Provider Newsletter: Winter 2024 |
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President's Message
Dear colleagues,
I hope you and your family are having a wonderful start to 2024. Here at The Assistance Fund (TAF), we've been hard at work completing our annual Reenrollment process and notching several notable accomplishments.
With Reenrollment coming to a close, I'm proud to announce we approved over 20,000 people for 2024 assistance. That's more than 20,000 moms, dads, siblings, children, and loved ones who now have the peace of mind of knowing they will continue to have access to the treatment they need this year. One of the Reenrollment data points I am most proud of is our 94% Net Promoter Score, which reflects a high level of patient satisfaction with their experience with TAF.
Over the next few months, we will be sending patients important instructions on how to register for our new Patient Portal. The Patient Portal is a one-stop-shop for patients to review their disease program information, submit and monitor reimbursement requests, update contact information, and stay up to date with important news from The Assistance Fund. Similar to our Reenrollment process, we will be staggering invitations to register for the Patient Portal by disease groups to ensure patients have a smooth experience.
Please take a look at the rest of our news and updates below. I am grateful to each of you for all you do to help our patients stay healthy, manage their conditions, and get the care they need.
Danielle Vizcaino
President and CEO
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TAF Patient Advocates Featured on CBS Sunday Morning
In January, two of TAF’s Patient Advocates represented our organization on national television. On Sunday, January 7, CBS Sunday Morning featured Gineris Ortiz and Kayla Zuniga in a segment about how some organizations are using artificial intelligence in place of customer service professionals.
The takeaway: Artificial intelligence will never replace the genuine empathy customer service professionals provide. As Gineris said, “When you call, sometimes you just need someone to listen.”
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Gineris Ortiz and Kayla Zuniga alongside TAF's Senior Director of Communications,
Margaret Figley, and journalist, David Pogue
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TAF Earns Top Marks From National Charity Rankings
The Assistance Fund was honored to be named one of Forbes' top charities for the fourth year in a row, ranking #70 on their America's Top Charities list. And in January, TAF received the Platinum Seal of Transparency from Candid/Guidestar and was named a top-rated nonprofit by GreatNonprofits. We are grateful to the entire TAF family of patients, healthcare providers, staff, and our generous donors for making our work possible.
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We're Growing!
TAF opened two new disease programs this year, bringing our total to 91. Our newest disease programs assist people living with:
- Neurofibromatosis
- 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 applications 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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Advocacy Update
In a major win for patients using copay assistance, the U.S. Department of Justice dropped its appeal of a court ruling seeking to limit the use of copay accumulator programs by health insurers. Copay accumulator programs allow insurers to not count copay assistance toward a beneficiary's deductible and out-of-pocket maximum. TAF will continue to advocate to ensure copay assistance counts with the Biden Administration and by supporting the HELP Copays Act in Congress. Sign up today to receive our grassroots advocacy emails and make your voice heard on this and other issues important to patients.
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Purple Pro: Melissa Oquendo, Patient Advocate |
What is your favorite part about your job?
The best part of my job is helping patients in need and being able to answer their questions.
What have you learned while working at TAF?
Patients ask how they can apply and what their disease program covers.
What three words best describe how to be successful at your job?
Detailed, accurate, and empathetic.
How are you trying to improve patients’ experience?
By answering any questions they have and providing as much detail as possible. I want to help them in any way I can to make their lives a bit easier.
Describe what it’s like to work at TAF.
The professionalism and drive here not only satisfies me but helps satisfy patients by showing we care.
What is one fun fact about you?
I like reptiles! I have two crested geckos.
Which TAF value do you most identify with and why?
People. Sometimes my job is just to be a listening ear to let people talk about the things they are going through.
