Provider Newsletter: Winter 2023

Jan Wigington, Director of Operations Operations Team Tips: 2023 Reenrollment Concludes My name is Jan Wigington, and I'm TAF's Director of Operations. Our 2023 Reenrollment cycle has now concluded and TAF has sent all acceptance letters. If you have questions about your patients' enrollment status, please visit our Provider Portal or use our new chatbot, Violet, which can be found on our website. We were proud, thanks to our generous donors, to approve approximately 90% of Reenrollment applications this cycle. Our Operations team strives to provide patients with a user-friendly and efficient Reenrollment process. Here are a few other notable statistics from this year's Reenrollment: 27,866 Reenrollment applications received. 27,037 contacts handled between The Assistance Fund (TAF) and our partners at Lighthouse Works (including online chats). 5,113 online chats handled by Violet, TAF's new chatbot, enabling TAF to handle more calls and improve overall service levels. Reminder: March 31 is the deadline for submitting all 2022 claims. To learn more, visit TAF's Provider Resource Hub. And TAF requires healthcare, pharmacy, and reimbursement services providers to accurately identify themselves when applying on behalf of patients. Referrals with inaccurate information may cause application processing to be delayed.

Forbes Names TAF One of America's Top 100 Charities The Assistance Fund was once again recognized by Forbes as one of America's Top 100 Charities. TAF also holds a perfect rating from Charity Navigator, a Platinum Seal of Transparency from Candid/GuideStar, and is a 2023 GreatNonprofits Top-rated Nonprofit.

We're Growing! So far, TAF has added two new disease programs in 2023, bringing our total to 81. In January, we launched programs for people living with: Acid Sphingomyelinase Deficiency Hepatocellular Carcinoma

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. The Assistance Fund 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 Partners With EveryLife Foundation To Strengthen Rare Disease Advocacy TAF partners with organizations that share our commitment to improving patients’ access to critical treatment, including the EveryLife Foundation for Rare Diseases. As a proud 2023 sponsor of EveryLife’s Rare Giving Program, we affirm our commitment to elevating patients' voices by supporting this program that helps individual patients and organizations that engage in advocacy and public policy. Additionally, we look forward to meeting patient advocates at EveryLife’s Rare Disease Week on Capitol Hill (February 28 – March 2).

Learn About the Rare Giving Program Learn About Rare Disease Week 2023

Advanced Research Project Agency for Health Officially Established At the end of 2022, Congress fully authorized the Advanced Research Projects Agency for Health (ARPA-H), officially establishing the new agency. Thank you, TAF advocates, for sending 655 messages last year urging Congress to authorize and fund ARPA-H with rare disease patients in mind. Our advocacy team will continue to work diligently to ensure patients' voices are prioritized by ARPA-H.   ARPA-H is a new agency created to accelerate scientific breakthroughs that prevent, detect, and treat diseases. TAF supported the creation of the new agency, which may transform the rare disease landscape. To learn more about ARPA-H, visit https://arpa-h.gov/.

Purple Pro: Tempra Pope, Comptroller What is your favorite part about your job? I enjoy working alongside my colleagues. Each one brings their authentic self and corresponding talents to the table with such motivation. I show up every day to share the journey. You’ve worked at TAF for 10 years. What have you learned?   TAF has taught me to live a life of substance. After 10 years, my heart for assistance and giving has grown exponentially. You may not remember my every word or action, but I hope you will remember how it made you feel. What three words best describe how to be successful at your job? Commitment, learning, and teamwork. How are you trying to improve patients’ experience?                                                                            I improve patients’ experience by treating my colleagues well through active listening, following up on commitments, and showing gratitude. Describe what it’s like to work at TAF. The workforce is diverse. The doors are open to questions and suggestions. And the minute you sign on, TAF is invested in you. What is one fun fact about you? I collect figurines of powerful women! Which TAF value do you most identify with and why? People. People are the heartbeat of every organization. When an organization’s mindset focuses on people, everything changes: productivity, morale, teamwork, and impact.

Conference Attendance On the Road In 2023, TAF will attend a wide range of conferences. Here's where we're headed next:  Fabry Support and Information Group Expert Fabry Conference, Orlando, FL (February 25–27) EveryLife Foundation for Rare Diseases' Rare Disease Week on Capitol Hill, Washington, DC (February 28 – March 2) Patient Assistance & Access Programs 2023 Conference, Philadelphia, PA (March 20–22) 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 acted like they cared about me as a human being." — Darlene, Idiopathic Pulmonary Fibrosis Copay Assistance Program “TAF's process was a piece of cake. I probably couldn't survive without TAF.” — Gary, Alpha-1 Antitrypsin Deficiency Financial Assistance Program “The whole organization is wonderful. This could have never happened without their help.” — Carol, Primary Biliary Cholangitis Financial Assistance Program

