Summer 2022 Newsletter - The Assistance Fund

President's Message

Hello Friends,

I hope you're staying healthy and cool this summer. At The Assistance Fund (TAF), we remain hard at work providing financial assistance to thousands of people living with life-threatening, chronic, and rare diseases.

This month, the TAF team gathered for our third annual Values Day Event, and one of our core values is people. Putting you—the patients we serve—at the heart of what we do is central to our mission. I'm pleased to share the following updates.

Your resilience in the face of hardship is the theme of our 2021 Impact Report. In May 2021, we asked you to share your artwork with us in our inaugural Kaleidoscope of Life Art Contest. The response was incredible! Our report features the stories of the winners along with the story of our top individual contributor. I'm incredibly grateful to our generous donors who enabled us to help nearly 60,000 patients last year.

In June, members of our team traveled to New York and New Jersey to meet with two patients and their families and to film a new video featuring their stories. After two years of isolating and social distancing, it was so rewarding to see the impact of TAF assistance up close and in person. I am so inspired by Susan's and Stephanie's stories; I hope you will be, too.

Finally, on the operations front, I'm excited to announce the launch of a new Chatbot feature on our website. Now, many of your questions, including your reimbursement claims and enrollment statuses, can be answered 24 hours a day, seven days a week. We are committed to providing industry-leading technology to help you get the treatment you need.

Please enjoy the rest of our updates below. And as fall comes around the corner, stay tuned to our website and social media channels for important announcements about TAF's Reenrollment process.

Sincerely,

Mark McGreevy

President and CEO

Operations Team Tips: Meet Violet, Our New Chatbot

This July, our team launched a new feature on our website to help you to get answers to your most common questions. Violet, our new chatbot, is available 24 hours a day, seven days a week at TAFCares.org. You can check on the status of your reimbursement claims' or waitlist status, and learn about our disease programs. And if you apply for Reenrollment this fall, you'll be able to have those questions answered, too. You can continue to chat with a Patient Advocate through the chatbot during regular business hours.

At TAF, we're committed to innovating and developing pioneering solutions to ensure we provide you with the highest quality service.

Jan Wigington, Director of Operations

TAF's 2021 Impact Report: Resilience and Hope

As we entered the second year of the COVID-19 pandemic, so many of you displayed incredible hope and resiliency, which is the theme of our 2021 Impact Report. The report features the stories of the winners of our 2021 Kaleidoscope of Life Art Contest. Last year, we provided more than $290 million in financial assistance and helped nearly 60,000 children and adults access the critical treatment they need to manage a life-threatening, chronic, or rare disease. We are incredibly thankful to our donors, who make our work possible.

Read the Report

Meet Susan and Baby Grayson, Two TAF Patients

In 2019, we introduced you to Carol, a patient in TAF's Parkinson's Disease Copay Assistance Program. This summer, members of the TAF team traveled to New York and New Jersey to meet two other patients: Susan and baby Grayson. In her spare time, Susan loves reading and playing pickleball. And Grayson is a child who loves bubbles and playing with his sister, Penelope. Their inspirational stories are just two of the many lives that have been impacted by TAF's financial assistance.

If you'd like to be featured in an upcoming patient story or video, let us know. Visit https://tafcares.org/about-us/contact/ and share your story.

Watch the Video Featuring Their Stories

Upcoming Disease Awareness Months

August:

Psoriasis Awareness Month

World Lung Cancer Day - August 1

September:

Blood Cancer Awareness Month

Duchenne Action Month

Immune Thrombocytopenic Purpura Awareness Month

Leukemia and Lymphoma Awareness Month

Ovarian Cancer Awareness Month

Primary Biliary Cholangitis (PBC) Awareness Month

Prostate Cancer Awareness Month

Pulmonary Fibrosis Awareness Month

World Duchenne Awareness Day - September 7

International PBC Day - September 11

Myositis Awareness Day - September 21

aHUS Awareness Day - September 24

Sport Purple for Platelets Day - September 30

October:

Breast Cancer Awareness Month

Gaucher Disease Awareness Month

Hypophosphatasia Awareness Week (October 24–28)

World Psoriasis Day - October 29

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TAF staff wearing black for Melanoma Awareness Month.

