Patient Newsletter: Winter 2024
President's Message
 
Hello and Happy belated New Year!

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.

With Reenrollment coming to a close, I'm proud to announce we approved over 20,000 people for continued financial assistance in 2024. 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 indicates whether the people we serve would recommend TAF to a friend, family member, or colleague.

For more than a year, our team has been hard at work putting together a new Patient Portal. Over the next few months, we will be sending out important information with registration instructions for the Portal. TAF’s Patient Portal is a one-stop-shop for you to review your disease program information, submit and monitor reimbursement requests, update contact information, and more. Be on the lookout for emails in the coming months.

Below are additional updates, including news about important reimbursement process enhancements and details of our upcoming patient art contest. I'm eager to see your beautiful artwork!
 
Sincerely,
Danielle Vizcaino
TAF Patient Advocates Featured on CBS Sunday Morning

In case you missed it, two of The Assistance Fund’s (TAF’s) Patient Advocates represented TAF on national television. On Sunday, January 7, CBS Sunday Morning featured Patient Advocates 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.”
Gineris Ortiz and Kayla Zuniga alongside TAF's Senior Director of Communications, Margaret Figley, and journalist David Pogue
Jan Wigington, Senior Director of Operations
Operations Update: Reimbursement Process Enhancements

My name is Jan Wigington and I'm the Senior Director of Operations. Each year, we receive helpful feedback and suggestions about our reimbursement process. Our team is constantly looking for ways to make this important process more streamlined and straightforward. To help answer some of your most frequently asked questions, we released a list of new reimbursement-specific FAQs in December. And this spring we are launching our new Patient Portal. Stay tuned to your email inboxes for important registration information.

Reminder: Due to the high volume of claims we receive during January, February, and March, your reimbursement may be delayed. We apologize for the inconvenience and thank you for your patience.
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. Thank you so much to our TAF family of patients, healthcare providers, staff, and our generous donors who make our work possible.
Third Annual Patient Art Contest Begins in February

Are you an artist who is living with a life-threatening, chronic, or rare disease? The Assistance Fund invites all current TAF patients to submit their artwork to the third annual Kaleidoscope of Life Art Contest for a chance to be featured on select TAF marketing and fundraising collateral. Eligible mediums include paintings, drawings, and collages. Photography and sculpture are ineligible for this contest.

Contest Submission Period: Feb. 1 through Feb. 29, 2024.
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 the people TAF serves are leading. Whether it's volunteering, playing music or pickleball, or participating in Bible study, each story is powerful.
Adrien and Lillian, two TAF patients
Upcoming Disease Awareness Months
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
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
On the Road
Conference Attendance

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
Gerald Lauria, Chief Development Officer, and Mark Meier, Senior Manager of Communications, at the 2023 Healthcare Advocate Summit in New Orleans, LA.
Advocacy Update

In a major win for patients using copay assistance, the U.S. Department of Justice dropped its appeal of a court ruling that sought 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 both with the Biden Administration and by supporting the HELP Copays Act in Congress. If you would like to have your voice heard on these and other issues important to patients, sign up today to receive our grassroots advocacy emails.
We're Growing!

So far, TAF has added two new disease programs this year, bringing our total to 91. TAF now offers financial assistance for people living with:

  • Neurofibromatosis
  • Systemic Sclerosis
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 a patient has 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.
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: 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. 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.”
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.
Philanthropy Update:

Thank you to the many donors who helped TAF exceed our philanthropy goals in 2023. We are grateful for your support throughout the year. Your generous donations ensure that many more people will have access to medical treatment in 2024.

As we continue to expand our reach to partner with individuals, foundations, and companies, we invite you to connect with us to move TAF’s mission forward. Please consider:


Again, we thank you and wish you a prosperous new year.
Winter Recipe: Mini Meatball Soup With Broccoli and Orecchiette

Makes: 4–6 servings
Time: 35 minutes

INGREDIENTS

  • Kosher salt and black pepper
  • 3 tablespoons extra-virgin olive oil
  • 2 medium carrots, coarsely chopped
  • 1 large head broccoli, stalks and branches peeled and coarsely chopped, head cut into small florets
  • 3 garlic cloves, coarsely chopped
  • 2 quarts chicken broth
  • 8 ounces orecchiette
  • 1 pound hot Italian sausage, casings removed
  • Freshly grated Parmesan, for serving

PREPARATION

  1. Bring a medium saucepan of salted water to a boil.
  2. In a large Dutch oven or heavy pot, heat the oil over medium-high. Add the carrots, broccoli stems, and garlic, season with salt and pepper, and cook, stirring occasionally to keep the garlic from scorching, until softened, 3–5 minutes.
  3. Add the chicken broth and bring to a boil, then reduce heat and simmer until the broth is flavorful, 5–7 minutes. Taste and season with salt and pepper as it simmers.
  4. Once the broth begins to simmer, add the pasta to the boiling water and cook until al dente. Drain the pasta and divide it among bowls.
  5. While the pasta cooks and the broth simmers, use a ½ teaspoon measuring spoon to scoop little sausage meatballs and plop them into the broth. (You can also pinch ½-inch pieces of the sausage and roll them between your hands.) Return to a boil, add the broccoli florets, then reduce heat and simmer, stirring gently and occasionally, until the sausage is cooked through and the florets are bright green, 5–7 minutes. Season to taste with salt and pepper. Spoon the soup over the orecchiette. Finish with Parmesan.

(Source: The New York Times)
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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