Follow Our Patient Stories Blog

Patient Profile: Gayle, Breast Cancer Copay Assistance Program Service has been Gayle’s life’s work. It is what drove her to serve as a health educator for the American Medical Association and to volunteer with the Peace Corps. “I worked for two years in Togo in a little mountain village,” Gayle said. “I enjoyed it very much.” It was in Togo when Gayle reconnected with her former boyfriend, Neil. The pair originally met studying abroad together in Europe, where they had romantic dates in the streets of Paris and the peaks of Switzerland. Gayle said Neil stood out among the other guys in her academic program. “He told me I stood out, too, because I took notes,” Gayle said. “And I had the lightest luggage!” That trip was the start of their 45-year journey together. Though Neil passed away in 2014 from complications related to Parkinson’s disease, Gayle treasures their many years and adventures together. “It was just romantic and fun,” she said. “He was so different.” At the end of 2017, Gayle faced her own health challenges when she was diagnosed with stage-four breast cancer. It was the third time she’d battled the disease, which runs in her family.  “Because I was at stage four, the doctor said I better get my ducks in order because the potential for living longer than a year was not great,” Gayle said. On top of the terrifying news, Gayle faced high out-of-pocket costs for the treatment she needed. “It's around $12,000 for the first treatment, and then each month was $607, too,” Gayle said. “I was thinking I would be homeless.”  Gayle’s doctors referred her to The Assistance Fund’s (TAF’s) Breast Cancer Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for breast cancer, such as copays, deductibles, and coinsurance. In minutes, her application was approved. “The Assistance Fund came through,” she said. “It was very simple. I got my little card and my letter.” Most importantly, the treatment has been effective. For four years, Gayle’s cancer has been under control. “My doctor says I’m doing better than half of the other patients,” Gayle said. “It helps to know that I can continue my treatment, which has been remarkable.” Gayle now spends her time with family in Evanston, Illinois. Her oldest daughter, Laura, and three grandchildren also live in the Chicagoland area. Without the financial burden of paying for treatment, Gayle said she is focused on doing what she can to help her grandkids afford college.  “TAF’s financial assistance relieves a tremendous amount of stress,” she said.

Upcoming Disease Awareness Months February: American Heart Month National Cancer Prevention Month Rare Disease Week (February 28 – March 2) Rheumatoid Awareness Day – February 2 World Cancer Day – February 4 International Epilepsy Day – February 13 National Donor Day – February 14 Rare Disease Day – February 28 March: Amyloidosis Awareness Month Bleeding Disorders Awareness Month Multiple Sclerosis Awareness Month Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness Month International Women's Day – March 8 World Kidney Day – March 9 Certified Nurses Day – March 19 National Doctors' Day – March 30 April: Fabry Disease Awareness Month National Minority Health Month Oral, Head, and Neck Cancer Awareness Month Parkinson's Disease Awareness Month Primary immunodeficiency Awareness Month Porphyria Awareness Week (April 1–8) World Health Day – April 7 World Parkinson's Day – April 11 World Sarcoidosis Day – April 13 International Pompe Day – April 15 World Hemophilia Day – April 17 ‌ TAF staff wearing red for World Duchenne Awareness Day. February is Black History Month It’s Black History Month, and TAF offers disease programs for several disease states that disproportionately impact Black people: Ankylosing Spondylitis Copay Assistance Program Breast Cancer Copay Assistance Program Gastric Cancer Copay Assistance Program Lupus Copay Assistance Program Prostate Cancer Copay Assistance Program Pulmonary Hypertension Copay Assistance Program Renal Cell Carcinoma Copay Assistance Program Sarcoidosis Copay Assistance Program According to the American Cancer Society, Black people are more likely to be diagnosed with gastric or kidney cancer, and younger Black people are more likely to receive a breast or prostate cancer diagnosis. And according to Mayo Clinic, women and Black people are more likely to be diagnosed with lupus and sarcoidosis.

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 and your families are doing well. We're off to another busy start to the year, opening two new programs for people living with acid sphingomyelinase deficiency and hepatocellular carcinoma. These new programs will help hundreds of people access the critical treatment they need. I'd like to introduce you to the newest member of our team, Francia Rodriguez, TAF's Provider Relations Specialist. Francia is responsible for monitoring our Provider Portal to troubleshoot cases and educate our provider community on TAF's processes. She joins TAF with 15 years of healthcare experience with a large hospital system in Central Florida. Please don't hesitate to let me know if you have questions about our provider resources. You can always email me at: Christina.Abbene@tafcares.org. Christina Abbene, Senior Manager, Operational Quality and Program Management

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