The Assistance Fund (TAF) 2022 Impact Report

BEYOND A DIAGNOSIS

MISSION VISION

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

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

Message From the President and CEO

From the time I began at The Assistance Fund (TAF), I’ve been humbled and honored to be a part of an organization that–at its core, is dedicated to helping people living with life-threatening, chronic, and rare diseases get the treatment they need. Even before joining the organization in 2016, it has never been lost on me just how great an impact TAF makes every single day— across an ever-increasing number of rare diseases and ultimately even more patients. I’ve have been lucky to see this impact up close while leading operations at TAF, and now, I’m incredibly honored and excited to take the helm as President and CEO.

A few years ago, I was boarding a plane and sat next to a lovely woman, Carol She and I struck up a conversation and had an instant connection. Carol told me about how much she loved playing the piano, as well as what it was like living with Parkinson’s disease. I told her about our disease program for people living with Parkinson’s disease, and a few months later she was approved for assistance. Thanks to the treatment she’s taking, she’s now able to go to her local coffee shop, play piano, and have an improved quality of life.

This year’s Impact Report’s theme is an important reminder that each person we serve is more than a patient. They’re moms, dads, siblings, friends, and community members from all across the country.

This year’s Impact Report’s theme, “Beyond a Diagnosis,” is an important reminder that each person we serve is more than a patient. They’re moms, dads, siblings, friends, and community members from all across the country. Inside, you’ll read five stories of writers, bakers, runners, and, yes, people receiving TAF assistance. I hope you’ll read their stories and be as moved and inspired by them as I am.

Last year, thanks to the tremendous generosity of our donors, we were able to help Kanwar, Julia, Tanya-Marie, John, and more than 40,000 other patients access the critical treatment they need. Through nearly 80 disease programs and $270 million in donations, TAF continued to provide underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.

With the pandemic's end, many people living on fixed incomes are struggling to pay for basic necessities, and the need for charitable assistance organizations like TAF will only grow. To address that need, we launched eight new disease programs in 2022, extending assistance to people living with diseases like ALS and asthma, as well as several rare diseases.

Our operations team launched new, innovative features like our chatbot, Violet, which has already answered nearly 8,000 online inquiries from patients, caregivers, and providers. Cutting edge AI tools like Violet can bring our patients peace of mind while our Patient Advocates deliver best-in-class customer service.

In 2022, TAF unveiled a comprehensive set of patient resources, providing important information for patients, families, caregivers, and more. And in June, members of TAF’s team traveled to New York City to interview two families for our latest TAF patient video. Susan and Grayson’s heartening stories of finding TAF and staying active in their communities reflect our laser-like focus on putting patients and their families at the heart of everything we do.

Thank you again for your support as we begin this new phase of TAF and—together—move closer to the day when no person goes without treatment because of an inability to pay.

DANIELLE VIZCAINO President and CEO

Message From the Board Chair

Since becoming Board Chair in 2017, I’ve been proud to be part of a mission-focused organization with strong core values of advocacy, excellence, innovation, passion, people, and transparency. As I reflect on my tenure, I’m in awe at how much The Assistance Fund (TAF) has grown and ac-

complished. When I started, TAF offered 35 disease programs; now, TAF offers nearly 80. To date, TAF has helped nearly 180,000 patients in all 50 states, DC, and Puerto Rico, and provided hundreds of millions of dollars in financial assistance to help people access the critical treatment they need.

With an ever-changing policy environment, there’s no doubt TAF has the team to meet this moment and deliver for the tens of thousands of people TAF serves each year.

It’s no secret the patient assistance landscape has evolved over the years. With so many patients relying on us, we have no choice but to evolve with it. While TAF will continue to offer the highest standards of operational excellence its stakeholders have come to expect, I’m excited to see the organization build on innovative new initiatives that will help transform the way TAF supports its patients. In 2022, both TAF’s Medical Advisory Board and Advocacy Committee welcomed new members, adding experience and a wide range of new, diverse perspectives. With an ever-changing policy environment, there’s no doubt TAF has the team to meet this moment and deliver for the tens of thousands of people TAF serves each year.

During a year of change, I’m proud that TAF continued to receive top marks from national charity ranking organizations like GuideStar, GreatNonprofits , Charity Navigator, and was named a top charity by both Forbes and The NonProfit Times The NonProfit Times also recognized TAF’s mission-driven work and strong work culture, naming it for the second year in a row as one of America’s 50 best nonprofits to work for. These awards would not be possible without the support of our community

of patients, providers, caregivers, and donors, whose support makes our work possible.

