TAF Summer Provider Newsletter

President's Message

Hello Friends,

With the coronavirus disrupting our daily lives, it's been an unprecedented time for our country. At The Assistance Fund (TAF) we know that the thousands of patients who rely on us may be experiencing even more acute challenges and we stand ready to continue serving them.

Despite these challenging times, the TAF team has been tremendously productive, and I am excited to share several updates with you. In April, we launched our COVID-19 Health Insurance Assistance Program, extending financial assistance to our patients who experienced a disruption to their health insurance coverage. We also opened a new financial assistance program for people living with long-chain fatty acid oxidation disorders, bringing us to a total of 70 disease programs.

Earlier this month, we launched are much-anticipated Provider Portal: a one-stop-shop for providers to see up-to-date information on their patients, view TAF’s full list of disease programs and accompanying FDA-approved treatments, and send questions to our helpful TAF team. And in July, we announced our new disease program waitlists, which allow patients to enroll on a first-come, first-served basis when new funding becomes available for a currently closed disease program.

Finally, we've been hard at work to prepare for 2020 reenrollment. This year’s process will be even more streamlined for our patients. Stay tuned for important updates on our website, social media, and the Provider Portal.

This week, TAF released its 10-year Impact Report, which I am very excited to share with you. Reflecting on the past 10 years, I feel a strong sense of pride in how much TAF has grown. None of our accomplishments would have been possible without your steadfast support. On behalf of the TAF team, I sincerely thank you. We are incredibly grateful and look forward to working with you in the next 10 years.

I hope you and your loved ones are in good health.

Sincerely,

Mark McGreevy

President and CEO

Operations Update: COVID-19

As of August 27, nearly 6 million Americans have tested positive for the COVID-19. Our programs and services continue to be fully operational and, in April, we opened our COVID-19 Health Insurance Assistance Program for eligible individuals who have experienced a disruption in their health insurance coverage because of the pandemic.

We know this has been a stressful time for everyone. Our team is closely following CDC and public health guidelines as we transition back to our physical offices.

10-Year Impact Report Highlights Accomplishments, Goals for Future

Our new 10-Year Impact Report features highlights from the past and present, lessons learned, and our goals for the future. TAF's growth and accomplishments would not have been possible without the steadfast support of our donors, health care providers, our incredible team, and of course, the patients we serve. Thank you.

Read the Report

New Provider Portal is Live

TAF’s new Provider Portal reflects our commitment to provide industry-leading technology with streamlined processes for you and our patients. The Portal is a one-stop-shop for you to see up-to-date information on your patients, view TAF’s full list of disease programs and accompanying FDA-approved treatments, and send questions to our helpful Patient Advocates.

Learn more about TAF’s new Provider Portal: h ttps://tafcares.org/providers/aboutproviderportal/.

TAF Launches New Disease Program Waitlists

In July, we launched new disease program waitlists on our website. When new funding becomes available for disease program not currently accepting new patients, TAF’s new disease program waitlists allow patients to enroll on a first-come, first-served basis.

To secure a place on the waitlist, patients must complete an enrollment application and meet program qualifications. When funding is available, TAF will send an invitation to patients on the waitlist. For more information, please read our waitlist Frequently Asked Questions.

Read Waitlist Frequently Asked Questions

Purple Pro: Angelica Feliz, Quality Assurance Specialist

What is your favorite thing about your job?

I love that we all work in collaboration. We all believe in – and dedicate ourselves to – the mission of helping our patients.

What are some of the most common questions you receive?

I am often asked where our funding comes from, if we're a government program, and whether I enjoy working at TAF. I love telling our patients why I love coming to work every day.

Which three words best describe how to be successful at your job?

Dedication, professionalism, and responsibility.

What have you learned while working at TAF?

There are so many things I've learned at TAF. The biggest is that there is no small job in a company; everyone’s role is important.

How are you trying to improve the patient’s experience?

I try to improve patients' experiences by being an active listener, being empathetic, and keeping myself up to date with TAF’s procedures. If I know all the newest disease programs, our patients can be certain they're receiving the correct information and resources.

What's one fact people might not know about you?

I'm a proud mother of three with a bachelor's degree in psychology.

On the (Virtual) Road - Conference Attendance

Over the past few months, the TAF team participated in several virtual conferences, where we’ve connected with patients, providers, and patient advocacy groups.

By attending these events, we gain a better understanding of the challenges patients and their families face, and spread the word about how TAF can help. Meeting patients' evolving needs remains a top focus as we continue to grow and assist more patients each year.

Here is our 2020 conference schedule, which is subject to change. Please check the respective conferences' websites for updates.

