Spring 2022 Newsletter - The Assistance Fund

President's Message

Hello Friends,

I hope you're having a happy and healthy spring. Great things are happening at The Assistance Fund (TAF), and I'm pleased to share a few updates with you.

TAF continues to grow. Since January, we've opened six new disease programs for people living with ALS, asthma, cold agglutinin disease, ovarian cancer, pancreatic cancer, and thyroid cancer, bringing our total number to 78. Through our disease programs, we've assisted more than 160,000 children and adults access the care they need.

As we settle into our new "normal," we're once again attending in-person conferences across the country. In April, Stephanie Marshall, Director of Patient Advocacy, attended the Fabry Support and Information Group Expert Family Conference. And later this summer we're headed to the Soft Bones National Patient Meeting and the National MPS Society Annual Family and Scientific Conference, among many others. It's wonderful to reconnect with our friends, partners, and most importantly you—the patients we serve.

I know how critical our reimbursement process is for you. At TAF, we strive to offer a user-friendly system for receiving and processing reimbursements. Be sure to check out our tips below for quickly receiving your reimbursements. And if you have ideas on how we can improve, please be sure to let our Patient Advocates know. We'd love to hear from you!

Read on and enjoy the rest of our news and updates, including our latest patient story. At TAF, we're committed to keeping you at the heart of everything we do.

Sincerely,

Mark McGreevy

President and CEO

Operations Team Tips: Want Faster Reimbursements?

The fastest way to get your reimbursements is to submit your claims immediately after receiving the service. When you submit your reimbursement claims right after the date of service, you will receive your reimbursement within five to seven business days.

Many patients wait until the beginning of the next year to submit their required documentation for reimbursement. This year, thousands of people submitted all their calendar-year 2021 documentation for reimbursement in January, February, and March 2022, which caused delays in processing time. We encourage you to submit your claims promptly to receive your reimbursements as quickly as possible.

Thank you for your patience and we look forward to assisting you.

Jan Wigington, Director of Operations

TAF Offices Closed for Memorial Day

TAF offices will close beginning at 3:30 p.m. ET on Friday, May 27, for the Memorial Day holiday. We will resume normal business hours on Tuesday, May 31, 2022.

Never Pay To Apply for TAF Assistance

Are you or someone you know applying to an independent charitable patient assistance organization for help with out-of-pocket costs for medical treatment? You should NEVER have to pay a fee to apply. Reputable independent charitable patient assistance programs do not charge fees to patients. For a list of these organizations and other resources, visit TAF’s Patient Resources page on our website, or call one of our Patient Advocates at (855) 845-3663.

Measuring Our Impact

This month, TAF unveiled a new, interactive 50-state map showcasing the impact we've had across the country. The map includes data on the number of patients assisted, individual donors, our Medicare population, as well as how many disease programs are utilized in each state. See the impact we had in your state last year: https://tafcares.org/about-us/our-impact/.

TAF Hires New Vice President of External Affairs

In February, TAF hired health policy expert Missy Jenkins as its new Vice President of External Affairs. Previously, Missy served as the top health advisor to former Speaker of the House Newt Gingrich and acted in lead lobbying positions at the U.S. Chamber of Commerce, PhRMA, and PCMA.

“I’m thrilled to join an organization with such a strong patient-centric mission," Missy said. "Alongside our partners, we will work tirelessly to raise awareness of the barriers patients face in accessing critical treatment.”

To learn more about TAF's advocacy efforts and how you can lend your voice in Washington, DC, follow our new Twitter account (@TAFAdvocacy) or visit our Advocacy Action Center.

