PRESIDENT'S MESSAGE

 Hello Friends,

It’s been an exciting few months at The Assistance Fund. In case you missed it, we recently released our 2018 Impact Report and I am proud to share the highlights. In 2018, we experienced a 30% increase in donations from 2017, allowing us to provide more support and resources to patients. Since our inception, we have supported more than 78,000 patients – in 2018 alone, we assisted more than 36,000 patients. The breadth of disease states we now cover has increased tremendously; we opened 14 new programs in 2018. Read more in the full report.

In June, we opened a Washington, D.C. office, which is home to members of our
communications, advocacy and philanthropy teams. As you know, Washington is a nonprofit hub, and having a second home there will allow us to develop relationships with like-minded patient advocacy groups and nonprofit organizations. Our Washington presence will also enable us to more effectively advocate on behalf of the patients we serve.

We are also excited to announce that we recently appointed Cleveland Clinic Neurologist Robert Bermel, MD, to the TAF Board of Directors. We are thrilled to have Dr. Bermel on our team. His extensive experience caring for people living with serious illnesses will be a tremendous asset to The Assistance Fund. Read more below about these and other updates, including 2020 Reenrollment.

Have a great fall!
 
Sincerely,

Mark McGreevy
President and CEO
2018 IMPACT REPORT
2018 was a year of great progress for TAF. We provided $151 million in assistance to over 36,000 people and opened 14 new disease programs. We couldn’t have done it without the support of our generous donors. Read more our 2018 Impact Report, which features a few of the many amazing patients and health care providers we work with:  https://bit.ly/2KL4xUo
WE'RE GROWING!
Programs Opened in 2019

  • Acute Myeloid Leukemia
  • Breast Cancer 
  • Chronic Lymphocytic Leukemia 
  • Gout
  • Hypophosphatasia (HPP)
  • Lambert-Eaton Myasthenic Syndrome (LEMS)
  • Lysosomal Acid Lipase Deficiency
  • Neuromyelitis Optica Spectrum Disorder (NMOSD) 
  • Paroxysmal Nocturnal Hemoglobinuria (PNH)
  • Prostate Cancer 
  • Pulmonary Fibrosis
  • Pulmonary Hypertension

View a full listing of all of our 
programs.
WATCH NEW VIDEO FEATURING CAROL, A TAF PATIENT

Sometimes life can take an unexpected turn. When TAF Vice President of Operations Danielle Vizcaino boarded a plane two years ago, she was seated next to a lovely woman living with Parkinson’s Disease.

Danielle and Carol shared a wonderful conversation during the flight and exchanged contact information. Soon after, Carol applied for TAF assistance when she learned she could no longer afford her monthly medication costs.

Watch the story of Carol and Danielle’s reunion.
ON THE ROAD
CONFERENCE ATTENDANCE
Over the past couple of months, the TAF team has participated in a number of conferences across the country, where we’ve been able to connect with providers and patients in person. 

By attending these events, we are able to glean a better understanding of the challenges patients and families face and spread the word about how TAF can support them. Throughout 2019, we continue to connect face-to-face with providers and the people we support.
PURPLE PRO: TEAL ANDERSON
What is your favorite thing about your job?

I enjoy the diversity of TAF staff members. We share cultural traditions with each other. I am able to grow as a person from the experiences.

What are some of the most common questions you receive?
In my role, I process all incoming mail. Leadership wants to be kept abreast of the types of documents we receive and the volume, so they can plan staff accordingly.

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

Accuracy, speed and efficiency.

What have you learned while working at TAF?

I've learned that there are so many rare diseases that most people don't even know about and once they are diagnosed, they don't know where to seek help with their medical expenses.

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

I work efficiently to process each document. This speeds up the determination of support for patients so TAF is able to notify them quickly, relieving some of their stress.

Could you describe what it’s like to work at TAF?

It is fun and exciting, but very busy.

TAF WELCOMES
DR. ROBERT BERMEL TO BOARD OF DIRECTORS

Dr. Robert Bermel, Staff Neurologist and Director of the Neurological Institute's Mellen Center for Multiple Sclerosis at Cleveland Clinic has joined our Board of Directors. Read the press release .
COMING SOON: NEW PROVIDER PORTAL

We continually look for opportunities to streamline our operations and enhance the experience of patients and providers who work with TAF.