On behalf of TAF’s Board, I am thrilled that Danielle Vizcaino is serving as TAF’s new President and CEO. Danielle has already made enormous contributions to the organization and the patients it serves. She has proven to be an outstanding leader and tireless patient advocate, with a unique understanding of the patient assistance landscape. Most important, she is committed to TAF’s vision of seeing the day when no person goes without treatment because of an inability to pay.

I am truly grateful to each of my fellow Board members; it continues to be an honor to serve with such dedicated, talented professionals on TAF’s volunteer-based Board. I’ve never been more confident that TAF will continue to serve its mission of providing underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.

LAWRENCE HATCH Chair, Board of Directors

Kanwar, Parkinson’s Disease Copay Assistance Program

The Olympic runner Usain Bolt once said, “Stop waiting for things to happen. Go out and make them happen.” For Kanwar, that means training to run 5Ks and marathons, and competing in triathlons around Central Florida. Inspired by another young person living with Parkinson’s disease, he knew it was possible. They connected in 2018 as she was preparing to run the New York City Marathon.

“I said, ‘If she could do it, I could do it,’” Kanwar said.

Kanwar’s journey with Parkinson’s disease began in 2007. He was going in for his annual physical and mentioned pain in his leg. One specialist visit led to another, eventually bringing him to a friend who is an orthopedist. The doctor had him take 10 steps and instantly knew what was causing his pain.

“I was in denial,” Kanwar said. “I thought Parkinson's disease was just for old people.”

Kanwar trains to run 5Ks and marathons, and competes in triathalons. He was inspired by another young person living with Parkinson's disease. "I said, 'If she could do it, I could do it.

Parkinson’s disease is a progressive nervous system disorder that affects movement. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement. At age 39, Kanwar’s case was rare; according to the Mayo Clinic, Parkinson’s disease is unusual in people under 60.

“I kind of shut off the rest of the world for 10 years,” he said. “I didn't meet friends or socialize or anything.”

In 2022, Kanwar’s doctor prescribed a new treatment that would better address his symptoms. When he got to the pharmacy, he learned it would be $2,000 each month for the copay.

“I said, ‘That's ridiculous. I can't afford it,’” Kanwar said. “I didn’t have any hope.”

To get help, Kanwar applied for the disease program waitlist at The Assistance Fund (TAF). TAF’s Parkinson’s Disease

Copay Assistance Program provides financial assistance for out-of-pocket costs for prescribed FDA-approved treatment, such as copays, deductibles, and coinsurance. A few weeks after he applied, funding became available and Kanwar enrolled in the program.

“My quality of life has improved so much,” Kanwar said.

When he’s not running, Kanwar is helping people in his community. Since retiring from his leadership role with Tupperware™, he’s served on the Board of Directors for the Parkinson Association of Central Florida, where he participates in local events, raises awareness, and shares his story with others. His inspirational story was even featured on The Today Show in a segment about people living with Parkinson’s disease.

“I get calls from people from around the world now,” Kanwar said. “I can do things that I wasn't able to do before. TAF has really helped me a lot.”

I can do things that I wasn’t able to do before. TAF has helped me a lot.

The grandchildren are just like getting a cupcake with extra icing— they're that good.

Julia, Pulmonary Hypertension Copay Assistance Program

Cooking gumbo takes time, patience, and love. Its warmth can be felt in every ingredient. For Julia and her family, gumbo is the perfect Christmas dish.

“My husband is an excellent cook,” Julia said. “Each year, we cook 40 quarts of gumbo and have 80–100 people march through the house eating and visiting.”

Luckily for Julia and John, their family isn’t far away. Two of their sons and two grandchildren live nearby in Ogden, Utah, allowing for frequent family gatherings.

“The grandchildren are just like getting a cupcake with extra icing—they're that good,” she said. “Grandkids are just amazing.”

When Julia was diagnosed with pulmonary hypertension, a serious lung condition, she leaned on her strong family support system, as well as kind neighbors, to help her. She also counted on John’s background in respiratory therapy, an area he’s worked in for 50 years.

“He absolutely loves doing it,” Julia said. “John has been the light of my life.”

In May 2019, Julia’s condition worsened, leaving her hospitalized. Those three days, she said, were some of the scariest for her and John.

“He was terrified to leave me alone and worried I wouldn’t make it,” Julia said. “It was awful.”

After she left the hospital, Julia’s cardiologist prescribed her a new treatment they thought would help her condition and raise her oxygen saturation levels. When Julia saw the price, though, she was shocked.

“They said the copay was $4,000 a month,” she said. “There was no way we could do that.”