Upcoming Disease Awareness Months

May:

Asthma

Bladder cancer

Cystic fibrosis

Healthy Vision Awareness

Hepatitis

Lupus

Melanoma

Mental Health Awareness

Myositis

Spondyloarthritis

Women's Health Week

Cystinosis Awareness Day - May 7

MPS/ML Awareness Day - May 15

World HAE Day - May 16

National Hepatitis Testing Day - May 19

Gout Awareness Day - May 22

June:

Acute myeloid leukemia

Myasthenia gravis

Men's Health Week

World Kidney Cancer Day - June 16

July:

Graves' disease

Juvenile arthritis

Parathyroid diseases

World Hepatitis Day - July 28

August:

Psoriasis

World Lung Cancer Day - August 1

TAF staff wearing orange for Multiple Sclerosis Awareness Month.

On the Road

Conference Attendance

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

Parent Project Muscular Dystrophy 2022 Annual Conference, Scottsdale, AZ (June 23–26)
Patient Assistance & Access Programs Conference, Parsippany, NJ (June 28–30)
Soft Bones National Patient Meeting, Orlando, FL (July 8–9)
World Orphan Drug Congress, Boston, MA (July 11–13)
National MPS Society Annual Family and Scientific Conference, Nashville, TN (August 4–6)
Healthcare Advocate Summit, New Orleans, LA (September 7–9)
Global Genes Rare Patient Advocacy Summit, San Diego, CA (September 12–15)
National Fabry Disease Foundation Family Conference, Greensboro, NC (October 13–14)

TAF's Director of Patient Advocacy, Stephanie Marshall, attending the ninth-annual Fabry Support and Information Group Expert Family Conference

New Federal Policy Aims To Address Medical Debt

High out-of-pocket costs for treatment lead many of our patients to take on large sums of medical debt. A new Executive Order signed by President Biden aims to prevent medical debt from negatively impacting patients' credit scores.

If you or someone you know is struggling with medical debt, learn more about how this new policy may impact you: https://on.mktw.net/3xJz3bp.

TAF Launches Advocacy-focused Twitter Account

Last week, TAF launched a new advocacy Twitter account (@TAFAdvocacy) to increase our online presence and public awareness of our advocacy campaigns and initiatives. If you're on Twitter, encourage your friends and professional network to follow us.

Lend Your Voice and Bring Medical Advances and Treatment to the Rare Disease Community

More than 7,000 known rare diseases impact nearly 32 million Americans, and the lack of U.S. Food and Drug Administration (FDA)-approved treatment creates staggering emotional and financial burdens for both families and the healthcare system. The new Advanced Research Projects Agency for Health (ARPA-H) government agency could transform the rare disease landscape. Along with our partners, we believe this new agency must: undertake transformative projects regardless of disease prevalence; be guided by a patient advisory board with diverse rare disease representation; and work constructively and formally with the FDA.

Join Us - Lend Your Voice

We're Growing!

So far, TAF has added six new disease programs in 2022, bringing our total to 78. Below is a list of the most recent additions:

Amyotrophic Lateral Sclerosis (ALS) Financial Assistance Program
Asthma Copay Assistance Program
Cold Agglutinin Disease Financial Assistance Program
Ovarian Cancer Copay Assistance Program
Pancreatic Cancer Copay Assistance Program
Thyroid Cancer Copay Assistance Program

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

Purple Pro: Kayleigh Wingard, Claims Specialist

What is your favorite part about your job?

I really enjoy collaborating with my team members to work toward a common goal.

What are some of the most common questions you receive?

I often receive questions related to what plan benefit items are covered by each disease program.

What have you learned while working at TAF?

I've learned so much while working at TAF. I’ve gained insight into the enrollment process for patients and been able to communicate with patients to assist them in the process. Seeing firsthand how patients receive assistance from TAF has been very rewarding.

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

The three words I keep in mind are: communicate, investigate, and celebrate.

How are you trying to improve patients’ experience?

I know it can be especially frustrating for patients when they need to be reimbursed and we’re still missing documentation. I make sure to leave detailed notes on all my claims that are missing documentation so that information can be effectively communicated.

Describe what it’s like to work at TAF.

Working at TAF has been a wonderful experience. Being able to interact with patients and my team members has been very rewarding.

