THE ASSISTANCE FUND NEWSLETTER | SPRING EDITION 2019 | PAGE 1

PRESIDENT’S MESSAGE

Dear Friends,

It seems like we just rang in the new year and now we’re well into spring. I’m proud of all that The Assistance Fund accomplished in 2018 and, this year, I look forward to even more progress. Since the beginning of the year, we launched eight new programs: Breast Cancer, Chronic Lymphocytic Leukemia, Hypophosphatasia (HPP), Lambert-Eaton Myasthenic Syndrome (LEMS), Lysosomal Acid Lipase Deficiency, Paroxysmal Nocturnal Hemoglobinuria, Prostate Cancer and Pulmonary Hypertension – and it’s only April!

The reenrollment period was a busy time for the TAF team. Each year, we aim to reenroll as many patients as we can. This year, we had more applicants for reenroll-ment across more programs than ever before. In January, we fielded over 14,000 calls and responded to over 6,000 online chats. To make the reenrollment process as smooth and efficient as possible, we worked hard to make decisions quickly.

CONTENTSPresident’s Message 1

Reenrollment Highlights 3

Operational Updates 3

Patient Profile 4

Purple Pros 4

Spring Into Spring 5

Inside Our Community 6

On The Road 6

TAF CARES

THE ASSISTANCE FUND NEWSLETTER | SPRING EDITION 2019

Mark P. McGreevy President and CEO

CONTINUED ON PAGE 2

WOULD YOU LIKE TO SHARE YOUR STORY?

We are always on the lookout for stories from the people we help and would love to learn about your experiences with TAF. If you think you might want to share your story, please contact Judith Pariseau at Judith.Pariseau@tafcares.org.

FOLLOW US ON SOCIAL MEDIA! Follow us on Facebook and Twitter! You’ll find information on important topics like new program openings and operational updates from our team. We also share news about disease awareness observances and health tips. Visit Facebook.com/AssistanceFund and Twitter.com/AssistanceFund

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However, before confirming reenrollment, we must ensure we have enough funds from donor commitments to support an entire year’s worth of your financial needs. We know this was a period of uncertainty for many of you, and we sincerely appreciate your patience. I’m happy to report that we reenrolled 94 percent of total applicants, with 100 percent reenrollment in 27 programs, including Multiple Sclerosis and Parkinson’s Disease. For Multiple Sclerosis, that’s the third year we’ve been able to reenroll everyone who applied for ongoing coverage. We’re extremely grateful to our donors for the support that allows us to do this.

At TAF, we are always working with patients and providers to improve the interactions they have with our team. On January 1, we changed our third-party administrator, allowing us to process claims faster and respond to issues more quickly. The change will also reduce costs, allowing us to allocate more money to direct patient assistance. Please note that the reimbursement submission process for out-of-pocket medical expenses has not changed. You can learn more about these improvements, and others, on page 3.

This year TAF turns 10! Since 2009, we’ve grown to a team of 26 Patient Advocates, opened over 50 programs and helped provide assistance to thousands of individuals. We love receiving your letters and seeing your posts of gratitude on our social media channels; we are delighted to know that our work is making a meaningful impact. On page 4, you will hear from Julie, who is enrolled in our Multiple Sclerosis program. You’ll also hear more about how we are celebrating our anniversary later this year. I am truly excited for what the next 10 years will bring.

Sincerely,

Mark McGreevy President and CEO

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PRESIDENT’S MESSAGE

PROGRAMS LAUNCHED IN 2019

1. Breast Cancer

2. Chronic Lymphocytic Leukemia

3. Hypophosphatasia (HPP)

4. Lambert-Eaton

Myasthenic Syndrome

(LEMS)

5. Lysosomal Acid Lipase

Deficiency

6. Paroxysmal Nocturnal

Hemoglobinuria

7. Prostate Cancer

8. Pulmonary Hypertension

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Reenrollment Highlights2019 reenrollment was open from mid-October through mid-November, and reenrollment decisions were made by January 21.

We offer reenrollment so that people who have previously been enrolled in a TAF program can still have access to our assistance and services. We know that during this busy time it may have been difficult to get through to us due to very high call volume. We sincerely appreciate your patience.

We feel very fortunate to be able to continue to help those facing high medical out-of-pocket costs with financial assistance for their copayments, coinsurance, deductibles and other health-related expenses for another year.

