TAF Spring/Summer Provider Newsletter 2021

President's Message

Hello Friends,

I hope you are well and enjoying your summer. As The Assistance Fund's (TAF's) physical offices slowly return to normal, the TAF team continues to pursue its mission of providing underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy. To that end, I'm pleased to share some exciting updates with you.

As part of our continued commitment to ensuring patients have access to critical treatment, I am proud to announce that we've renewed our COVID-19 Health Insurance Assistance Program for 2021. The program provides immediate financial support for eligible TAF patients by offering grants of up to $2,500 to help them secure health insurance. TAF patients can apply today at https://tafcares.org/covidprogram/.

In May, we asked our patients to submit their artwork in our inaugural Kaleidoscope of Life Art Contest. And the response was incredible! We received an overwhelming number of beautiful submissions; the TAF patient community clearly has many talented artists. I hope you enjoy the pieces as much as I have. You can view them below.

Thanks to the wonder of the vaccines, life as we know it is on the horizon. The TAF team looks forward to the day when we can see you in person at conferences again. Until then, I wish everyone good health. Please enjoy the rest of our news and updates below, and be on the lookout for our 2020 Impact Report, which will be published later this summer.

Mark McGreevy

President and CEO

COVID-19 Update

At TAF, the health of the patients we serve and of our employees remains our number one priority. TAF programs and services continue to be fully operational.

As of June 14, more than 142 million Americans have been fully vaccinated with a COVID-19 vaccine. The Assistance Fund team deeply appreciates the tremendous sacrifice you and your colleagues have made to keep all of us—especially the patients we serve—safe.

TAF Launches Advocacy Website

This spring, TAF launched our Advocacy website. One of our core values is to fiercely advocate on behalf of our patients to ensure they don't go without treatment because of an inability to pay. Alongside our incredible partners, we advocate to ensure patients 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.

Check it out today: https://tafcares.org/advocacy/.

Purple Pro: Shakari Kellam, Patient Advocate

What is your favorite thing about your job?

Being able to help. Patients often call in and don’t have a lot of hope. When patients see how easy the application process is and that there is no cap on assistance, they sound so relieved!

What are some of the most common questions you receive?

Most questions are about whether we have a maximum or cap on their assistance.

What have you learned while working at TAF?

Everyone is going through something. To be able to provide the assistance, even though the assistance isn’t coming from me, I’m doing something to lift weight off their shoulders. A lot of people are sleeping better knowing they will get their medication the next day.

What three things best describe how to be successful at your job?

Focus, listen, and take my time.

How are you trying to improve patients’ experience?

I am trying to provide all of the resources in one call. If a patient isn’t sure about how to navigate the website, I will take information from the website and send it over email just so they have it.

Describe what it’s like to work at TAF.

It’s refreshing and a cheerful environment. Everyone is willing to help.

What is one fun fact about you?

I am kind of shy, but once I get talking, I don’t stop!

Which TAF value do you most identify with and why?

Transparency. I like to help and put myself in another person’s shoes. Sometimes it takes a little more time, but I want to be sure I give them the correct information.

Conference Attendance

On the Road

The Assistance Fund will continue to attend virtual conferences until in-person gatherings begin again.

Winners Announced for 2021 Kaleidoscope of Life Art Contest

This spring, TAF launched its first patient art contest with the goal of providing patients an opportunity to showcase their artistic talents. The Kaleidoscope of Life Art Contest was a huge success, and we received an overwhelming number of exquisite submissions from our patients. Enjoy the five winning pieces:

Marieke K., Parkinson's Disease Copay Assistance Program

Faith J., Pulmonary Hypertension Copay Assistance Program

Alicia V., Primary Biliary Cholangitis Financial Assistance Program

Phyllis P., Cystic Fibrosis Copay Assistance Program

Kenya M., Pulmonary Hypertension Copay Assistance Program

Read Patients' Stories on Our New Medium Page

We love hearing from our patients. Their lives, and their stories, are why we come to work every day.

