TAF Summer 2023 Provider Newsletter

Provider Newsletter: Summer 2023

President's Message

Hello friends,

I hope you are all having a wonderful start to summer. For those of you who do not know me, my name is Danielle Vizcaino, and I'm The Assistance Fund's (TAF's) new President and CEO. From my earliest days at TAF, I’ve been humbled and honored to work for an organization dedicated to helping people with life-threatening, chronic, and rare diseases get the treatment they need.

Since I started at TAF in 2016, I've served as Vice President of Operations, Senior Vice President of Operations, Philanthropy, and Communications, and most recently as Chief Operating Officer, where I've been focused on delivering best-in-class service to the patients we serve and you—the people who work so tirelessly to keep them healthy. It has never been lost on me just how great an impact we can make every single day. I’ve been lucky to have seen this impact up close while leading day-to-day operations at TAF, and now, I’m incredibly honored and excited to take the helm as President and CEO.

Our team has been hard at work preparing several new and exciting projects to improve patients' and providers' experiences so stay tuned this summer. I'm committed to seeing the day when no patient goes without treatment because of an inability to pay. That vision is only possible thanks to all you do for our patients. For that, I am incredibly grateful, and I look forward to partnering together. Please enjoy the rest of our news and updates below.

Danielle Vizcaino

President and CEO

Jan Wigington, Director of Operations

Operations Updates

New TAF Headquarters

My name is Jan Wigington. I'm TAF's Director of Operations, and I'd like to share two important summer updates. Effective July 15, 2023, TAF will be moving to a new office location in Orlando. While we will have mail forwarding services, for the most timely and efficient service it is important you and your patients mail paper applications and reimbursement requests to our new address: 8427 Southpark Circle, Suite 100, Orlando, FL 32819.

New Grant-based Disease Programs

This month, TAF launched a new initiative that will allow us to help more patients access the critical treatment they need. Our new grant-based programs set limits to medication copayments in a small number of disease programs where there is high variability in patient out-of-pocket costs. For more information, visit our Provider FAQs.

TAF Announces Winners of Its Second Annual Kaleidoscope of Life Art Contest

We received more than 150 submissions for our second annual Kaleidoscope of Life Art Contest, more than twice as many as last year. A panel of TAF staff had the tough task of picking just five winners! Each of the artists below received a TAF swag bag valued at $50. Here are our five talented winners:

Andi C., Primary Immunodeficiency Financial Assistance Program

Mallory H., Long-chain Fatty Acid Oxidation Disorders Financial Assistance Program

Patricia C., Pulmonary Hypertension Copay Assistance Program

Dallas D., Multiple Sclerosis Copay Assistance Program

Judith N., Nontuberculous Mycobacterial Lung Disease Financial Assistance Program

We're Growing!

TAF opened four new disease programs this spring, bringing our total to 85. Our newest disease programs assist people living with:

Activated Phosphoinositide 3-kinase Delta Syndrome (APDS)
Immunoglobulin A Nephropathy
Rett Syndrome
Sickle Cell Disease

View a Full Listing of TAF's Disease Programs

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.

TAF Welcomes Seven New Members to Its Advocacy Committee

TAF's Advocacy Committee comprises patient advocates, policy experts, and public affairs professionals who share a commitment to ensuring patients have access to care, testing, and treatment. The Committee provides expert input to assist TAF’s Executive Leadership team in determining and advancing its strategic advocacy objectives. This year, the Committee welcomed seven new members:

Mark Atalla, Former Advisor, CMS, Center for Medicare and Medicaid Innovation at Centers for Medicare and Medicaid Services

Eboné M. Lockett, M.S., CEO, Harvesting Humanity, LLC

Srulik Dvorsky, Co-founder, CEO, TailorMed

Sohail Rana, Pediatrician/Professor of Pediatrics and Child Health, Howard University Hospital

Tia Goss Sawhney, Owner and Managing Director, Teus Health, LLC

Ann Jackson, Founder and Executive Director, Center for Food Equity in Medicine

Thayer Roberts, Deputy Director, Partnership to Improve Patient Care

Meet Our Advocacy Committee

TAF Helps Mobilize All Copays Count Coalition To Protect Financially Vulnerable Patients

This spring, TAF worked with coalition partners in support of the Help Ensure Lower Patient (HELP) Copays Act to protect financially vulnerable patients. The legislation, currently being considered by Congress, would require health insurers to count the value of copay assistance toward a patient’s out-of-pocket maximums. TAF mobilized over 620 TAF Advocates who reached out to their member of Congress, urging them to support the bill.

Purple Pro: Nicole Robinson, Resolution Specialist

What is your favorite part about your job?

I love being able to assist patients one by one to resolve any issues.

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?

