THE ASSISTANCE

THE ASSISTANCE FUND NEWSLETTER

FUND NEWSLETTER | WINTER EDITION
| WINTER 2018 | PAGE
EDITION 20181

TAF DONOR
PRESIDENT’S MESSAGE:
CONNECT
GROWING OUR IMPACT
In 2017, we experienced a lot of growth and change. We made significant progress in
helping as many patients as possible afford the medicines they need and improving
the experience of patients in their interactions with our programs.

Last year, we added four new disease area funds, aided 43,000 patients and saw
38 percent growth in donations. We provided a total of $164 million in direct
Mark P. McGreevy
President support to patients, helping them pay for their copays, coinsurance, premiums and
incidental medical expenses.

CONTINUED ON PAGE 2

TAF CELEBRATED 2017 Facts & TAF IS ON FACEBOOK AND LINKEDIN

GIVING TUESDAY
AND PURPLE PRIDE
“We are always touched by
the generosity of our donors.
Thank you to everyone who
donated.” – Brian Payne.
READ THE FULL STORY ON PAGE 3
Figures
• Helped 42,993 patients
• Received 195,000 calls
• Processed an average of
53,000 claims per quarter
• Processed an average of
13,000 documents per
quarter
The Assistance Fund’s Facebook page keeps our patients and
other followers in the loop on upcoming events, fundraisers and
news that affect our community. Find information on important
topics like program enrollment and new fund openings, and
helpful tips from our team. Visit Facebook.com/AssistanceFund.
We also share updates on our LinkedIn page – search “The
Assistance Fund.”

New Funds
for 2017
and 2018
The Assistance Fund is
expanding! TAF manages more
than 30 disease funds, and
added four new funds in 2017:
Gaucher Disease, Hunter
Syndrome, MPS VII – Sly
Syndrome and Myasthenia
Gravis. Already in 2018 we
have opened two new funds –
Atypical Hemolytic-Uremic
Syndrome and Inherited
Retinal Diseases.
Our funds help patients and
families facing high medical
out-of-pocket costs by
providing financial assistance
for copayments, coinsurance,
deductibles and other health-
related expenses.
THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 2
CONTINUED FROM PAGE 1
PRESIDENT’S MESSAGE: GROWING OUR IMPACT
NUMBER OF PATIENTS ASSISTED IN 2017 BY STATE
This growth in our impact was powered by growth in three areas: Leadership, Technology and
Service Expansion.
• LEADERSHIP: As we’ve noted previously, we added several key senior leaders in 2017 who will help
lead our organization into the future. Steve Alsene, our CFO, has already contributed significantly
to improving our donation management operations, expediting the journey of money from our
donors to patients. Danielle Vizcaino, our VP of operations, has been making changes in technology,
operations and policies that help us better serve patients. We’ve also expanded our Board of
Directors with the addition of Julie Judge, an HR leader who has held executive roles with Maxim
Healthcare Services, Erickson Living, Cleveland Clinic and CitiGroup.
• TECHNOLOGY: This year we implemented several new systems to improve efficiency, assuring
a faster and more seamless process for patients and sites of care to submit for and access our
funds. Our in-house technology has migrated to a single world-class platform, which allows
our staff to quickly access accurate patient records to more efficiently meet patient needs. We
also implemented a new document upload system on our website, allowing patients to submit
documents electronically to support reimbursement. We launched a new telephony system,
which allows patients a host of self-service options and a “virtual hold” callback system.
• SERVICE EXPANSION: We’re also excited to announce the hiring of Christina Abbene as program
manager, who is responsible for connecting directly with specialty pharmacies and sites of care
to ensure efficient and timely access to TAF funds. Most of our patients receive reimbursements
directly through sites of care, making the process of enrolling in one of our funds straightforward
and seamless. We welcome Christina to the TAF family.
TAF wouldn’t be here without the generosity of our donors, and we’re proud to report that the
number of donors to our funds continued to grow in 2017.
Personally, 2017 was an inspiring year to work at TAF, most notably when the team’s responsibilities
extended beyond the office. At the US Hereditary Angioedema Association patient summit, as well
as other summits, TAF staff were able to meet with patients and their families in person. Nothing is
more rewarding than hearing from and meeting with the people who benefit from TAF’s work. Seeing
their courage and the tremendous love from their families and caregivers – it’s why I get up in the
morning.
I wish you all the best in 2018 as we move toward an even brighter year for TAF and everyone
we’re privileged to serve.
Warmly,
Mark McGreevy, President
 THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 3