On the Road

Conference Attendance

In 2022, TAF will attend a wide range of conferences. Here's where we're headed next:

Healthcare Advocate Summit, New Orleans, LA (September 7–9)
Global Genes 2022 Rare Patient Advocacy Summit, San Diego, CA (September 12–14)
BIO Patient and Health Advocacy Summit, Washington, DC (October 27–28)

Jan Wigington and Alexcia Williams from our Operations Department at the 2022 Soft Bones National Patient Meeting in Orlando, FL.

Congress Passes Important Medicare Reforms

Earlier this month, congressional leaders voted to limit the total amount seniors pay out of pocket for their Medicare Part D prescriptions to no more than $2,000. No one should have to forgo or delay critical treatment because of costs. Now, fewer seniors will be forced to leave a prescription at the pharmacy counter or delay treatment. Medicare beneficiaries will start to benefit from these changes at the start of 2024.

Thank you to our nearly 2,000 TAF advocates who, since last October, sent more than 6,300 messages to Congress advocating for this out-of-pocket cap and patient protections to strengthen Medicare Part D.

Advanced Research Projects Agency for Health Updates

TAF's Advocacy Department is working hard to ensure the unique needs of rare disease patients and their families are considered as Congress creates, funds, and implements the Advanced Research Projects Agency for Health (ARPA-H).

In May, Dr. Adam Russell was named as ARPA-H's Acting Deputy Director. The TAF Advocacy Department met with Dr. Russell and other ARPA-H leaders prior to his appointment to discuss how the agency can best support people living with rare diseases.

In June, our Advocacy Action Center sent a campaign encouraging advocates to contact their members of Congress to support ARPA-H. TAF advocates sent more than 600 letters to the House of Representatives.

Days later, the House of Representatives passed H.R. 5585 with bipartisan support to formally establish the agency. The House Appropriations Committee also voted to increase agency funding from $1 billion to $2.75 billion next year.

Raising awareness and advocating for public policies that ensure access to care is critical to our mission. Visit our Advocacy Action Center to learn more about how you can make your voice heard.

Lend Your Voice

We're Growing!

So far, TAF has added seven new disease programs in 2022, bringing our total to 79. In June, we opened our latest financial assistance program for people living with chronic inflammatory demyelinating polyneuropathy.

Click Here To View a Full Listing of TAF's Programs

Purple Pro: Brandy Prince, Quality Assurance Specialist

What is your favorite part about your job?

I love connecting with people and contributing to the excellent customer service TAF provides to patients.

What have you learned while working at TAF?

I’ve learned how to actively listen to someone else's needs, apply feedback, and express empathy.

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

The three words that best describe how to be successful at my job are accuracy, efficiency, and attentiveness.

How are you trying to improve patients’ experience?

I’m trying to improve patients' experience by providing constructive feedback and coaching to our Patient Advocates and Contact Center team.

Describe what it’s like to work at TAF.

Working at TAF is humbling. As a team member, I have a role in supporting patients who have a financial need to live a full, active, healthy lifestyle. The impact of helping someone in need is very gratifying and rewarding.

What is one fun fact about you?

I absolutely love ladybugs.

Which TAF value do you most identify with and why?

Passion. My passion for people and success aligns with TAF and my personal goals. I believe when you're passionate about your purpose, TAF's other five values come naturally.

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.

Patient Profile: Dennis, Neurotrophic Keratitis Financial Assistance Program

For nearly 50 years, Dennis and his first wife lived in Richmond, Virginia, raising their three children. When she passed away in 2016, Dennis struggled with the loss. Dennis said his strong faith and great network kept him going.

“I have a lot of good friends,” Dennis said.

Dennis met his fiancée, Faye, two years later.

“We hit it off,” he said. “She’s become a true friend.”