EveryLife RDPA RDWCH & NIH Rare Disease Day, 2/25-2/28

MGFA National Conference, 4/5-4/7

CMSC Annual Meeting, 5/27-5/30

ASCO Annual Meeting, 5/29-6/2

BIO, 6/8-6/11

Patient Assistance and Access Programs, 8/3-8/5

Rare Patient Advocacy Summit, Global Genes, 9/21-9/23

NORD, 10/8-10/9

Rare Disease Innovation and Partnering Summit 2020, 12/2-12/4

72nd ASH Annual Meeting and Exposition, 12/5-12/8

Upcoming Disease Awareness Months

August

Psoriasis

September

Blood Cancers

Duchenne

ITP (Thrombocytopenia)

Leukemia and Lymphoma

PBC

Prostate Cancer

Pulmonary Fibrosis

October

Breast Cancer

Gaucher Disease

November

Alpha-1

C. diff

Epilepsy

Gastric (Stomach) Cancer

Lung Cancer

Pulmonary Hypertension

New TAF Values Initiative

Earlier this month, TAF launched a new organization-wide values initiative. TAF's six core values — people, excellence, advocacy, passion, transparency, and innovation — are the fundamental reasons why the TAF team comes to work each day. These values are fundamental to our organizational culture and our commitment to each patient, provider, and donor who make up the TAF family. We look forward to sharing more about our values initiative with you in the future.

Follow TAF on Social Media

The Assistance Fund is on Facebook, Twitter, LinkedIn, and Instagram! Follow TAF today and see which conferences we are attending, get news and updates, and the inspirational messages our patients leave us every day.

Patient Profile: Mike, Idiopathic Pulmonary Fibrosis (IPF)

The hilly backdrop of Fairfield County, Connecticut, provides the ideal retirement scene for Michael Turner, providing proximity to family, friends, and fresh air for car rides.

After operating businesses for much of his career, Mike recently retired with his husband, Ralph, enjoying time outdoors, social engagements, and occasional yard work. But in 2019 when Mike received a diagnosis of Idiopathic Pulmonary Fibrosis (IPF), their peaceful retirement was disrupted. IPF causes scarring of the lung tissue, making physical activity and breathing difficult.

“You have to look forward, not letting any diagnosis stop your life,” Mike said. “For me, it’s about living.”

Stunned by the sticker shock of his copays for treatment — over $10,000 a month — Mike hit the internet to research financial resources that may be able to help.

“Goodness gracious! I’d never be able to afford that,” Mike said. “There’s no way I could pay.”

Mike’s queries brought him to The Assistance Fund’s (TAF’s) Idiopathic Pulmonary Fibrosis Copay Assistance Program, which offers financial assistance to eligible individuals for the cost of copayments.

“My pharmacy said great things about TAF, and I was determined to get my treatment,” he said. “I had a problem and you guys provided a solution.”

A few clicks through TAF’s online application process and document uploader meant Mike’s application went from submission to approval in less than 24 hours. Mike said he never imagined it would be so simple.

“And that was during your busy period — in December!” Mike said.

Mike enrolled in the Idiopathic Pulmonary Fibrosis Copay Assistance Program for 2020, meaning his coverage would last the entire calendar year. At first, 2020 promised to be a great year; Mike would be to walk with Ralph again around his local lake and take scenic drives through upstate New York and Connecticut. The coronavirus pandemic, however, forced Mike to alter his way of life. After consulting his pulmonologist, Mike knew he needed to take extra precautions. But that didn’t stop him from seeing a sliver of hope in otherwise dark times.

“I have to keep my optimism,” Mike said. “I have a yard. It’s the size of a postage stamp, but it’s got a patio, and not everyone has that.”

The pandemic has forced many people living with life-threatening, chronic, and rare diseases to change their routines, and Mike is no different. Outdoor time has been restrained to his patio. Video calls have replaced in-person conversation. This past Mother’s Day, Mike corralled his husband’s extended family across the tri-state area for an online video call with the family matriarch.

“Everyone was very generous with their time,” Mike said. “She was just floating. It made her month.”

Thanks to Mike’s car — a vintage convertible inherited from an uncle — he can safely take in the spring weather he loves so much. Despite the challenges, Mike is determined to maintain his positive attitude and continue living life to the fullest.

“It really can’t be overstated: Without TAF’s help, I would not be receiving the treatment I have,” Mike says. “You and your team make my life happen.”

Christina's Corner

I hope you've had a safe and healthy summer and enjoyed reading our updates. I'm particularly excited about our new Provider Portal. As you begin using the Provider Portal, be sure to read our updated Provider FAQs, which now include common questions about both the Provider Portal and our new disease program waitlists.

We always look for ways to incorporate your feedback and streamline processes for you and your patients. If you have a question that is not answered in our Provider FAQs, please reach out to me.

On a personal note, I'm thrilled to be back at work after my maternity leave. The past few months have been exciting for my family and me as we welcomed my son, Dean. Dean is a delight, sleeping well and always smiling. Thank you for working with my colleagues while I was on maternity leave.

Christina Abbene, Program Manager