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Conference Attendance
On the Road
The Assistance Fund will continue to attend a range of conferences in 2024. Here's where we're headed in the next quarter of the year:
- WORLDSymposium on Lysosomal Disease Research, February 5–9
- Fabry Support & Information Group (FSIG) Expert Fabry Conference, February 9–11
- Access USA, March 19–21
- MGFA Annual Patient Conference, April 28–30
- Asembia ASX24 Summit, April 28 - May 2
- Idiopathic Hypersomnia Foundation Conference, May 31 - June 2
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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.
"I would never have been able to afford this medication and be able to lead a near normal life." — James
"TAF assistance made life with Parkinson's disease less stressful for my parents and helped them not go into debt." — Laura
"I wouldn't be able to afford my aHUS treatment without TAF. They're such a blessing in my life." — Jessica
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Patient Profile: Judi, Pulmonary Hypertension Copay Assistance Program
Judi and Ron met when she was a flight attendant in the 1960s. During her career in the skies, she participated in one of the first Boeing 727 flights. More than 55 years later, Judi says she and Ron are still each other’s best friends.
“In those days, you weren’t allowed to date a passenger!” Judi said. “After two years, I had to leave. We wanted to get married.”
After the wedding, they moved to California. Judi received her master’s degree in counseling from California State University, Fullerton, and served as executive director of several groups that assist people experiencing homelessness.
“I’m very open and do my best to listen to people and their concerns,” she said.
Two children and 38 years in the Bear Republic were plenty, and it was time for a change of scenery: Charlotte, North Carolina. But Judi’s dedication to serving the less fortunate never wavered. She volunteered with the nonprofit organization, Home Again Foundation, and is a peer-to-peer counselor with the Patient Family Advisory Council at the Levine Cancer Institute.
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Ten years since her initial stage four breast cancer diagnosis, Judi provides wisdom and firsthand advice on how to battle the disease.
“The Council is very patient-centric, which is fabulous,” she said. “I try to help people through their journey.”
Judi is also living with pulmonary hypertension, a chronic condition of the lungs and heart. Through her work, she provides information to new patients on the financial assistance options available, including The Assistance Fund (TAF), from which she has received assistance for more than a year.
“My treatment was between $900 and $1,000 a month,” Judi said. “I don’t know how anyone could do it without assistance.”
TAF’s Pulmonary Hypertension Copay Assistance Program provides eligible individuals with financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for pulmonary hypertension, such as copays, deductibles, and coinsurance. It took Judi just minutes to apply.
“When the acceptance letter came through, I was elated,” she said. “I just cannot say enough about TAF and all they do. Without TAF, there would be no way that Ron and I could do this.”
Judi refuses to entertain negative thoughts, insisting people in her life wear a smile and stay positive.
“There are people who will come to me and say, ‘I’m so sorry about your diagnosis,’” Judi said. “I never allow that in my life. I’m just so doggone grateful.”
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Upcoming Disease Awareness Months |
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February:
- Cancer Prevention Month
- Gallbladder Cancer and Bile Duct Cancer Awareness Month
- Heart Month
- Macular Degeneration Awareness Month
- Cancer Awareness Day - February 4
- International Epilepsy Day - February 12
March:
- Amyloidosis Awareness Month
- Bleeding Disorders Awareness Month
- Multiple Sclerosis Awareness Month
- NMO Awareness Month
- National Kidney Month
- Certified Nurses Day - March 19
- National Doctors' Day - March 30
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April:
- Fabry Disease Awareness Month
- Immunodeficiency Awareness Month
- Oral, Head, and Neck Cancers Awareness Month
- Parkinson's Disease Awareness Month
- Porphyria Awareness Month
- Spondyloarthritis Awareness Month
- World Health Day - April 7
- World Parkinson's Day - April 11
- International Pompe Day - April 15
- World Hemophilia Day - April 17
- National Sarcoidosis Day - April 30
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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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The Assistance Fund
8427 Southpark Circle, Suite 100
Orlando, FL 32819
Hours: Monday through Friday, 8 a.m. – 7 p.m. ET
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