What is one fun fact about you?

I am great at rollerblading! It was a hobby I picked up as a kid and I never gave it up.

Which TAF value do you most identify with and why?

Passion. Passion for what I do is what drives me to come to work every day!

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: Chelsea, Neuromyelitis Optica Spectrum Disorder Copay Assistance Program

A great day for Chelsea used to involve a jog. An active mom, Chelsea loved the small-town life in Wauchula, Florida where she, her husband, Michael, and their families live.

“We’re very thankful that our parents are here in town,” Chelsea said.

In 2019, her busy life came to a halt. Chelsea began experiencing a tingling sensation on the left side of her body just after the birth of their daughter, Emma Grace. For a year the strange symptom would flair up and then disappear.

“I never thought anything else of it,” she said.

Months later the strange symptoms returned, this time in her eyes for up to a week at a time. She reached out to an ophthalmologist friend for advice.

“She told me, ‘Something is very wrong. Go to the hospital,’” Chelsea said. “It was a very uncertain and scary time for our family.”

But a brain MRI came back negative, and Chelsea’s doctors sent her home. She began getting her vision back. Days later, she experienced a fall that left her paralyzed on one side.

“The next day, I woke up and I couldn’t move my left leg,” she said. “I had no feeling in my body. I knew this wasn’t just a tweak in my neck.”

Extensive tests found the culprit: lesions throughout her neck and spine caused by neuromyelitis optica spectrum disorder.

Chelsea finally had an explanation for the years of mysterious nerve pain, aches, and vision difficulties. Her doctors immediately began infusion treatment to reduce the inflammation.

“I was in the hospital again for almost two weeks,” Chelsea said. “2020 was not our greatest year.”

While at her doctor’s office, Chelsea saw a pamphlet that mentioned The Assistance Fund’s (TAF’s) Neuromyelitis Optica Spectrum Disorder Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for prescribed FDA-approved treatment, such as copays, deductibles, and coinsurance. Within minutes, her application was accepted.

“I was able to stay home and rest, which was a huge blessing,” she said. “With TAF, I had more time with our daughter and could afford to pay off some of our medical bills.”

Now Chelsea focuses on taking a holistic approach to managing her symptoms. She diligently manages her sleep schedule and centers her meal-planning on fresh fruits and vegetables and gluten-free foods.

“It's a huge blessing to not have to worry about those costs,” Chelsea said. “I am beyond blessed and thankful for TAF.”

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.

Paying It Forward

Help change lives with 83 cents a day.

Pay it forward by joining our monthly giving program to assist people living with life-threatening, chronic, and rare diseases. By giving monthly, you can ensure people are able to access critical treatment.

Donate Today

Healthy Recipe: Ginger-Lime Chicken

Makes: Four servings

Time: 15 minutes

INGREDIENTS

1 ½ to 2 pounds boneless, skinless chicken thighs or breasts
Kosher salt and black pepper
⅓ cup mayonnaise
1 tablespoon lime zest (from about 2 limes), plus lime wedges, for serving
1 tablespoon finely grated fresh ginger (from a 3-inch piece of peeled ginger)

PREPARATION

Pat the chicken dry and season all over with 1 1/2 teaspoons salt. In a medium bowl, stir together the mayonnaise, lime zest, and ginger; season with salt and pepper. Add the chicken to the mayonnaise mixture and stir to coat. (The chicken can sit in the marinade for up to 8 hours in the fridge. Let come to room temperature before cooking.)
To grill: Heat a grill to medium-high. Grill the chicken over direct heat until cooked through and juices run clear, about 5 minutes per side for thighs and about 4 minutes per side for breasts, turning as necessary to avoid burning.
To cook in a skillet: Heat a large skillet over medium-high. Cook the chicken until juices run clear, about 5 minutes per side for thighs and about 4 minutes per side for breasts.
Serve chicken with lime wedges, for squeezing on top.

(Source: The New York Times)