Summer 2023 Newsletter - The Assistance Fund

Patient Newsletter: Summer 2023

President's Message

Hello there,

I hope you are all having a wonderful start to summer. 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.

First, some details about me: I have an MBA, an MPH, and a BS in Molecular Biology and Microbiology—in my previous life, I was a scientist. 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 our providers and most importantly you—the patients we serve. 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.

Though the patient assistance landscape has evolved over the years, I'm confident TAF will continue to evolve with it. I look forward to building on TAF's incredible work in my new role and am committed to ensuring you have access to the vital treatments you need. Please enjoy the rest of our news and updates below.

Sincerely,

Danielle Vizcaino

Congratulations to the Winners of TAF's Second Annual Kaleidoscope of Life Art Contest

Thank you to everyone who participated in our second annual Kaleidoscope of Life Art Contest. We received more than 150 submissions, more than twice as many as last year. A panel of TAF staff had the tough job of picking just five winners! Each of the winners below received a TAF swag bag valued at $50. Stay tuned next year for another chance to submit your art.

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

Judith N., Nontuberculous Mycobacterial Lung Disease Financial Assistance Program

Dallas D., Multiple Sclerosis Copay Assistance Program

Jan Wigington, Director of Operations

Operations Update: New TAF Headquarters

My name is Jan Wigington. I'm TAF's Director of Operations, and I'd like to share some important news with you. Beginning July 15, 2023, TAF will be moving to a new Orlando office location. While we will have mail forwarding services, for the most timely and efficient service it is important that you mail paper applications and reimbursement requests to our new address. Our new address will be:

8427 Southpark Circle, Suite 100, Orlando, FL 32819

We look forward to continuing to serve you from our new headquarters.

Read Stories About People Like You

At TAF, we know living with a life-threatening, chronic, or rare disease can be physically and emotionally difficult. You are not alone. Every month, we share the stories of people from around the country in our Medium patient stories blog. These inspiring stories highlight the vibrant lives TAF patients are leading. Whether it's volunteering, playing music or pickleball, or participating in Bible study, each story is powerful.

Follow Our Patient Stories Blog

Susan, a TAF Patient

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

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

On the Road

Conference Attendance

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.

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

The Assistance Fund 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. Thank you to the over 620 TAF Advocates who reached out to your member of Congress to ask them to support the bill.

Make Your Voice Heard

Important Information for Patients on Medicaid

If you are on Medicaid/CHIP, it is important to enroll this year with your state Medicaid agency. Annual Medicaid enrollment is beginning again this year. To learn more, visit https://www.healthcare.gov/.

Please note: you must have health insurance coverage to continue receiving assistance from a TAF disease program.

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

We're Growing!

So far, TAF has added four new disease programs this spring, bringing our total to 85. TAF now offers financial assistance for people living with:

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

Click Here To View a Full Listing of TAF's Programs

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.

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.

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."

Would you like to be featured in an upcoming newsletter? If you have received assistance from TAF and are willing to share your story, please contact Mark Meier, Senior Manager of Communications, at Mark.Meier@tafcares.org.

TAF Philanthropy Team Joins Thousands of Fundraising Professionals at AFP Icon

Every year, the Association of Fundraising Professionals (AFP) holds the largest gathering of fundraising professionals in the world—AFP ICON. AFP conferences and events offer the opportunity to learn, network, engage, share ideas, and connect with fundraisers from across the globe. The world’s top fundraising conference returned to the “Big Easy” this year, bringing three full days of learning, connecting, and inspiration. There were more than 100 educational sessions, including sessions on legacy giving and peer-to-peer fundraising. With over 3,600 attendees, it was great to network and hear best practices on ways we can ensure our disease programs help more people living with life-threatening, chronic, and rare diseases.

Donate Today

Healthy Recipe: Pan-seared Fish With Citrus Pesto

Makes: 4 servings

Time: 30 minutes

INGREDIENTS

Pesto

½ cup toasted pistachios or slivered almonds
2 teaspoons drained and rinsed capers
Kosher salt (such as Diamond Crystal)
2 cups mint or basil leaves (or a combination)
1 tablespoon lemon, tangerine, or grapefruit zest plus 3 tablespoons juice
⅓ cup extra-virgin olive oil, plus more as needed

Fish

4 (6-ounce) fish fillets, such as arctic char, striped bass, or salmon, skin on or off
Salt
Extra-virgin olive oil, for greasing

PREPARATION

Pesto

Add the pistachios, capers, and one teaspoon of salt to a food processor and process until coarsely chopped.
Add the herbs, citrus juice, and a pinch of salt and pulse until the herbs are finely chopped and the nuts are about the size of sesame seeds.
Add the olive oil and pulse just until combined.
Stir in one teaspoon of citrus zest.
Taste, then continue to add more zest and salt until the pesto is citrusy and punchy.
Thin with 2 to 3 more tablespoons of olive oil until it’s the consistency of a loose paste.
Taste, and adjust seasonings as needed. (To use the pesto on pasta, see tip.)

Fish

Season it all over with salt and oil.
Working in batches if necessary, add the fish (skin-side down, if your fillets are skin-on) to a large (12-inch) nonstick skillet, then heat over medium.
Cook until the flesh is opaque ¾ of the way up the sides, 6 to 12 minutes, depending on the thickness of the fish. If the fish is buckling, press it down with a spatula so it makes contact with the skillet.
Flip and cook until cooked through, 1 to 2 minutes.
Transfer to plates, skin-side up if serving skin-on fish, and eat with a spoonful of pesto.

TIP

To make pesto pasta, skip the additional 2 to 3 tablespoons oil and toss the thick pesto with cooked pasta and a little pasta cooking water. Leftovers keep for up to 3 days.

(Source: The New York Times)