If you have ideas on how to improve the process, we would love to hear them. Please reach out to one of our Patient Advocates by using the online chat feature on our website.

OVER 50 TOTAL PROGRAMS

AND NINE NEW PROGRAMS ADDED

IN 2019

94% OF PATIENTS WHO

APPLIED WERE REENROLLED FOR

2019

~22k PEOPLE REENROLLED

IN 2019

TOTAL PATIENT ADVOCATES

26

At the end of 2018 and into this year, the TAF team made a number of updates to improve the services we provide to individuals enrolled in our programs. Our website now features a Member Number Lookup Tool, which your health care provider can use to access important information about your coverage, such as 2019 program status, coverage dates and billing information. This will help ensure your claims are processed as quickly as possible.

Finally, to help with our continued growth, we’ve added a number of new Patient Advocates over the past couple of months. We’d like to extend a warm welcome to these wonderful new additions to our team. We are excited to have them on board!

OPERATIONAL UPDATES

THE ASSISTANCE FUND NEWSLETTER | SPRING EDITION 2019 | PAGE 4

Julie was diagnosed with MS in 1983. Because Julie has family members living with the disease, she was able to recognize the symptoms, such as numbness and trouble with depth perception. She was diagnosed by a local neurologist.

When she was first diagnosed, Julie and her husband were both insured through their employers but eventually had to enroll in Medicare. Julie first heard about The Assistance Fund in 2009 and reached out when she realized the significant financial burden associated with her medication.

“There is no way I would have been able to afford it without the assistance,” Julie says.

The first time Julie called TAF, she was encouraged by the warm and friendly voice on the other end of the line who, she says, treated her “like a person and not just a number.”

“She made me feel so good and helped me fill out the application,” Julie says. “She also gave me a number to call her back to find out when it was accepted.”

Almost 10 years later, Julie reports that every time she calls TAF, she still has the same experience.

These days, Julie is able to live independently and do things herself, something she attributes to her medication and the right attitude.

“I can still walk, I can still do things,” Julie says. “I was able to go out this morning and shovel my driveway.”

For other people living with MS, Julie offers this advice: “Don’t be afraid of MS. It can be ugly, but I really believe that attitude has a lot to do with it.”

Learn about Julie, who is enrolled in our Multiple Sclerosis program.

Patient Profile“Don’t be afraid of MS. It can be ugly, but I really believe that attitude has a lot to do with it.”

What is your favorite thing about your job?

I appreciate the opportunity to impact lives in a positive way by providing excellent service to patients in need.

What are some of the most common questions you receive from patients?

The most common question I receive is about what services are available to patients.

As a Patient Advocate, how are you trying to improve the patient experience?

By being compassionate, understanding and smiling through the phone. I always try approaching each call differently to give that one-on-one experience.

What have you learned while working at TAF?

There is a tremendous need for financial assistance.

How would you describe your colleagues at TAF?

My colleagues are great. We all have the same goal in mind and that’s to provide wonderful service to each patient we speak with.

Patient Advocate Jessica shares why she enjoys working at TAF.

Q&A: PURPLE PROS

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THE FLU ISN’T JUST A WINTER ILLNESS According to the Centers for Disease Control and Prevention, flu season peaks in December and February but can last through May.1 One of the easiest ways to help prevent illness is to wash your hands and disinfect commonly touched items. Clean objects and surfaces with a disinfecting wipe or soap and water. It’s also important to make sure you are getting enough sleep. According to the Office of Disease Prevention and Health Promotion, getting enough sleep can reduce how often you get sick, your stress levels and your chances of developing a serious health problem.2 For those living with an already compromised immune system, getting a good night’s sleep is even more important.

WASH IT RIGHT: remember to wash your hands with soap and water for at least 20 seconds.3

HOW TO TIDY UP FOR SPRINGPacking up the holiday decorations and putting away your sweaters sounds easy, but is actually a time-consuming and physically involved task. People living with illnesses and conditions that impact motor function or dexterity can find these tasks difficult. If spring-cleaning feels daunting, try cleaning one room at a time

instead of taking on the whole house at once. If you’re putting away large items or cleaning out a big space, tackle one section at a time and remember to take a break. When sorting through items, make sure they’re at a height that is easily accessible and comfortable. If you prefer sitting over standing, have the items on the floor or on top of a table so you can sit in a chair. And don’t feel like you have to do all your cleaning on your own – family and friends are there to help!

