Provider Newsletter: Fall 2024 |
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President's Message
Dear colleagues,
I hope your September is going well. This summer, The Assistance Fund (TAF) released its 2023 Impact Report. 2023 was a year of change and growth for TAF as we continue to increase the breadth of the support we provide. It's an honor to lead an organization helping more than 40,000 children and adults access the critical treatment they need.
I want to thank those of you who took time this summer to vote for TAF during Charity Navigator's Community Choice Awards. Your support resulted in our being named a finalist for the second year in a row. While we did not win, being nominated is a powerful reminder of the meaningful impact The Assistance Fund is having on people across the country.
As we enter the fall season, I know reenrollment is on many of your patients' minds. Our team is hard at work finalizing our 2025 reenrollment process. Please ensure your patients are monitoring their email inboxes, our website, our social media accounts, and our new Patient Portal for information about key dates and deadlines.
I hope you'll read the rest of our news and updates below. From all of us at The Assistance Fund, I hope you and your loved ones have a great start to the fall season.
Sincerely,
Danielle Vizcaino
President and CEO
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TAF Releases 2023 Impact Report
The Assistance Fund's 2023 Impact Report features the powerful stories of just a few of the children and adults we serve. Thanks to our generous donors, we continue to support tens of thousands of people access the treatment they need. Among them are Andi, Ella, Tony, Billy, and Barbara, whose stories are featured in this report. Access to critical treatment allows Barbara to continue her travels and sightsee with her daughter. It's helping Ella grow up as a normal kid. And it lets Andi continue to paint masterpieces, including her winning submission to TAF’s 2023 patient art contest.
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Operations Update: Important Reimbursement Updates
Ensuring patients receive timely reimbursements is a priority for The Assistance Fund. This fall, we are rolling out important enhancements and information to ensure a fast and seamless process.
Reimbursements and What to Know: We recently launched a new webpage for reimbursement, including detailed instructions and sample documents for all reimbursement categories. To learn more, visit https://tafcares.org/patients/reimbursements/.
PNC Bank Direct Electronic Payment: Beginning Monday, September 23, 2024, TAF will provide reimbursements by direct electronic payment. If your patients have a TAF-issued PNC Bank debit card, they may continue to use the card until Saturday, January 4, 2025; however, the card will be deactivated on Sunday, January 5, 2025. For more information, visit tafcares.org/pnc-bank.
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TAF Named Finalist for Charity Navigator's Community Choice Awards
The Assistance Fund was thrilled to be named a finalist for Charity Navigator's Community Choice Awards for the second year in a row. It was an honor to be named among so many impactful, influential nonprofits from around the country. Thanks to the support of thousands of TAF patients, our provider community, and the extended TAF family, TAF inclusion has increased awareness of our programs, allowing us to reach even more people in need.
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Rare Diseases: Did You Know?
Did you know? About one-half of all rare diseases affect children. The Assistance Fund (TAF) is committed to supporting the rare disease community and more than half of our disease programs are rare disease programs.
This summer, TAF exhibited and presented at patient advocacy conferences for children, young adults, and families impacted by rare, and ultra-rare diseases to raise awareness of available financial resources. We were proud to be part of the International Rett Syndrome Foundation, Parent Project Muscular Dystrophy (PPMD), National Niemann-Pick Disease Foundation, and debra of America annual patient conferences. The opportunity to interact with so many children, young adults, parents, grandparents, and patient advocates is critical to our mission.
TAF is proud to partner with patient advocacy organizations to raise awareness of our disease programs, educate the community about financial assistance, and to learn more about the unique needs facing children and families impacted by rare disease so we can better support them.
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We're Growing!
TAF opened seven new disease programs this year, bringing our total to 96. Our newest disease programs assist people living with:
- Atopic dermatitis
- COPD
- Heart failure
- Nonalcoholic steatohepatitis (NASH)
- Neurofibromatosis
- Post-traumatic stress disorder (PTSD)
- Systemic sclerosis
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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 not 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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Purple Pro: Shaukie Fenn, Patient Advocate |
What is your favorite part about your job?
Connecting with patients and being able to meet their needs.
What have you learned while working at TAF?
I’ve learned to educate myself on the resources available for patients and how to be more empathetic. I’ve also learned how to teach patients to advocate for themselves.
What three words best describe how to be successful at your job?
Transparency, integrity, and being collaborative with my coworkers.
How are you trying to improve patients’ experience?
Clear communication, make sure patients understand the disease program, and treat them with respect.
Describe what it’s like to work at TAF.
It’s a humbling experience.
What is one fun fact about you?
I love hockey. Go Solar Bears!
Which TAF value do you most identify with and why?
Passion. I have a passion for helping those in need.
