President's Message

Hello Friends,

After a difficult 2020 for so many, I hope the new year is off to a great start for you and your families. As our physical offices slowly return to normal, our work continues here at The Assistance Fund (TAF). I'm pleased to share some exciting updates with you.

We recently wrapped up the 2021 reenrollment process and have mailed all acceptance letters. I am pleased to announce that this year, TAF processed nearly 27,000 applications and answered more than 24,000 phone calls. We know that during this busy time it may have taken longer to reach us because of high call volume. We sincerely appreciate your patience. If you have ideas on how we can improve our reenrollment process, we want to hear them. Please reach out to one of our Patient Advocates by using the online chat feature on our website. For more information on TAF Reenrollment, please visit our Reenrollment FAQs.

In other news, we launched our first new disease program of 2021 for people living with primary hyperoxaluria. TAF now offers 74 disease programs for underinsured children and adults living with life-threatening, chronic, and rare diseases.

Finally, I am pleased to share that TAF was ranked number 43 in Forbes 2020 Top 100 Charities. It's a tremendous honor, and a direct result of the steadfast support of our generous donors, our hardworking TAF team, our dedicated healthcare providers, and you, the people we serve. Thank you. 

I hope you and your families have a safe and healthy winter. I look forward to brighter and warmer days ahead. Please enjoy our other news and updates below.

Sincerely,

Mark McGreevy
President and CEO
2021 Reenrollment Concludes

The 2021 Reenrollment cycle is now closed, with Purple Reenrollment ending on November 19, and Teal Reenrollment concluding on December 18. During this reenrollment cycle, TAF approved more than 23,000 individuals for 2021 reenrollment and answered over 24,000 calls—6,000 more calls than last year.

REMINDER: Your 2021 insurance plan information must be on file in order for your claims to be paid. Occasional financial or demographic audits may be conducted, as required by our programs.
Q&A With Willie Macon, Supply Chain Fulfillment Specialist at Lighthouse Works

To enhance your 2021 Reenrollment experience, TAF partnered with an Orlando-based nonprofit organization called Lighthouse Works, whose mission is to create job opportunities for blind and visually impaired people in Central Florida. Known for its excellent customer service, Lighthouse Works has assisted organizations like the Florida Department of Economic Opportunity, Universal Orlando Resort, the Walt Disney Company—and many more. Below is an interview with a Lighthouse Works team member who assisted with TAF's 2021 Reenrollment calls.

What drew you to work at Lighthouse Works?
This is my sixth year at Lighthouse. I struggled finding a job after applying and not getting calls back. One day, my job training instructor mentioned Lighthouse. Within days, I’d applied and received a job offer.

What is it like working at Lighthouse Works?
Lighthouse is more than just a job. They really care about the people they hire.

What has been the best part of working with TAF?
TAF has been a very fun experience. I love when patients tell me how we make their life easier.

What has been the most challenging part of working on TAF's 2021 Reenrollment cycle?
Many of the patients are elderly and don’t know how to use technology. Sometimes, I wish I could do it for them—push the button and make it easier—but I know it’s important that they fill out the application themselves. I know the pandemic has also been very difficult for them.

What kind of feedback have you heard from TAF patients?
So many patients say, "Without The Assistance Fund, I don’t know how I would be able to pay for my treatment myself. I don't have anybody else to help me except TAF.”
Update on TAF's Disease Program Waitlists

In 2020, TAF launched new disease program waitlists on our website. As a reminder to anyone who was on a TAF disease program waitlist in 2020, TAF’s waitlists are administered on a calendar-year basis, consistent with our disease program’s calendar-year coverage periods. At the end of each calendar year, waitlist applications expire, and individuals are required to join waitlists for the subsequent calendar year if they still seek assistance.

For more information, or to learn how to secure your place on a 2021 disease program waitlist, please read our waitlist Frequently Asked Questions: https://tafcares.org/wait-list-faq/.
Celebrating TAF Excellence

This past fall, TAF received a perfect 100/100 rating in Finance & Accountability and Impact & Result from Charity Navigator and ImpactMatters. In January, TAF was once again named by GreatNonprofits as a top-rated nonprofit. And for the first time, TAF was named in Forbes' Top 100 Charities For 2020 list. When we opened our doors in 2009, we had just a few employees and a handful of disease programs. Now we offer over 70 disease programs and have helped nearly 135,000 underinsured people living with life-threatening, chronic, and rare diseases to access their critical treatment. 

Excellenceone of our six core valuesis at the heart of who we are. 
COVID-19 Update

As of February 3, 2021, more than 26 million Americans have been diagnosed with the coronavirus. TAF programs and services continue to be fully operational.

Two vaccines have received FDA Emergency Use Authorizations (EUAs), meaning they have been found to be safe and effective. Please visit your local and state health departments' websites for information on when you are eligibleand where you can receiveyour vaccination.
We're Growing!
In the past year, TAF added several new disease programs to our offerings, bringing our total to 74. Below is a list of the most recent additions:

  • Acromegaly
  • Chronic granulomatous disease
  • COVID-19
  • Cystinosis
  • Long-chain fatty acid oxidation disorders
  • MPS type 1
  • Neurotrophic keratitis
  • Porphyria
  • Pompe disease
  • Primary hyperoxaluria
  • Thyroid eye disease
  • Tumor-induced osteomalacia
  • Urea cycle disorders
Purple Pro: Nicholas Newberry, Patient Advocate

What is your favorite thing about your job?
At the end of every day, I get this great feeling knowing I’ve had an impact on so many lives.

What are some of the most common questions you receive?
Currently, we received a large influx of reenrollment calls. Patients wanted to know how to apply for reenrollment, what their personal identification number (PIN) number is, or how to receive a paper application.