We are excited to announce that we will launch a new and improved Provider
Portal in the fourth quarter of 2019. The new Provider Portal’s user-friendly platform will allow providers to submit cases for service, request information on behalf of their patients, and access individual patient’s assistance
information and status. In addition, providers will have access to TAF information and updates in real time.

Ultimately, this new technology will
provide a more efficient and streamlined user experience for both patients
and providers. Stay tuned for details.
OCTOBER AND NOVEMBER DISEASE AWARENESS

October

Breast Cancer
Gaucher Disease
Primary Biliary Cholangitis
Systemic Lupus Erythematosus
Alpha-1 Antitrypsin Deficiency
Clostridium Difficile Associated Diarrhea
Gastric Cancer

November

Neuroendocrine Tumors
Non-Small Cell Lung Cancer
Pulmonary Hypertension
Skin and Skin Structure Infections

2020 REENROLLMENT OPENING SOON

This year, to better serve our patients, we are reenrolling people in two groups, which are organized by disease programs. Patients' 2020 reenrollment dates are dependent on whether they are in the Purple or Teal Reenrollment Groups. Patients may visit www.tafcares.org/reenroll to see whether they belong to Group Purple or Group Teal.

  • Reenrollment Group Purple Dates: Nov. 4 to Nov. 22
  • Reenrollment Group Teal Dates: Dec. 2 to Dec. 20

On Friday, Oct. 18, patients received an email with 2020 Reenrollment directions, including options to reenroll by text, email, online, QR code and paper application. In addition, we will mail postcards to patients with the same directions this week.
PROVIDER Q&A

Donald Owens, Biotech Manager
Orsini Healthcare

Orsini Healthcare:
Caring for Patients Throughout Their Journey   
Orsini Healthcare is a nationwide specialty pharmacy focused on providing exceptional care to patients throughout their journey.

Tell us about yourself and your professional background.

I was born and raised in Grosse Pointe, MI. I studied business administration at Western Michigan University, started my pharmacy career at Walgreens, and taught pharmacy tech classes at the local community college in Northern Illinois. I've been working in the specialty pharmacy area for eight years, all with Orsini Specialty Pharmacy.     

How did you learn about The Assistance Fund?

I first started working with TAF several years ago to help patients with Hereditary Angioedema obtain the additional assistance needed with out-of-pocket expenses

What is your typical day like working with patients?

I get the pleasure of working with patients as they start their journey with Orsini. In most cases, I educate them on what to expect with their first experience with home infusions. We also discuss potential out-of-pocket costs and benefits of having a patient assistance foundation like TAF to help provide support.

Is there anything you would like other providers to know about The Assistance Fund?

TAF is a wonderful organization that is very patient focused. Their staff is always accessible and friendly. They make it easy for a patient to enroll through a wonderful online portal or through one of their helpful staff members over the phone. 

Tell us about challenges patients face paying for their medications and related medical out-of-pocket expenses.

With the rising healthcare costs in general from premiums to out-of-pocket costs, healthcare is becoming less accessible for patients who may not have the means, but suffer a rare disease that can be very costly. TAF plays a huge role in helping patients gain access to medications they desperately need but cannot always afford.

Are there larger trends you’ve noticed in terms of medical costs and patient assistance?

In the past few years we have seen out-of-pocket costs increase up to 200-300%. Without assistance with these costs, many patients would be unable to pay for medications that are vital for their health.

What are your interactions like with individuals who are receiving support from The Assistance Fund?

They are very gracious and thankful. Living with a rare disease can be very stressful and costly. It can be hard to work a full time job due to the effects of their conditions and the constant need to see various medical professionals for their treatment. TAF provides support in several ways to help lift the burden and allow patients to focus on their health and wellness.

Can you share an interaction you’ve had with a patient that stood out to you?

A patient had a benefit design that did not allow for home infusions. Unfortunately for this patient, they had a very serious condition that required a lengthy infusion. The patient would have to take off two days of work for travel and recuperation from the procedure. This took such a huge toll on the patient they had considered discontinuing treatments. With TAF assistance, we were able to cover the costs of nursing and transition the patient to home infusions, allowing them to not miss work and infuse around their schedule. This patient still thanks me for changing their life. It really does refocus your outlook on the work we do and how vital of a role we all play in providing patient care.