Julia’s doctors referred her to The Assistance Fund’s Pulmonary Hypertension Copay Assistance Program. The program provides eligible individuals with financial assistance for out-of-pocket costs for

all prescribed FDA-approved treatment for PH, such as copays, deductibles, and coinsurance.

“TAF’s been a giant, giant gift,” Julia said.

In September 2019, Julia began her new treatment regimen. The impact, she said, was immediate.

“I've noticed an incredible difference with the treatment,” she said. “I would have never thought I'd be where I am now.”

Each December, Julia puts up a real Christmas tree in her home. For a few years, her health kept her from putting the tree up herself. But in 2022, Julia

decorated the tree with more than 50-years-worth of ornaments all by herself.

“To me, that's a huge milestone,” Julia said. “I'm a maniac about my Christmas tree. This treatment is a gift.”

Julia is also planning more trips and vacations to see her family. Whether it be to Park City, Utah, or Portland, Oregon, Julia said she’s determined to travel and live a fulfilling life.

“TAF is the reason that I'm in the spot that I'm in today,” Julia said. “I’m still going forward, still improving, still doing what I really want to do.”

TAF is the reason that I’m in the spot that I’m in today. I’m still going forward, still improving, still doing what I really want to do.

John, Idiopathic Pulmonary Fibrosis Copay Assistance Program

John’s sense of adventure has taken him many places in his life. After spending two years in the U.S. Army, he moved to Brazil with his girlfriend, Susan, where she’d taken a job as a science teacher. A few years later, they were married. Though they enjoyed the tropics, John said he was thrilled when he learned a close friend of Susan’s had moved to a similar climate: Florida.

“There's a certain amount of serendipity that runs through most people's lives,” John said. “I think that was ours.”

Since 1984, John and Susan have called Central Florida home. A quintessential outdoorsman, John has kept a blog for 12 years showcasing his reflections and photographs from his time on the trails enjoying nature.

“I live about 18 miles from a stand of cypress trees. I want to go find them,” he said. “The Florida Trail goes through my neighborhood, and I hike it all the time.”

After initially visiting his doctor for a persistent cough with no known cause, John received an MRI that showed his lungs were damaged. His pulmonologist im -

mediately knew it was idiopathic pulmonary fibrosis. The chronic condition can cause permanent lung scarring, making it difficult to breathe. Doctors immediately started him on a course of treatment.

“My condition was getting worse,” John said.

For a few months, John was able to access his treatment through a free clinical trial. Once that ended, John was on his own to afford the high cost of treatment.

“The treatment has probably slowed my disease down quite a bit,” he said.

To help afford the treatment, his pulmonologist referred him to The Assistance Fund’s (TAF’s) Idiopathic Pulmonary Fibrosis Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for all FDA-approved treatment for the disease named in the program, such as copays, deductibles, and coinsurance.

“TAF picks up that $500 every month,” John said. “It’s a lot of money for people like me.”

Over the past two years, John and his wife have traveled the country, spending months on the road. In their converted van, they’ve spanned the country using back roads from Florida to California.

“We drove 8,000 miles to get home,” he said. “I wrote, photographed, and blogged that entire trip.”

The trip also gave John a chance to be outdoors and do what he loves: fishing, hiking, and capturing it in his blog.

“I just continue the blog as a public service,” John said. “I’ve sent it to 1,100 people, some of whom I’ve never met before!”

John said he’s never looked at the blog as a money generator. Instead, it’s his way of sharing his passions with the world.

“If you measure wealth only by money, I'm a failure,” he said. “But if you mea -

I just continue the blog as a public service. I’ve sent it to 1,100 people, some of whom I’ve never met before!

Over the past few years, John and Susan have traveled the country, spending months on the road, including a stop in Yosemite National Park in California.

sure wealth by having pages appear when you Google my name, I’m a huge success!”

Follow John’s blog at: https://www.spottedtail.com/blog/

John and his wife, Susan, visiting Arches National Park in Utah.

Tanya-Marie, Multiple Sclerosis Copay Assistance Program

The literary hero Atticus Finch said, “You never really understand a person until you consider things from his point of view.” When Tanya-Marie isn’t working as a claims adjuster for a car insurance company, she loves visiting the library and reading—"To Kill A Mockingbird” is her favorite book. The work supports her as well as her two grown children.

“My son is a red-shirt junior at Nicholls State,” Tanya-Marie said. “I love getting to watch him on ESPN playing basketball.”

