Provider Newsletter: Fall 2023 |
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President's Message
Hello friends,
I hope your fall is off to a great start. At The Assistance Fund (TAF), we've been hard at work, launching four new programs for people living with small cell lung cancer, biliary tract cancer, epidermolysis bullosa, and idiopathic hypersomnia, and preparing for our upcoming Reenrollment period. Information on Reenrollment is coming soon, so please be sure to encourage your patients to monitor our website and their email inboxes for important information.
Last month, we launched our 2022 Impact Report, highlighting five of our patients who are living "beyond a diagnosis." This year's theme is an important reminder of something you know well—each person we serve is more than just a patient. They are parents, siblings, friends, and community members, each with a unique experience. I hope you’ll take a moment to read their moving and inspirational stories.
Thank you to everyone who voted for The Assistance Fund for Charity Navigator's 2023 Community Choice Award. The Charity Navigator Community Choice Awards were created to empower supporters to recognize and celebrate the exceptional work of top-rated charities. Even though TAF did not receive the final award, it is a tremendous honor to be considered and we are grateful for your support.
Enjoy the rest of our news and updates below. Thank you for everything you do each day to help our patients stay healthy and get the important care they need.
Danielle Vizcaino
President and CEO
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Jan Wigington, Senior Director of Operations |
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Operations Update: 2024 Reenrollment
My name is Jan Wigington and I'm the Senior Director of Operations. Once again, TAF Reenrollment will be organized into two groups: purple and teal. As 2024 Reenrollment approaches, please ensure your patients' contact information, including their email address, mailing address, and phone number, is up to date. Patients can update their contact information by visiting our website and clicking on the "Update Email Address" button near the top of the page, or by calling us at (855) 845-3663. And if patients have moved in the past year, they should contact the USPS to give them their new address.
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TAF's 2022 Impact Report: Beyond a Diagnosis
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, including more than 40,000 just last year. While the numbers are impressive, each represents a person and family with a unique story. Our 2022 Impact Report, "Beyond a Diagnosis," highlights the stories of just a few of the people we serve and the different ways they’re staying active in their communities. We are so grateful to the TAF family and our generous donors who allow us to help so many people each year.
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We're Growing!
TAF opened four new disease programs this summer, bringing our total to 89. Our newest disease programs assist people living with:
- Biliary Tract Cancer
- Epidermolysis Bullosa
- Idiopathic Hypersomnia
- Small Cell Lung Cancer
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Important Provider Referral Information
The Assistance Fund communicates with patients after you apply on their behalf. TAF sends patients an application with important information at the top that is specific to each individual patient. This information helps us assign the application to the correct patient. Please do not alter this information, white-out text, or send a blank generic application. We will no longer accept generic applications. Patients will receive their specific application in the mail to complete, sign, and send back to us within 30 days.
REMINDER: TAF requires healthcare, pharmacy, and reimbursement services providers to accurately identify themselves when applying on behalf of patients.
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The Inflation Reduction Act: What to Know
The Inflation Reduction Act of 2022 (IRA), signed into law by President Biden on August 16, 2022, includes several provisions to lower prescription drug costs for people with Medicare and reduce drug spending by the federal government.
TAF’s Executive Leadership team is closely monitoring ways the IRA may impact independent charitable patient assistance organizations. Last month, we established an IRA Strategy Working Group that is tasked with:
- evaluating how the IRA will impact charitable patient assistance organizations;
- developing a strategy and models to effectively navigate post-IRA implementation;
- advising government agencies, like the Centers for Medicare and Medicaid Services, on how this law will impact charitable patient assistance organizations and the patients TAF serves; and
- identifying opportunities to educate the patients we serve, as well as the providers and donors we work with.
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Purple Pro: Emily Friedman, Patient Relations Specialist |
What is your favorite part about your job?
The best part of my job is when I can remove a burden or worry from a patient’s plate. There is no better feeling in the world.
What have you learned while working at TAF?
I've learned the importance of assisting every patient as if they were my own family member.
What three words best describe how to be successful at your job?
Kindness, detail-oriented, and patient-centric.
How are you trying to improve patients’ experience?
I try to give them all the information they need before they run into a bump in the road, and submit any suggestions they have on what would make the process better.
Describe what it’s like to work at TAF.
It's like a small family that has the ability to make a positive change in others' lives.
What is one fun fact about you?
I used to be a professional singer.
Which TAF value do you most identify with and why?
Passion and people. I am passionate about helping people. I feel this has always been my calling.