What three words best describe how to be successful at your job?
Ambitious, meticulous, and responsible.

What have you learned while working at TAF?
I have learned a lot about the pharmaceutical claims process, as well as the various acute and chronic diagnoses we support.

How are you trying to improve patients' experience?
I ensure everything is processed fluidly and accurately, and I provide correct information to patients and providers. Anything to create a better experience!

Describe what it’s like to work at TAF.
It feels like a family and there is no doubt TAF cares about its employees as much as its patients. 

Which TAF value do you most identify with and why?
Innovation. I am passionate about improving, efficiency, and effectiveness.
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:

Susan, Primary Biliary Cholangitis
Poet and writer Dorothy Parker once said, “London is satisfied, Paris is resigned, but New York is always hopeful.”

Susan personifies that hope. She is the kind of New Yorker who never takes a sick day. Healthy, active, and a frequent traveler, she enjoys everything she can in New York and overseas. A nurse, Susan often puts in long days and weekend shifts, but she loves caring for patients. When Susan sees a patient in need, she goes out of her way to support and assist them.

“I don’t mind working!” Susan said. “I get to speak with patients and let them know how I can help.”

It never occurred to Susan that one day she may be the patient needing assistance.

In 2004, a doctor discovered she had a liver condition called stage 3 primary biliary cholangitis (PBC), an autoimmune disease that affects the tissues within the liver.

The news was stunning. Susan vowed to face the challenge head-on and began treatment to regulate her liver. She was determined to live a long, full life with her husband and three adult sons.

“I’m in good hands,” Susan said. “Though some days I do find myself asking ‘why me?’”

And for years, Susan maintained her hope and positivity, continuing her work and routines. However, a liver biopsy in 2018 revealed the treatment wasn’t working as hard as she was. A top specialist at New York Presbyterian Hospital recommended a new treatment that—if successful— could add decades to Susan’s life. Without it, her future was far less certain. But the high out-of-pocket costs for the treatment was more than Susan could afford.

“I found out it was almost $8,000 a month. That’s impossible!” Susan said. “How could anybody afford that?”
A contact suggested Susan apply to The Assistance Fund’s (TAF’s) Primary Biliary Cholangitis Financial Assistance Program, which provides assistance for copays, deductibles, premiums, and ground travel costs. When Susan got the news she was approved, she was overwhelmed with relief.

“I’m so lucky. I didn’t have access to the treatment before,” Susan said. “I’m so blessed.”

For months, Susan has been symptom-free.

“I exercise every day. I go to work. I babysit my grandkids. I go out with my husband. I’m very blessed for right now that I have no symptoms of the disease,” Susan said.

Now, Susan looks forward to the holidays and safe gatherings with her immediate family during the pandemic. While Christmas did not include the usual large family gift-exchange, Susan says she already has much to feel grateful for.

“I don’t know what I would be doing right now if I hadn’t been directed to you,” Susan said.
“It’s the difference between life and death.”

The future is bright. With her treatment, and TAF, Susan can look forward to many more years of holiday gatherings and life on Long Island.

“I will be forever grateful! Thank you, TAF,” she said. “TAF has changed my life and my outlook on how long I can be here.”
Would you like to be featured in an upcoming newsletter? If you have received assistance from The Assistance Fund and are willing to share your story, please contact our TAF Communications Manager Mark Meier at Mark.Meier@tafcares.org.
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Paying It Forward

83 cents per day.

That’s all it takes to become a Champion. Join our monthly giving program today to help TAF assist even more people who are managing life-threatening, chronic, and rare diseases. When you commit to 83 cents per day ($25 per month), you will receive a special gift from TAF as a thank you.

Healthy Recipe: Roasted Cauliflower With Lemon Brown Butter

INGREDIENTS
  • ¼ cup olive oil
  • ¼ cup sage leaves, loosely packed
  • 1 tablespoon sea salt, more for tossing
  • 3 medium-large heads cauliflower (about 3 pounds)
  •  About 1 teaspoon table salt
  • 6 tablespoons unsalted butter
  • 1 lemon, zest finely grated
PREPARATION
  1. Heat oil in a small pan until rippling. Add sage and cook, stirring, just until crisped, about two minutes. Lift out sage and drain on paper towels; transfer oil to a large bowl. Let sage cool and crumble with fingers into a small bowl. Stir in coarse salt and set aside.
  2. Heat oven to 375 degrees. Place roasting pan with an inch of water in oven bottom. Add cauliflower to bowl with oil, add about one teaspoon table salt, and toss gently until coated. Spread out on two large baking sheets. Bake until browned, 20 to 30 minutes.
  3. Melt butter in a small pan over medium heat. When foam subsides, watch closely and stir often. When white solids are brown and butter smells toasty, turn off heat, squeeze in juice of lemon and stir well.
  4. Transfer cauliflower to a bowl, pour butter over, and add lemon zest. Add half the sage salt and toss. Taste and season with remaining salt as needed.
(Source: The New York Times)
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ICYMI: TAF Releases White Paper

This past fall, The Assistance Fund (TAF) released a new white paper, “Access to New Cures & Innovative Care for Medicaid Patients: Examining Challenges and Opportunities for Cell and Gene Therapies in Medicaid.” The paper, which was researched and written by Leavitt Partners, provides in-depth analysis of the challenges cell and gene therapy (CGT) present to the Medicaid program’s antiquated coverage and payment policies, as well as potential solutions. Its proposed recommendations to improve access to and sustain Medicaid coverage of CGT are based on a comprehensive landscape assessment and interviews with over 45 expert stakeholders, including patient advocacy groups, state Medicaid directors and experts, healthcare providers, Medicaid health plans, federal policymakers, and manufacturers.
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