More than 20 years ago, Tanya-Marie began a medical journey faced by too many people. After a series of unexplained falls, Tanya-Marie went from doctor to doctor—

You have to advocate for yourself. My mom was adamant about that.

over a dozen—looking for answers. TanyaMarie and her mother knew something was wrong, but her doctors didn’t believe her.

“One doctor told me it was in my head, that I was making it up,” she said. “She wanted to put me in a hold at a psychological ward.”

One moment Tanya-Marie would be fine, the next she would fall; she was tired, and her hands went numb. Tanya-Marie’s supportive mother never stopped believing she was truly sick.

“You have to advocate for yourself,” TanyaMarie said. “My mom was adamant about that.”

It wasn’t until she saw a cardiologist and wore a heart monitor that TanyaMarie discovered the cause of her symptoms. Her cardiologist ordered an MRI that showed Tanya-Marie was living with multiple sclerosis (MS). In people living with MS, the immune system attacks the protective sheath that covers nerve fibers and causes communication problems between the brain and the rest of the body. For decades, Tanya-Marie’s employerbased insurer covered her MS treatment. When her insurance no longer covered the treatment, Tanya-Marie’s doctor suggested she apply to The Assistance Fund’s (TAF’s) Multiple Sclerosis Copay Assistance Program.

Tanya-Marie "Umi" and her granddaughter, "Milky." To help explain MS, Tanya-Marie started a children's book series.

“I didn’t think I’d be approved, but TAF made it so easy,” Tanya-Marie said. “The treatment is like a vitamin for my spinal cord.”

In early 2020, Tanya-Marie underwent a stem cell transplant. After a subsequent fall, she began a four-month stint in physical therapy. When Tanya-Marie ’s granddaughter kept asking about why she had been away and when she was coming home, Tanya-Marie was at a loss for words.

“I can’t explain MS to a four-year-old,” she said.

The incident inspired Tanya-Marie to put her passion for reading into writing her first children’s book, “MS Is Not Meatballs and Spaghetti.” The story, featuring Milky and Umi, shows how people living with MS continue to live productive lives.

“Other books made it too complicated, so I made one myself,” Tanya-Marie said. “It’s just a simple book so little kids can understand.”

Now Tanya-Marie is working on a sequel and animated series for Milky and Umi. With TAF assistance, Tanya-Marie is reading, writing, and focusing on her family.

“TAF has made it very easy,” she said with a smile.

To read or purchase Tanya-Marie's book, email Tanya-Marie at: MilkyandUmi@gmail.com

INDIVIDUAL CONTRIBUTOR FEATURE

Ted and Judy's Story, Epilepsy Copay Assistance Program

A true artist, Judy, seen here with her grandkids, took up poetry and painting after she retired.

“She was a great lady,” Ted said.

Each year, The Assistance Fund (TAF) helps tens of thousands of people access the treatment they need to manage a life-threatening, chronic, or rare disease. The need is great, and despite helping more than 40,000 people in 2022, there are many more people who need help affording the care they need.

For Ted, one of our top individual contributors in 2022, giving to TAF meant helping someone like his mom.

“I took some of my inheritance and gave it back to TAF because I knew, through my mom, it was very beneficial,” Ted said. “People really need the help to pay for treatment.”

Judy and her daughter, Dawn.

Ted and his wife, Donna.

Ted’s mom, Judy, taught English and then served as a guidance counselor in Omaha high schools for decades. Judy was passionate about travel, and she

loved taking trips to Europe and South America. A true artist, Judy wrote poetry, was published in magazines, and picked up the paintbrush after she retired.

“She taught herself how to paint,” Ted said. “After she retired, she did ceramics and pottery, too.”

One day, Judy was driving when she suddenly crashed her car into a small tree. Emergency services arrived but Judy resisted their help, convinced she was fine. It wasn’t until she had a second seizure in front of the doctors and her daughter, Dawn, that she agreed to get medical help. She was diagnosed with epilepsy right away.

“My mom was a super independent person,” he said. “Epilepsy really crushed her and changed her whole life.”

Thankfully, Judy’s daughter, Dawn, was familiar with financial assistance from her work as an oncology nurse case manager at the University of Nebraska Medical Center. Ted said she relied on his sister to care for her. Though she wasn’t able to drive, Judy continued to write, draw, and paint.

“Those were tough years, but the main credit goes to my sister,” he said. “She’s very good at what she does.”

Dawn encouraged her mom to apply for The Assistance Fund’s Epilepsy Copay As-

sistance Program. The program provides financial assistance for out-of-pocket costs for all FDA-approved treatment for the disease named in the program, such as copays, deductibles, and coinsurance.

