. “I was having real difficulties.”

Doctors at National Jewish Hospital tried various treatment as they searched for the source of her breathing struggles. In 2020, they diagnosed her with cystic fibrosis and encouraged her to apply for The Assistance Fund’s (TAF’s) Cystic Fibrosis Copay Assistance Program to assist with the cost of treatment.

“All of a sudden, I wasn’t on a five-yearplan anymore,” she said. “I could do things and plan for the future.”

Previous treatment left Phyllis with a host of side effects. But since beginning her new treatment two years ago, Phyllis said her cough has significantly improved and her life has experienced a “turnaround.”

“This new treatment, my gosh, what a difference,” Phyllis said.

In 2021, Phyllis heard about TAF’s Kaleidoscope of Life Art Contest. She submitted a picture of her grandson, Marcus, and his dog Zeus, from when Marcus was eight.

“He really loves Zeus,” she said. “One day, Marcus asked, ‘Would you ever draw me?’ So, this picture became his Christmas present.”

Phyllis said she didn’t want to do a typical “head and shoulder shot” because it wasn’t reflective of her grandson’s personality.

“I just branched out,” Phyllis said. “I'd never tried that before, but I really enjoy it.”

Phyllis is committed to taking things one day at a time. She credits TAF with helping her breathe easier, both figuratively and literally.

“I so appreciate the people at TAF,” Phyllis said. “No one could have been more supportive, kind, and encouraging.”

Phyllis and her husband, Paul.

After Phyllis' friend, Shonda, lost her son, she drew a portrait of her two children. Shonda's daughter, Quinn, rests her head on her brother's shoulder.

If it had not been for TAF, I never would have started my treatment.

Marieke’s Story, Parkinson’s Disease Copay Assistance Program

Moving around has always been part of Marieke’s lifestyle. Since she was a child, Marieke has lived in several US states and on two continents—she was in Berlin when the wall came down.

“That was an exciting time in history,” Marieke said.

This year, she’s planning to relocate with her husband, Scott, from Central Florida to St. Augustine. At age 73, Marieke said she does get tired, but isn’t slowing down.

“I don't have any fears of moving,” she said. “It’s kind of exciting. I've been fortunate in my lifetime to see a lot of different areas.”

Once settled, Marieke plans to connect and grow St. Augustine’s Parkinson’s disease support groups. She leads four different groups where she shares her story and ensures people get the care they need.

“It’s almost a full-time job,” she said. “It helps you know you're not alone.”

Marieke and her husband, Scott.

Marieke has lived with Parkinson’s disease for more than 10 years. She said helping others makes a huge difference in her journey.

“I have to have faith in what I can do to make a difference,” Marieke said.

In 2019, Marieke’s movement disorder specialist started her on a new treatment regimen. To help with the cost of her care, the specialist directed Marieke to The Assistance Fund’s (TAF’s) Parkinson’s Disease Copay Assistance Program.

and participates in an organization that provides educational scholarships to underserved women. And this year, Marieke took up collage-making.

“It’s the strangest thing,” she said. “You kind of throw some things together and it comes along. That’s why I like it so much.”

She submitted one of her first collages to TAF’s 2021 Kaleidoscope of Life Art Contest. The piece, she said, was inspired by the promise the future may hold.

“Creating art is happiness,” Marieke said. “I liked how that piece turned out!”

“The cost of my treatment was insane,” she said. “It’s sad—that medication has made a big difference.”

TAF’s program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease, such as copays, deductibles, and coinsurance. It took just minutes for Marieke to finish her application.

“My specialist and I were amazed,” Marieke said. “I couldn't believe how quickly I could apply.”

When she’s not leading her support groups, Marieke’s days are busy. She walks her dog, attends physical therapy,

Marieke credits her interest in collages with her art studies and career as an interior designer. The job, she said, taught her a lot about people.

“My philosophy is to find out who you are and express that in your home,” she said.

“Be confident and do that!”

During the pandemic, Marieke’s involvement with support groups and volunteering have allowed her to continue working with and serving others. Though she sometimes feels burned out, Marieke said, it continues to give her meaning.

“I'm blessed by helping people,” Marieke said. “It makes all of this have a purpose.”

I have to have faith in what I can do to make a difference.

Faith at an art show, 2016.

Faith’s Story, Pulmonary Hypertension Copay Assistance Program

When Faith graduated from the University of Florida with a degree in set design, she dreamed of a life in performing arts. Faith’s dreams led her to both intern at the world-renowned Julliard School and teach dance with Fred Astaire Dance Studios.