What is the best thing about your job?

When I get a call from a patient thanking me for helping their family with the transition to home infusions. They tell me how much easier it is to receive their infusion/injection in the home, and how they no longer have to pack or prepare for a difficult trek to a local infusion center. They appreciate the flexibility to be able to work infusions around their work/school schedule.

Is there anything else you would like to share about your experience interacting with patients?

We are blessed to have the opportunity to play a vital part in our patients' healthcare experiences. When you have a tough day, remember that the little extra you can give will make a huge difference on someone who will be more than gracious for you effort and support.

Would you like to be our next featured provider? Contact Christina Abbene, Program Manager, at christina.abbene@tafcares.org .
PATIENT PROFILE: MICHAEL,
MULTIPLE SCLEROSIS
COPAY PROGRAM
Michael, from Spokane, Washington, is enrolled in our Multiple Sclerosis Copay Program. Multiple Sclerosis (MS), an autoimmune neurodegenerative disorder of the central nervous system, attacks the tissue lining the brain and spinal cord, affecting memory function and mobility. More than 400,000 men and women in the United States have MS; the disease often strikes during their peak years.

DIAGNOSIS

Several years ago, Michael was on a tour of
the local Boeing plant when he lost all feeling
in his legs and collapsed. Young, healthy,
newly married and earning a degree in
aerospace safety from a local community
college, his MS diagnosis came as a complete surprise. Michael quickly learned the complexities of having MS, an autoimmune
neurodegenerative disorder of the central
nervous system.

LIVING WITH MULTIPLE
SCLEROSIS

Michael began a regiment of injections every
other day. Ten months after the start of his
treatment he was bedridden.

He moved from Seattle to Spokane,
Washington to be closer to his family, and to
receive help with his care. Then in 2017,
Michael suffered Trigeminal Neuralgia on the
right side of his face. This condition affects
the trigeminal nerve that carries sensation
from the face to the brain. Simple tasks such
as a person brushing their teeth can trigger a
jolt of excruciating pain.

For treatment, Michael turned to stereotactic
radiosurgery, known as the Gamma Knife, a
procedure that uses computer imaging to
direct highly focused beams of radiation
where the trigeminal nerve exits the brain
stem. This causes the slow formation of a lesion on the nerve, disrupting the transmission of sensory signals to the brain stem. This causes the slow formation of a lesion on the nerve, disrupting the transmission of sensory signals to the brain.
HOW TAF HAS HELPED

Medical expenses, as well as the stress of
managing a chronic condition, piled up.
Michael applied to the Multiple Sclerosis
Copay Program for assistance and was
accepted soon after.

Now, thanks to support from TAF, Michael
lives a healthy lifestyle and remains upbeat
about the future despite the daily challenges
of managing his condition.

"The copays for my medication are $1,600
month. If it weren’t for The Assistance Fund,
I wouldn’t be able to get my medication.
Thank you from the bottom of my heart.”

ADVICE TO OTHERS

"I would say never give up. I try to stay
positive. I exercise at the YMCA and work
with my physical therapists. You need to
stay busy and try not to think about your
illness ."
CHRISTINA'S CORNER

It’s been a busy past few months at The Assistance Fund. We opened more programs, welcomed talented new staff members, and opened a new office in Washington, D.C. I am especially excited about the new provider portal, which is scheduled to go live in Q4. The portal will allow you to quickly access your patients' up-to-date information.

Reenrollment for 2020 will begin soon. As you know, TAF budgets for a full year's worth of coverage for each patient. This means you do not need to check on funding available for your patients throughout the calendar year once they are accepted in the program.

As a reminder, pharmacies cannot use a discount program/copay card in place of insurance. Patients must have current insurance coverage and meet TAF criteria to be eligible to receive assistance.

The Medical Advisory Board met this summer to discuss the latest approved medications for specific illnesses, as well as current disease state news. The board looks forward to another year of medical breakthroughs that will help your patients. Have a great fall, and please do not hesitate to contact me with questions or concerns at Christina.Abbene@tafcares.org .

Christina Abbene, Program Manager
4700 Millenia Blvd., Suite 410
Orlando, FL 32839