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Conference Attendance
On the Road
In 2023, TAF will continue to attend a range of conferences in 2023. Here's where we're headed next:
- Global Genes Rare Health Equity Forum and Rare Advocacy Summit (September 18–21)
- XLH Network Patient Day (September 22–23)
- GBS/CIDP Annual Scientific Symposium (October 5–7)
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Gerald Lauria, Chief Development Officer, and Mark Meier, Senior Manager of Communications, at the 2023 Healthcare Advocate Summit in New Orleans, LA. |
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Read Patients' Stories on Our Medium Page
At TAF, we know life for people who have a life-threatening, chronic, or rare disease can be challenging physically and emotionally. Every month, we share the stories of patients from around the country in our Medium patient blog. These inspiring stories highlight the vibrant lives our patients are leading. Whether it's volunteering, pickleball, playing music, or taking scenic drives, each story is powerful.
"Now, I have my mobility back and with it my life. The Assistance Fund made it all possible!" — Marc
"Being approved takes the burden off of me in more ways than you know." — Tracy Mae
"I had to do without prescribed medications sometimes before TAF started helping me. I couldn't get them without TAF assistance." — Michael
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Patient Profile: Carol, Primary Biliary Cholangitis Financial Assistance Program
The songwriter John Denver once wrote that Colorado was the place, “Where the sky looks like a pearl after a rain.” And since Carol has lived in Colorado with her family, she’s seen that pearl regularly.
“It’s best to just enjoy every day,” Carol said. “You don’t know what tomorrow will bring.”
After several years as a stay-at-home mom, Carol worked for years as a grant specialist at the University of Colorado, Boulder, near her home in Denver. Though she’s now retired, Carol misses the camaraderie of her team.
“I miss working, I really do,” she said. “I don’t feel old in my mind. Not at all!”
Carol is surrounded by friends and family in the Denver metro area, as well as her adult son, who lives with her.
“Together, we can do OK,” Carol said. “The mountains here are wonderful, and it is beautiful when the Aspen trees turn.”
It wasn’t until Carol was in the hospital managing a separate diagnosis that she learned her liver enzyme numbers were abnormally high. When tests confirmed she had a chronic liver disease called primary biliary cholangitis (PBC), she was stunned.
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“I remember thinking, ‘I’ve been a vegetarian for decades and I don’t drink. How could I have this?’” Carol said.
People living with PBC have difficulty with digestion and the removal of bile from the liver. Treatment is necessary to slow down the damage to the liver.
“I had all kinds of questions,” Carol said. “I had to research and read and read some more.”
Carol’s career left her with some savings, but most of her limited monthly income goes to her home and living expenses. Carol was stunned to see how much her treatment could cost.
“One of the treatments for PBC costs $9,000 a month,” she said. “I was so, so worried,”
Her hepatologist at UCHealth referred her to The Assistance Fund’s (TAF’s) Primary Biliary Cholangitis Financial Assistance Program. The program provides assistance for copays, deductibles, premiums, and ground travel costs.
“The application was so easy to fill out,” Carol said. “Whenever I call, everyone is just so nice and patient.”
Since receiving treatment, Carol’s health has dramatically improved, and her bloodwork has returned to normal. Now Carol is focused on what matters most: her health and caring for her son, who recently started a new job.
“I’m very, very grateful to TAF,” she said. “The whole organization is wonderful. This could have never happened without their help.”
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Upcoming Disease Awareness Months
September:
- Blood Cancer Awareness Month
- ITP Awareness Month
- Leukemia and Lymphoma Awareness Month
- Ovarian Cancer Awareness Month
- Primary Biliary Cholangitis Awareness Month
- Prostate Cancer Awareness Month
- Pulmonary Fibrosis Awareness Month
- Sickle Cell Disease Awareness Month
- Duchenne Action Day - September 7
- World PBC Day - September 11
- World aHUS Day - September 24
October:
- ASMD Awareness Month
- Breast Cancer Awareness Month
- Gaucher Disease Awareness Month
- Liver Cancer Awareness Month
- Niemann-Pick Disease Awareness Month
- Pancreatic Cancer Awareness Month
- Rett Syndrome Awareness Month
- World Mental Health Day - October 10
- World Psoriasis Day - October 29
- World HPP Day - October 30
November:
- Alpha-1 Awareness Month
- Epilepsy Awareness Month
- Lung Cancer Awareness Month
- National Family Caregivers Month
- Pulmonary Hypertension Awareness Month
- Stomach Cancer Awareness Month
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Hyperoxaluria Awareness Week - November 7–12
- Acromegaly Awareness Day - November 1
- NET Cancer Day - November 10
- Iron Deficiency Day - November 26
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TAF staff wearing red for Duchenne Action Day. |
December:
- Crohn's and Colitis Week - December 1–7
- Infantile Spasms Awareness Week - December 1–7
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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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New Headquarters:
8427 Southpark Circle, Suite 100
Orlando, FL 32819
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Washington, DC, Office
655 15th St. NW, Suite 502
Washington, DC 20005
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Hours: Monday through Friday, 8 a.m. – 7 p.m. ET
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