When Dennis’ routine eye exam raised red flags, he relied on Faye, as well as his friends and family. Dennis’ optometrist suspected it was shingles, but Faye suggested he seek a second opinion.

“She kept me positive and pointed me in the right direction,” he said.

Dennis found an ophthalmologist who diagnosed him with a rare eye disease called neurotrophic keratitis, a disease of the cornea.

“I was distraught,” Dennis said. “I worried I would lose my eyesight.”

Dr. Shepherd, his ophthalmologist, was well-versed in neurotrophic keratitis and recommended Dennis begin treatment to save his eyesight.

“The copay was $4,000 for an eight-week treatment, and I had to do it four times,” he said. “I was at a loss for words. It was too much for me to pay.”

He went online and applied for The Assistance Fund’s Neurotrophic Keratitis Financial Assistance Program. The program provides financial assistance for all FDA-approved treatment for the disease, including prescription drug copayments, health insurance premiums, and incidental medical expenses.

“I spoke with a TAF Patient Advocate who kept me so positive and informed,” Dennis said. “She really took time and walked me through the process.”

Within minutes, Dennis was approved for a year of assistance.

“I was so relieved,” he said. “That meant I could go ahead and get my eye fixed.”

In July 2021, Dennis and Faye moved to Newport News to start fresh. After so many years in Richmond, Dennis wanted to downsize and support Faye’s work as a local artist.

“Her art is incredible,” he said. “We have fun together playing cards and going on small trips.”

Recently, the couple returned from a northern cruise where they explored Nova Scotia. With his life ‘near-normal,’ Dennis says he’s eager for the next chapter.

“It’s just nice to have a purpose,” Dennis said. “Exciting, happy things are still happening.”

Would you like to be featured in an upcoming newsletter? If you have received assistance from TAF and are willing to share your story, please contact Gracie Awalt, Communications Associate, at Gracie.Awalt@tafcares.org.

Charity Navigator Gives The Assistance Fund Top Marks

This spring, The Assistance Fund received a perfect score on Charity Navigator’s Encompass Rating System. Charity Navigator is one of the largest and most well-respected independent nonprofit evaluators in the country. We’re proud that 94% of our expenditures provide direct financial assistance to patients.

Paying It Forward

Help change lives with 83 cents a day.

As part of the TAF patient community, we know you understand the value of our work. As a 501(c)(3) charitable organization, we rely solely on the generosity of donors to make our programs possible.

And you are the best ambassador for our programs. Do you know someone who might be interested in donating to TAF? Become a TAF fundraising volunteer today by simply forwarding this communication with a request that they consider donating to TAF. Feel free to include your personal story of how TAF has made a difference in your life.

If you have a knack for raising money for charitable causes, our Philanthropy Department would love to hear from you! Email us at tafgiving@tafcares.org to get more involved in our fundraising initiatives.

Gifts of any amount make a life-changing difference to someone diagnosed with a life-threatening, chronic, or rare disease. Thanks for sharing our message and helping us expand our programs to those in need.

Donate Today

Healthy Recipe: Corn Salad With Tomatoes, Basil, and Cilantro

Makes: Four to six servings

Time: 15 minutes

INGREDIENTS

5 ears of corn
1 pint of cherry or grape tomatoes, halved
1 lime
3 tablespoons extra-virgin olive oil
Salt
¼ teaspoon minced seeded fresh habanero or other very hot chile (optional)
½ cup fresh basil leaves
¼ cup fresh cilantro leaves

PREPARATION

Microwave the corn in their husks on high for three minutes. Shuck the corn—the silks will come off easily. (If you want to boil or steam the corn on the stovetop, you can shuck the corn first then cook just until brighter in color, 2–3 minutes.) Cut the kernels off the cobs, transfer them to a large bowl, and add the tomatoes.
Finely grate the zest of the lime directly over the corn mixture, then squeeze the juice from the lime all over. Add the oil, a generous pinch of salt, and the chile, if using. Mix well, then tear the herbs over the salad and gently fold them in. Season to taste with salt and serve, or refrigerate in an airtight container for up to one day.

(Source: The New York Times)