“It was one of the most challenging things I've ever done,” Faith said.

Faith continued to teach dance as long as she could, even after she was diagnosed with chronic fatigue syndrome. More recently, Faith has continued her life-long interest in art by painting, aiming to finish at least one piece a week.

“Often, I'm just trying to create a pretty picture,” Faith said. “Afterward is when I see a lot of meaning in it. It’s kind of unconscious.”

Her paintings have become a successful small business. In total, Faith has sold 117 paintings—canvas and watercolors— through her online Etsy account and Facebook page. The inspiration, she said, comes from sticking to the basics.

“I don't like trying to paint things too literally,” Faith said. “I just use a picture and let it go where it goes.”

In addition to living with chronic fatigue syndrome, Faith has pulmonary hypertension. A chronic disease of the lungs and heart, she often struggled to breathe before receiving treatment.

“I could barely walk up and down the street,” she said. “Just sitting up trying to paint was tiring. I had to be on oxygen all the time.”

To afford her treatment, her doctor suggested contacting The Assistance Fund for assistance. TAF’s Pulmonary Hypertension Copay Assistance Program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease, treatment like the one Faith relies upon.

Faith, her husband Scott, and their cat, Pooky.

Faith with her family.

If it wasn't for the treatment, I might not be able to do my art.

“It costs a lot of money,” Faith said. “If it wasn't for the treatment, I might not be able to do my art.”

Faith said her medication has made a significant difference and allows her to be more active.

“I feel pretty normal,” Faith said. “I'm able to go to the store, do errands, housework, and my art.”

Last year, Faith heard of TAF’s art contest and entered a piece she’d done for a friend. She said the piece symbolizes moving forward and having hope in her life.

“I’ve had a trend of getting better with my health,” she said. “It has a lot of meaning for me.”

Off toward the sunset is a runner— something meaningful to her. Before she was diagnosed with pulmonary hypertension, Faith loved going for runs. She said it’s symbolic of moving forward.

“I don't know if I'll run again in this life, but I believe in heaven,” Faith said.

“It represents hope for me that I will someday run again.”

Alicia and Norman’s Story, Paroxysmal Nocturnal Hemoglobinuria Financial Assistance Program

“He’s not suffering, he’s just anemic,” she said. “Once he gets the bone marrow transplant and does his program, we hope he'll have a full recovery.”

To help with the cost of treatment, Alicia and Norman’s local pharmacy referred them to TAF’s Paroxysmal Nocturnal Hemoglobinuria Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease.

“The treatment costs a lot of money,” Alicia said. “His injections are $400,000 a year, and that doesn’t count his platelet medicine.”

While the COVID-19 pandemic has been a time of terrible loss, it has also been a period of tremendous generosity. According to Giving USA, charities received nearly $500 billion in donations during COVID’s first year. For Alicia, an individual contributor to The Assistance Fund, donating was personal.

“TAF was the one that helped with Norman’s condition,” she said. “I don’t think we know the scope of all TAF’s done for our family.”

In 2021, Alicia and Norman’s family wanted to pay it forward. Regular tithers, they donated to The Assistance Fund to help other families in need.

“TAF has helped our kid a lot,” she said. “We started giving to TAF each month.”

Growing up just outside Nashville, Tennessee, Norman was a typical, healthy kid. That all changed in 2020 when Norman was 20 years old, and his blood pressure dropped so low that he had to go to the hospital. Doctors ran tests and made a difficult discovery.

“Norman’s body just stopped producing bone marrow,” his mom, Alicia, said. “We didn’t know what happened.”

The doctors suspected it was cancer and started Norman on treatment to create new bone marrow. When that didn’t work, he was officially diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disease. Norman was placed on a waitlist for a bone marrow transplant.

Throughout the journey, Alicia has remained positive.

Each month, Alicia ensures Norman’s bills are paid and helps him submit documentation to continue receiving TAF assistance.

“I don’t even know if he knows the enormity of his bills,” she said. “I don’t want him to worry about that.”

Since beginning his treatment, Alicia said Norman has been able to maintain his job and routines. And he’s still able to live on his own with his girlfriend, Grace.

“Grace and Norman have been able to stay independent because of the help that TAF has given them,” Alicia said. “We’re really blessed.”

Norman, left, with his band-mates.

Alicia said she also credits God, along with their family’s quality health insurance for helping them during a difficult year.

“I can’t imagine if we didn’t have insurance,” Alicia said. “I sit and think about it, and it gives me a panic attack.”

Because Norman’s immune system leaves him vulnerable to diseases like COVID-19, Norman must take extra precautions to stay healthy.