SPRING BREAK PLANNINGIf you have young children or teenagers, chances are they have a spring break from school. Figuring out activities for your kids during this time can be difficult if you aren’t feeling up for the activities they want to do. Try thinking of activities that are realistic and fun for everyone. Develop a list or a plan with your children ahead of their days off. Traveling four hours may not be feasible, but a two-hour trip might be possible – find a place and meet in the middle. Comingup with these ideas in advance can reduce stress and give you enough time to prepare.

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Spring into Spring:

REFERENCES1. “The Flu Season.” Centers for Disease

Control and Prevention. Retrieved from: https://www.cdc.gov/flu/about/season/flu-season.htm.

2. “Get Enough Sleep.” Office of Disease Prevention and Health Promotion. Retrieved from: https://healthfinder.gov/HealthTopics/Category/everyday-healthy-living/mental-health-and-relationship/get-enough-sleep#the-basics_2.

3. “Hand-washing: Do’s and don’ts.” Mayo Clinic. Retrieved from: https://www.mayoclinic.org/healthy-life-style/adult-health/in-depth/hand-washing/art-20046253.

Across the country the temperature is warming up. With the snow melting, greenery growing and flowers peeping up from the ground, we welcome a number of other seasonal changes. As we head into spring there are new activities and events to partake in as well as the desire to be outdoors. However, there are a couple of important things to keep in mind as spring comes into full swing.

WASH YOUR HANDS WITH SOAP & WATER

FOR 20 SECONDS

DIVIDE UP YOUR SPRING-CLEANING

TASKS

PLAN YOUR SPRING BREAK ACTIVITIES

IN ADVANCE

HOW TO PREPARE FOR THE CHANGE IN SEASONS

4700 Millenia Blvd., Suite 410

Orlando, Florida 32839

TAFcares.org

WANT TO REACH US BY PHONE?

We’re available Monday through Friday (855) 845-3663, 9am - 6pm ET, excluding holidays.

Our fax number is (833) 865-3757.

At TAF, we help people living with serious, rare and chronic conditions through both our programs and our actions. Over the past couple of months, we participated in disease awareness activities, such as wearing red for American Heart Month and wearing blue on Rare Disease Day.

To help with the winter blues, we kept the mood bright by hosting a number of fun and tasty events. On Wednesday, March 20, we held a potluck and encouraged everyone at TAF to bring a dish. We had everything from antipasto salad to tortiere. February 27 was retro day. We spent the day bringing some of our favorite styles back from the past! We also had the opportunity to celebrate some holidays together, like Valentine’s Day and St. Patrick’s Day.

We know how hard our Patient Advocates work. It’s important to us to create a supportive and enjoyable work environment. This helps our team stay upbeat and motivated so they continue to provide the best service possible.

MARCH20th Annual Patient Assistance & Access Programs Conference (Baltimore, MD)

Myasthenia Gravis Foundation of America National Conference (Atlanta, GA)

APRILAsembia 2019 Specialty Pharmacy Summit (Las Vegas, NV)

MAY2019 Consortium of Multiple Sclerosis Centers Annual Meeting (Seattle, WA)

JUNEImmune Deficiency Foundation Annual Conference (Washington, D.C.)

28th Annual Alpha-1 Education Conference (Orlando, FL)

Parent Project Muscular Dystrophy 2019 Annual Conference (Orlando, FL)

American Society of Clinical Oncology Annual Meeting (Chicago, IL)

JULYUS Hereditary Angioedema Association National Patient Summit (Atlanta, GA)

CONFERENCES

On The RoadOver the past couple of months, TAF has participated in a number of conferences across the country where we’ve been able to connect with patients and providers in person.

At the end of 2018, we traveled to the Global Genes RARE Patient Advocacy Summit, the National Hemophilia Foundation’s 70th Bleeding Disorders Conference and CureDuchenne Futures, among other events. Participating in these events helps us to better understand the challenges patients and families face and gives us the opportunity to spread the word about TAF. Throughout 2019, we look forward to continuing to connect face-to-face with the people we support. If you’re attending any of these conferences, please stop by and say hello!

2019 CONFERENCE ATTENDANCE

Inside OurCommunity

February 27 was retro day. Check out some of our outfits!

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