Knowledge, focus, and accountability.

How are you trying to improve patients’ experience?

I'm trying to improve the patients' experience by keeping our word to contact them and staying in communication with them until their issue is resolved.

Describe what it’s like to work at TAF.

It's a fun environment!

What is one fun fact about you?

I like to read.

Which TAF value do you most identify with and why?

Passion. I love helping and assisting people in any way I can.

Conference Attendance

On the Road

In 2023, TAF will attend a wide range of conferences. Here's where we're headed next:

Parent Project Muscular Dystrophy (PPMD) Annual Conference (June 29–July 2)
US HAEA National Summit (July 20–22)
National Niemann-Pick Disease Foundation Family Support and Medical Conference (July 20–22)
Healthcare Advocate Summit (September 6–8)
Global Genes Rare Health Equity Forum and Rare Advocacy Summit (September 18–21)

Stephanie Marshall, Director of Patient Advocacy, and Mark Meier, Senior Manager of Communications, at the 2022 International Conference on Stigma at Howard University in Washington, DC.

Read Patients' Stories on Our Medium Page

At TAF, we know life for people living with 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.

"TAF assistance is dramatically changing my life for the better. Thank you so much!" — Viron

"The difference in my quality of life is incalculable because of your efforts on my behalf." — Francine

“You really give me a boost for my health and peace of mind. I am truly deeply grateful." — Carol

Follow Our Patient Stories Blog

Patient Profile: Marge, Idiopathic Pulmonary Fibrosis Copay Assistance Program

Marge is fascinated by history. Every day after she has her coffee and breakfast, she breaks out her Kindle to read.

"My favorite is historical fiction," Marge said. "My dad was a war veteran, and I’m just fascinated by things that went on."

When she’s not reading, Marge spends as much time as possible with her family. Despite living hundreds of miles apart, Marge makes sure to FaceTime Tegan, her three-year-old granddaughter, and her daughter, Christine, several times a week. The two, Marge said, are the loves of her life.

"Tegan’s so comical," she said. "I just love her to pieces."

Being able to drive down to Virginia from Connecticut to see her daughter is important to Marge. She lives with idiopathic pulmonary fibrosis and needs treatment that doesn’t leave her with awful side effects.

"I have 10 or 12 medications," Marge said. "I need to have all of my faculties and senses to drive."

When Marge’s doctor prescribed her treatment, she paid the copay out of pocket for a few months. But the cost was enormous. Marge said she worried about affording electricity and food.

"Who knows what I was going to try to do, but I was going to try to make it work," Marge said. "I need this medicine."

Marge was referred to The Assistance Fund’s (TAF’s) Idiopathic Pulmonary Fibrosis Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for all FDA-approved treatment for idiopathic pulmonary fibrosis, such as copays, deductibles, and coinsurance.

"I am just so grateful," Marge said. "It really brought me peace of mind. I thought, 'this is going to be okay.'"

After a year of financial assistance, Marge was ready to apply for Reenrollment in the fall. Marge said she was grateful to be quickly notified that she would have assistance for an entire year, allowing her to focus on spending time with her family.

"Oh my God, these people are angels," she said. "Words cannot express my gratitude."

Upcoming Disease Awareness Months

June:

Acute Myeloid Leukemia Awareness Month
Myasthenia Gravis Awareness Month
Men's Health Week (June 12–20)
Kidney Cancer Day - June 15

July:

Graves' Disease Awareness Month
Juvenile Arthritis Awareness Month
Parathyroid Awareness Month
World Hepatitis Day - July 28

August:

Psoriasis Awareness Month

September:

Blood Cancer Awareness Month
ITP Awareness Month
Leukemia and Lymphoma Awareness Month
Ovarian Cancer Awareness Month
Primary Biliary Cholangitis Awareness Month
Pulmonary Hypertension Awareness Month
Sickle Cell Disease Awareness Month
Duchenne Awareness Day - September 7
World PBC Day - September 11
World aHUS Day - September 24

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TAF staff wearing grey for Parkinson's Disease Awareness Month.

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.

Christina's Corner

I hope you're having a great start to summer. We've been busy this spring, opening four new programs for people living with APDS, immunoglobulin A nephropathy, Rett syndrome, and sickle cell disease, on top of the great news about our new President and CEO.

I wanted to let you know about an important new resource we've created for you. With the launch of our new grant-based programs, don't miss our one-pager with frequently asked questions. You can find it in the Library section of the Provider Portal.

As a reminder, beginning July 15, 2023, please be sure you and your patients send mail to TAF's new headquarters at 8427 Southpark Circle, Suite 100, Orlando, FL 32819. Please don't hesitate to let me know if you have questions. You can always email me at: Christina.Abbene@tafcares.org.