President's Message

Hello Friends,
 
It's hard to believe another year has come and gone. And what a year it was! 2020 was difficult for all of us, but I know the challenges have been felt most acutely by our patients and you, the healthcare providers on the frontlines. With the start of this new year, I am deeply grateful for your continued commitment to our patients.

Despite the challenges, The Assistance Fund (TAF) accomplished so much in 2020. We launched a dozen new disease programs, including a critical COVID-19 Health Insurance Assistance Program, we launched an enhanced Provider Portal that is now being used by 800 health care providers, we implemented new disease program waitlists, and we published a 10-Year Impact Report, and our first white paper.

Spring is around the corner, and I want to inform you of two important updates. Reenrollment for 2021 is now complete, and over 23,000 reenrolled patients have peace of mind this year. I'm proud to report that TAF approved 86% of our reenrollment applications for 2021. Finally, I am pleased to announce that TAF has been ranked number 43 in Forbes' Top 100 Charities For 2020 list. This tremendous honor is the direct result of the steadfast support of our generous donors, our hardworking TAF team, and you, our dedicated healthcare provider community. Thank you.

I hope you enjoy reading our additional news articles below. Thank you again for all you do to extend access to treatment for people living with life-threatening, chronic, and rare diseases.

Mark McGreevy
President and CEO
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.

To enhance our patients' reenrollment experience, this year we 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 team, Lighthouse Works has assisted organizations like the Florida Department of Economic Opportunity, Universal Orlando Resort, the Walt Disney Company—and many more.

For more information on TAF Reenrollment, please visit our Reenrollment FAQs.
COVID-19 Update

As of February 11, more than 27 million Americans have been diagnosed with coronavirus. At TAF, the health of the patients we serve and of our employees continues to be our number one priority. We hope you and your families are staying safe as we begin the new year. TAF programs and services continue to be fully operational.
Reminder: Disease Program Waitlists

In 2020, TAF launched new disease program waitlists on our website. As a reminder to anyone who has referred a patient to join a TAF disease program waitlist, 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 patients are required to join waitlists for the subsequent calendar year if they are still seeking assistance.

For more information, please read our waitlist Frequently Asked Questions: https://tafcares.org/wait-list-faq/
TAF Excellence Recognized With Two Top Awards

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. 

Excellence—one of our six core values—is at the heart of who we are. 
We're Growing!

Recently opened disease programs:

  • Acromegaly
  • Chronic granulomatous disease
  • COVID-19
  • Cystinosis
  • MPS type 1
  • Neurotrophic keratitis
  • Pompe disease
  • Porphyria
  • Primary hyperoxaluria
  • Thyroid eye disease
  • Tumor-induced osteomalacia
  • Urea cycle disorders

View a full listing of all of our 
programs.
ICYMI: TAF Releases New White Paper


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.
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?
We received a large influx of reenrollment calls. Patients wanted to know how to apply for reenrollment, what their personal identification number (PIN) number was, 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.
Upcoming Disease Awareness Months

February

Cancer Prevention
Heart Month

March

Amyloidosis
Bleeding Disorders
MS

April

Fabry Disease
Oral, Head, and Neck Cancer
Parkinson’s Disease
Primary Immunodeficiency
Spondyloarthritis
Porphyria
Meet Helen, a TAF Patient
When Helen retired to Tucson, AZ, she was looking forward to the dry air and warm weather, two conditions that make her pulmonary hypertension (PH) more manageable. PH is a condition of the lungs and heart that causes shortness of breath, dizziness, and for Helen, embolic hypertension clotting disorder, which causes blood clots.

“I’ve got a great pulmonologist here in Tucson,” she said. “He’s monitored and kept an eye on both my hypertension and PH.”

Helen’s pulmonologist prescribed an effective treatment that ensured her blood could flow freely; however, the cost was an issue. From 2013 until 2018, Helen was able to access her treatment with the assistance of different charities and manufacturer assistance programs. But when the assistance ended in winter 2018, the two were left to figure out how she would be able to continue treatment.

“I was down to a week’s worth of pills…my doctor was beside himself trying to get me this medication,” Helen said.

Helen’s pulmonologist delivered the difficult news: she would likely have to abandon her treatment for a different, less effective treatment. That’s when Helen got word that The Assistance Fund (TAF) had an open disease program.

“I got on right away; it was so pleasant,” Helen said. “Thank God I got connected to TAF.”

Within minutes of applying, she was conditionally approved for TAF’s Pulmonary Hypertension Copay Assistance Program. Just a few days later, she was accepted and approved for the program through the end of the year. Now, Helen and her doctor could make sure she received the most effective treatment for her condition.

“The form was so easy; I was so happy,” she said. “I couldn’t believe how great your organization is.”
Upon learning about TAF’s streamlined reenrollment process for the next calendar year, Helen felt a sense of relief.

“When you have to go through so many forms and paperwork just to get in, then start worrying about the next year halfway through, it’s not easy,” Helen said. “TAF’s Patient Advocates made reenrolling so efficient!”

Helen had hoped to entertain company this summer, but the pandemic put a halt to those plans. COVID-19 restrictions meant her son and grandchildren couldn’t travel outside of Maryland. Instead of visitors, she relies on video chats for major events like seeing her oldest grandson before he departs for college.

“I’m thankful that I’m healthy and able to go on walks,” Helen said. “I think of all of those in healthcare who work so hard.”

In previous years, Helen had begun worrying as early as July about what would happen if she wasn’t accepted for another year of assistance. The stress of having to search for assistance all over again prevented her from living a full life. This year is different.

“With TAF, I feel safe,” Helen said.
Christina's Corner

I hope you and your families had a safe and healthy holiday season. It was a busy end of the year at TAF. We opened four new disease programs, which brings us to a remarkable total of 74. More importantly, this means greater access to critical treatment for thousands of new patients.

I'm thrilled to see so many of you using our Provider Portal to see the most up-to-date information on your patients, view our current list of disease programs and accompanying FDA-approved treatments, and to send questions to our helpful TAF team.

As noted above, if your patients enrolled in a TAF disease program waitlist last year, they will need to reapply for 2021. Please don't hesitate to reach out to me with questions.

Finally, thank you for your feedback and kind words about working with The Assistance Fund! We strive to ensure you have a positive and streamlined experience with us and love to hear from you.

How has TAF made it easier for you to provide access to treatment for your patients? What can we do to improve? Send me your thoughts at Christina.Abbene@tafcares.org.

Christina Abbene, Program Manager
HEADQUARTERS:
4700 Millenia Blvd., Suite 410
Orlando, FL 32839
Washington, D.C. Office
655 15th St. NW, Suite 502
Washington, DC 20005