“It’s been pretty rough,” she said. “Norman’s job has been so good to him, though. They’ve let him come and go as he needs to.”

Thankfully, Norman’s favorite activities involve being outside. He and Grace are nature lovers and avid campers.

“That's their favorite thing to do,” Alicia said. “They love to cook on the fire.”

Thanks to the effectiveness of his treatment, Alicia said Norman has stayed positive about his condition.

“Our kid is happy—he’s peaceful,” she said.

“Our family really, really appreciates TAF.”

When he’s not camping, Norman enjoys drumming in a local heavy metal band.

“Norman’s just doing what he does,”

Alicia said. “He’s living his life.”

Norman and his mom, Alicia.

Measuring TAF’s Impact

Every year, millions of underinsured Americans cannot access the treatment they need because of an inability to pay. Since 2009, The Assistance Fund has helped more than 160,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease. In 2021 alone, we assisted nearly 60,000 people in all 50 states, Washington, DC, and Puerto Rico.

Susan, Primary Biliary Cholangitis Financial Assistance Program.

Alaska Hawaii Puerto Rico

2021 Financials

Thanks to the generosity and support of our donors, in 2021 we provided $290.3 million in financial assistance to patients living with life-threatening, chronic, and rare diseases.

Financial assistance provided: $290.3M

($290,285,128)

Total revenue and support: $296.7M

($296,734,521)

Total expenditures: $304.6M

($304,631,402)

Program services $294,374,244 Management $8,105,104 Fundraising $1,010,861

2021 in Numbers

95 % of TAF expenditures provided direct financial assistance to patients.

The average total assistance per patient was: $5,245

Patients assisted:

States where we provided assistance: 50 (TAF provides assistance to people in DC, Guam, the U.S. Virgin Islands, and Puerto Rico)

Online chats handled:

23,743

55,194 Disease programs: 74

Calls received:

296,325

Claims paid: 546,000

Team of Patient Advocates: 40 (including 4 who are bilingual)

Ways To Give

As the COVID-19 pandemic continued to impact our country, TAF’s individual contributors gave back in significant numbers. In 2021, we doubled the number of recurring contributors, and gained more than 1,100 new individual contributors. We are tremendously grateful to each one of you. TAF offers several convenient ways for you or your loved ones to give. You can specify your gift go to one of our more than 70 disease programs or give an unrestricted gift, which allows us to direct the monies toward the greatest need. Ninety-four cents of every dollar you give to TAF provides direct financial assistance to patients, and all gifts that go to The Assistance Fund are tax-deductible.

TAF CHAMPIONS PROGRAM

TAF’s Champions are our most committed donors. Through a monthly commitment, our Champions provide crucial, consistent funding so that we can continue to help thousands of people who desperately need it. Learn more at https://tafcares.org/monthly-donors/.

ONLINE

Go to www.TAFcares.org/donate to donate directly through our website. You can also donate in honor or loving memory of someone.

P HONE

To donate over the phone, please call (855) 421-4310 to speak with someone from our Philanthropy Department.

M AIL

Download, print, and complete the Giving Form from the “Other Ways to Give” page on the TAF website and mail it to: The Assistance Fund 4700 Millenia Blvd., Suite 410 Orlando, Florida 32839.

SOCIAL MEDIA

Donate to TAF through our Facebook page by clicking the “donate” button at www.Facebook.com/AssistanceFund.

PLANNED GIVING

Leave a legacy and make a lasting impact by including The Assistance Fund in your estate plans. Visit https://tafcares.myplannedgift.org/ and choose the giving option that works best for your goals.

EMPLOYER MATCHING

Double your impact. Many employers will match tax-deductible charitable contributions made by their employees, retirees, and employees’ spouses. Ask your current employer about this opportunity to support a worthy cause.

Leadership

Executive Leadership

Mark P. McGreevy, President and CEO

Steve Alsene, Chief Financial Officer

Gerald Lauria, Senior Vice President of Business Development and Strategy

Danielle Vizcaino, Senior Vice President of Operations, Philanthropy, and Communications

John D’Angelo, Vice President of Business Intelligence

Judith Fox, Vice President of Regulatory Compliance

Missy Jenkins, Vice President of External Affairs

Board of Directors

Lawrence Hatch, Chair

John Fraley, Vice Chair

Ellen Feinstein

Justin Aronson, J.D.

Julie Judge

Jeff Milford, CPA

Kristen D.W. Morris Medical Advisory Board

Robert Bermel, M.D.

Thomas Fountaine, M.D.

Brian Rini, M.D., FASCO