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Conference Attendance
On the Road
The Assistance Fund is attending a range of conferences in 2024. Here's where we're headed in the next quarter:
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Global Genes Annual Summit, September 25–28
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XLH Network Patient Day (presenting), October 11–13
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Stephanie Marshall, Director of Patient Advocacy, and Mark Meier, Senior Manager of Communications, at the 2024 WORLDSymposium in San Diego, CA. |
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Read Patients' Stories on Our Medium Page
At TAF, we know life for people who have a life-changing 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 advocating for people with rare diseases, each story is powerful.
"I would need a liver transplant if it wasn't for the Assistance Fund." — Madeline, a TAF patient
"You have allowed me to see that there is a future." — Kate, a TAF patient
"I truly appreciate all your hard work in helping me get the medicine I need." — Dwight, a TAF patient
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Patient Profile: Tim, Amyloidosis Financial Assistance Program
Anyone who knows Tim would say he is a realist. As one of 13 siblings in a half-Irish, half-German family just outside Philadelphia, it’s the way he’s always been. A patient in The Assistance Fund’s (TAF’s) Amyloidosis Financial Assistance Program, Tim isn’t shy about sharing how he feels each day.
“I don’t want to paint a rosy picture,” he said. “I have lots of friends and family and when they ask, I tell them, ‘I am where I’m going to be.’”
Tim first started experiencing symptoms in 2011: tingling feet, changes in his fine motor skills, and severe gastrointestinal issues.
Every day, he felt like he was getting kicked in the stomach. For years, he carried on as best he could. After seeing 17 different specialists, Tim was left to decipher between several different potential diagnoses, like gastroesophageal reflux disease and issues with his gallbladder.
“It was a long process,” Tim said. “I thought to myself, ‘What is wrong with me?’”
When Tim woke up on Christmas Eve, 2019, he couldn’t take it anymore. He called his family doctor who recommended he see a cardiologist right away. Thankfully, Tim lived just miles from world-class doctors at the University of Pennsylvania, where he hoped he would get a definitive answer.
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“Everybody seems to have a cardiologist,” he joked.
Because of the COVID-19 pandemic, Tim had to wait months to complete a range of tests. But when the test results came back in September 2020, the doctor informed Tim that he had evidence of a previous heart attack, high levels of chronic health failure, as well as amyloidosis.
“I had no idea what he was talking about,” Tim said. “But it was a relief.”
To help with the cost of his care, Tim’s nurse told him about organizations that offered financial assistance for amyloidosis, like The Assistance Fund. TAF’s Amyloidosis Financial Assistance Program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for amyloidosis, including prescription drug copays, health insurance premiums, and incidental medical expenses.
“When I first got on my treatment, I saw the eye-popping copay,” he said. “Without TAF, I don’t know where I’d be.”
Because amyloidosis is genetic, Tim encouraged each of his siblings, and their extended families, to get genetically tested and see if they carry the gene linked to the disease. That testing has revealed many of Tim’s siblings are also living with amyloidosis.
“Two of my siblings were in denial,” Tim said. “I’ve learned to accept that I am what I am. I told them, ‘That’s crazy — if you know, you can get treated!’”
With access to his treatment, Tim’s condition has stabilized, giving him more time with his wife, friends, children, and large extended family in the area. Tim and his wife have eight grandkids between the ages of two to 17, and they’re often visiting — running all over the house making noise.
“They’re good kids,” Tim said. “I have a lot of bad days, but they’re helping me stay alive.”
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Upcoming Disease Awareness Months |
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September:
- Blood Cancer Awareness Month
- Duchenne Muscular Dystrophy Awareness Month
- ITP Awareness Month
- Leukemia and Lymphoma Awareness Month
- Ovarian Cancer Awareness Month
- PBC Awareness Month
- Prostate Cancer Awareness Month
- Pulmonary Fibrosis Awareness Month
- Sickle Cell Disease Awareness Month
- Thyroid Cancer Awareness Month
- Inflammatory Eye Disease Week — September 16–22
- Duchenne Awareness Day — September 7
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World PBC Day — September 10
October:
- Breast Cancer Awareness Month
- Eczema Awareness Month
- Gaucher Disease Awareness Month
- Liver Cancer Awareness Month
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- Niemann-Pick Awareness Month
- Rett Syndrome Awareness Month
- World Mental Health Day — October 10
- World Psoriasis Day —October 29
November:
- Alpha-1 Awareness Month
- C.diff Awareness Month
- COPD Awareness Month
- Epilepsy Awareness Month
- Family Caregivers Awareness Month
- Lung Cancer Awareness Month
- National Healthy Skin Month
- Pancreatic Cancer Awareness Month
- Pulmonary Hypertension Awareness Month
- Stomach Cancer Awareness Month
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World Acromegaly Awareness Day — November 1
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NET Cancer Day — November 10
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Iron Deficiency Day — November 26
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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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TAF Headquarters:
8427 Southpark Circle, Suite 100
Orlando, FL 32819
Hours: Monday through Friday, 8 a.m. – 7 p.m. ET
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