“Even after Medicare, her treatment was very expensive,” Ted said.

For more than two years, Judy received financial assistance from TAF. When Judy passed away in October 2021, people came out of the woodwork to share how Judy had touched their life.

“I never had that day-to-day classroom experience with my mom and her students,” he said. “Some of these people are 45 or 50 years old, so to know my mom had that effect on them is pretty phenomenal.”

Though Ted misses his mother, he said he wants to make sure other families can get the treatment they need. His generous donation ensures her memory lives on.

“It was amazing, whether people showed up at the funeral or sent me notes, how big an influence she had on their lives,” Ted said. “She was a great lady.”

It was amazing, whether people showed up at the funeral or sent me notes, how big an influence she had on their lives.

MEASURING TAF ’s IMPACT

More Than a Number

Since 2009, The Assistance Fund has helped nearly 180,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease. In 2022 alone, we assisted more than 40,000 people in all 50 states, Washington, DC, and Puerto Rico. While the numbers are impressive, each represents a person and family with a unique story. We're honored to help so many people like Chelsea and Dennis, as featured on the opposite page.

Chelsea, Neuromyelitis Optica Spectrum Disorder

Financial Assistance Program, with her husband, Michael, and daughter, Emma Grace. Chelsea manages her symptoms through her sleep schedule and centering her diet on fresh fruits, vegetables, and gluten-free foods.

0 -499 Patients Assisted

5 00-999 Patients Assisted

1 ,000-1,999 Patients Assisted

2 ,000-5,100 Patients Assisted

Financial Assistance Program. Dennis and Faye, seen here, enjoy traveling, recently returning from a cruise to Nova Scotia, Canada.

U.S. Virgin Islands

Dennis, Neurotrophic Keratitis

2022 FINANCIALS

Thanks to our generous donors, in 2022 TAF provided $253 million in financial assistance to patients living with life-threatening, chronic, and rare diseases.

Management ($8,068,207)

Financial assistance provided: $253M ($253,312,752)

Program services ($258,661,396)

Fundraising ($1,147,231) Advocacy ($1,289,132)

Total revenue and support: $285M ($285,130,157)

Total net assets: $379M ($379,355,738)

Total expenditures: $269M ($269,165,966)

2022 IN NUMBERS

• 94 % of TAF expenditures provide direct financial assistance to patients

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

• Nearly 350,000 calls received

• T he average total assistance per patient was $ 6,229

• 19,863 online chats handled

• More than 400,000 claims paid

• 40,806 patients assisted

• Average number of claims submitted per patient: 9

• Team of Patient Advocates: 46 (including 7 who are bilingual)

Ways To Give

As our country faced another dramatic year—the end of the pandemic, rising inflation, and significant policy changes to the world of charitable patient assistance—our donors remained steadfast in supporting TAF's important work for our most vulnerable patients.

TAF offers several convenient ways for you or your loved ones to give. You can specify your gift go to one of our nearly 80 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.

PHONE

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

MAIL

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 8427 Southpark Circle, Suite 100, Orlando, FL 32819.

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

Many employers offer a matching gift program and often match gifts from full- and part-time employees, retirees, and spouses. TAF’s employer matching gift program provides an easy way to increase the impact of your donation. Visit https://tafcares.org/donors/employermatching/ to learn more.

Darlene, Idiopathic Pulmonary Fibrosis Copay Assistance Program

Leadership

Executive Leadership

Danielle Vizcaino, President and CEO

Steve Alsene, Chief Financial Officer

Gerald Lauria, Chief Development Officer

John D’Angelo, Senior Vice President of Business Intelligence

Missy Jenkins, Vice President of External Affairs

Board of Directors

Lawrence Hatch, Chair

Ellen Feinstein, RD, MHA, FACHE

Justin Aronson, J.D.

Julie Judge

Kristen D.W. Morris

Jeff Milford, CPA Medical Advisory Board

Robert Bermel, M.D.

Thomas Fountaine, M.D.

Brian Rini, M.D., FASCO

Madelaine Feldman, M.D., FACR

Andrew Campbell, M.D.

Advocacy Committee

Kristen D.W. Morris

Mark Atalla, Pharm.D., MBA

Srulik Dvorsky, GMBA

Ellen Feinstein, RD, MHA, FACHE

Ann Jackson, DPT, MPH

Eboné M. Lockett, M.S.

Joe Murray, J.D.

Christina Pearson

Sohail Rana, M.D., D.Hum

Thayer Roberts

Tia Goss Sawhney, Dr.P.H., FSA, MAAA

Chris, Prostate Cancer Copay Assistance Program