"Because of TAF, I can continue living in my home without worrying about how I will pay the mortgage." – Ben, Lambert-Eaton Myasthenic Syndrome Financial Assistance Program

"TAF’s processes could not have been easier. They believed me, always. It has brought me to tears. Because of TAF, the financial burden is lifted, and I can take better care of myself." – Joanne, Fabry Disease Financial Assistance Program

"It’s not just providing treatment to people for comfort, it’s quality of life and longevity of life. I feel like I’ve hit the lottery." – Mary, Hereditary Angioedema Financial Assistance Program

Now, you can read their stories on our new Medium page: https://theassistancefund.medium.com/. Follow The Assistance Fund today!

Meet Susi, Primary Biliary Cholangitis Financial Assistance Program

Susi didn’t always have the travel bug. She moved to Boston from Connecticut in the 1970s as an art student. Forty years later, Beantown is still home. Until the COVID-19 pandemic, Susi worked for the American Council for International Studies, an educational travel agency. It fulfilled her passion of working with people and brought the world to her doorstep.

“Through work, I’ve been to Australia, the United Kingdom, and Chile,” Susi said. “And I did a global teacher conference in Costa Rica. That was so much fun!”

In 2020, with bags packed and sights set, Susi eagerly awaited her next trip: an Italian adventure. Although the pandemic delayed the trip, Italy remains at the top of her destination wish-list.

“It was going to be my first trip to Italy,” she said. “Unfortunately, 2020 was such a crazy year.”

On top of the world-class travel, Susi’s job also provided her with excellent health benefits. It wasn’t until she lost her job in March 2020 that Susi realized how expensive her primary biliary cholangitis (PBC) medications were.

“I took for granted my monthly $30 copay,” Susi said. “Without my job, I didn’t know what to do.”

When Susi’s liver numbers spiked several years ago and was diagnosed with PBC, she was referred to a liver specialist at Beth Israel Deaconess Hospital. Thanks to her specialist’s quick thinking and effective treatment, she remains symptom-free. But without her employer-based coverage, Susi faced the horrifying prospect of going without treatment.

“I don’t know what would happen if I didn’t take my treatment,” she said. “When you’re on your own facing it, it’s difficult.”

Susi’s doctor made sure she knew she was not alone. Since her diagnosis, Dr. Lai has looked out for Susi, answering her questions and providing critical support. When Susi’s copay skyrocketed nearly tenfold, she knew where to turn.

“I’m so grateful that my doctor always goes above and beyond to keep myself and others living their healthiest lives to the fullest,” Susi said. “She’s my hero.”

Dr. Lai suggested Susi contact The Assistance Fund (TAF). Through its Primary Biliary Cholangitis Financial Assistance Program, patients like Susi have financial assistance for many of their out-of-pocket expenses for PBC, including copays, deductibles, premiums, and ground travel costs. When Susi learned TAF had approved her participation in the program, she felt an incredible sense of relief.

“It just took a load of pressure off of my shoulders,” she said. “If it weren’t for TAF, I would have had to stop taking my medication.”

For her 60th birthday, Susi finished an 80-mile bike ride in Vermont, cycling alongside women half her age. Looking ahead, Susi has a booked full schedule of cycling and camping until the pandemic subsides and she can travel abroad again.

“Thanks to TAF, I can continue following my passion,” Susi said. “I’m able to keep photographing my cycling travel adventures as well as the people I meet along the way!”

Upcoming Disease Awareness Months

June

Acute myeloid leukemia

Myasthenia gravis

July

Graves’ disease (thyroid eye disease)

Juvenile arthritis

Parathyroid diseases

August

Psoriasis

TAF Is on Instagram

If you're on Instagram, follow @TheAssistanceFund for the latest news and updates, as well as a look at the people behind our best-in-class patient experience.

Christina's Corner

Thank you to all who responded to the Provider Portal survey earlier this year. The information was extremely helpful. We heard your feedback, and will be implementing several improvements over the coming months. Stay tuned!

We strive to ensure the Provider Portal is user-friendly and your one-stop shop for accessing information about your patients, viewing TAF’s full list of disease programs and accompanying FDA-approved treatments, and sending questions to our helpful TAF team. The Provider Portal also makes the Claim Override process worry-free. Just put in a new case and select "Claim Override." If you have questions or concerns, please don't hesitate to reach out to me. Write to me at Christina.Abbene@tafcares.org.

And a quick reminder: TAF offices will be closed July 5 for the Independence Day holiday and September 6 for Labor Day. I hope you have a great summer. I look forward to reconnecting with many familiar faces soon.

Christina Abbene, Program Manager