President's Message
Hello Friends,
I hope you're having a happy and healthy spring. With summer just around the corner, there are great things happening at The Assistance Fund (TAF).
The Assistance Fund continues to grow. Since January, we've opened six new disease programs for people living with amyotrophic lateral sclerosis, asthma, cold aggultinin disease, ovarian cancer, pancreatic cancer, and thyroid cancer, bringing our total to nearly 80. 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've begun 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 I can't wait to attend the Healthcare Advocate Summit in September. I'm excited to reconnect with our friends, patients, and partners.
I know how critical our reimbursement process is for your patients. At TAF, we strive to offer a user-friendly system for receiving and processing reimbursements. Be sure to check out our tips below to ensure your patients quickly receive their reimbursements. And if you have ideas for ways we can improve, please 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 our patients at the heart of everything we do.
Sincerely,
Mark McGreevy
President and CEO
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Jan Wigington, Director of Operations |
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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.
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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.
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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.
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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 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
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TAF Hires New Vice President of External Affairs
In February, TAF hired veteran health policy expert Missy Jenkins as its new Vice President of External Affairs. In her previous roles, 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.
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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.
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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!
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Conference Attendance
On the Road
In 2022, TAF will attend a wide range of conferences. Here's where we're headed next:
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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)
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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)
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TAF's Director of Patient Advocacy, Stephanie Marshall, attending the ninth-annual Fabry Support and Information Group Expert Family Conference in April 2022. |
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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.
“I spoke with a TAF Patient Advocate who kept me so positive and informed,” – Dennis, Neurotrophic Keratitis Financial Assistance Program
“When I spoke with a Patient Advocate, they told me, ‘Do not worry!' And they meant it. TAF is such a wonderful service.” – Susan, Pulmonary Hypertension Copay Assistance Program
“When I spoke to a Patient Advocate on the phone, they made me feel like I was the only person there.” – Adam, Hereditary Angioedema Financial Assistance Program
You can read more of their stories on our patient Medium blog. Follow The Assistance Fund today!
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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.”
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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.”
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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
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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
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TAF staff wearing orange for Multiple Sclerosis Awareness Month. |
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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.
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Christina's Corner
It's always an exciting time when we're able to open a new disease program at The Assistance Fund. This year, we've already opened six! If you have any questions about our new programs for people living with ALS, asthma, cold agglutinin disease, ovarian cancer, pancreatic cancer, or thyroid cancer, please contact me.
Looking ahead, our operations and IT teams are committed to making our reimbursement process as user-friendly as possible. We know how important it is for our patients to receive their reimbursements in a timely manner. We're hard at work — we'll have more to share this summer.
Christina Abbene, Program Manager
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Headquarters
4700 Millenia Blvd., Suite 410
Orlando, FL 32839
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Washington, DC, Office
655 15th St. NW, Suite 502
Washington, DC 20005
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