“ I love working at
TAF. Every day
I come to work
and I get to
work alongside
one of the most
dedicated and
hardworking TAF CELEBRATES GIVING TUESDAY
teams ever. On Giving Tuesday, The Assistance Fund hosted a very special interactive event on its Facebook page
focused on sharing information about TAF and the patients we help, and celebrating what we at TAF
That’s how I call “Purple Pride.” The day also honored the great work of TAF’s patient advocates.

think about “Giving Tuesday was a wonderful opportunity to engage and connect with the broader TAF commu-
nity on social media, and to hear their stories,” said Brian Payne, director of development at TAF.
Purple Pride.” Throughout the day, TAF shared patient stories about the impact TAF has had on their lives.
– Dianja Williams, TAF’s patient advocates also had a chance to share what Purple Pride means to them.
TAF patient advocate
“I love working at TAF. Every day I come to work and I get to work alongside one of the most
dedicated and hardworking teams ever. That’s how I think about Purple Pride,” said Dianja Williams,
a patient advocate.

Giving Tuesday is a global day of giving fueled by the power of social media. In the US, it is celebrated
on the Tuesday following Thanksgiving, following “Black Friday” and “Cyber Monday,” to kick off the
charitable season. This year, TAF increased its Giving Tuesday donations by 114% from 2016.

“We are always touched by the generosity of our donors. Thank you to everyone who donated,”
said Payne.

Q&A: PURPLE PROS

Jodine Lee-Logan has been a patient advocate
for TAF since 2015.
What is your favorite thing about the job?
I really enjoy reaching out to our newly enrolled patients to
advise them of the funding that has been secured for them.
Quite a few patients didn’t even know that TAF existed, and they
express a lot of gratitude.

Has anything surprised you about working at TAF?

I am always surprised at the beginning of the year when we’re
informed of how many patients we assisted the year before. The
number is always growing!

What is an encouraging thing you often share with patients?

I encourage patients to keep fighting, and keep calling us.
We’re often opening new funds and growing our funds, and we
have dedicated employees who are working hard to secure more
donations. So keep calling back!
 THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 4

Patient Profile
TAF is proud to have What does it mean to you to receive
help from TAF?
provided financial
It’s a godsend to me because I’ve seen a
assistance to 43,000 difference using the medication. I don’t fall,
patients in need I don’t stumble and I have better quality of
life being on the drug. I wouldn’t be able to be
in 2017, and we’re on it without TAF’s assistance. I consider it a
inspired by stories of blessing! I can’t even express my gratitude for
strength and courage in it. We couldn’t do it, financially, without TAF’s
assistance.
the face of disease. For
Are there any tips you’d like to share
this edition, we spoke with other patients?
to Sherrilyn, a woman MS takes away a lot of the abilities of people.
living in Troy, Michigan, How did you learn that you had MS? Lots of the things I used to be able to do
I can’t do anymore, so it’s important to find
who was diagnosed I thought I might have had a stroke because I
was dragging my leg, and I was having trouble other ways to express myself and spend my
with multiple sclerosis walking. At first I thought that I injured my back time. Now I express my creativity by making
(MS) in 1999. from yardwork, but it wasn’t getting any better. greeting cards, and I really enjoy that. I’m
I went in for testing, and they found out I working on my Christmas cards now.
had MS.

How did you pay for your medication

before you began receiving assistance from
TAF? How did you learn about TAF?
I had been paying for my medication through
my husband’s insurance at work. When that
changed and it became a catastrophic health
insurance policy, I was able to get assistance
directly from the pharmaceutical company.
After some time, the company was no longer
able to provide assistance to me, and they
referred me on to TAF. They submitted my
information to TAF, and TAF contacted me.

“My advice is – reach out! Express your needs if you’re

having trouble. It never hurts to ask. We’re all used to
hearing the word ‘no’ and we might not want to hear
it but, you know what? You might hear a yes.”
 THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 5

On the Road
MEETING PATIENTS AND THEIR CAREGIVERS IN 2017
In 2017, TAF leaders and patient advocates headed to six
destinations across the country to connect with patients, TAF CONFERENCE ATTENDANCE, 2017
providers and advocates at conferences led by patient advocacy
groups and other nonprofit organizations. These gatherings are an
opportunity to share information and build community among
patients and their families. TAF’s team met face-to-face with
patients and shared information about TAF services. Here are
some highlights:

When the US Hereditary Angioedema Association (HAEA) held

their National Patient Summit in Bloomington, MN in September,
TAF met with patients and answered questions about our
financial assistance programs.

“We’re always excited to engage face-to-face with patients

we’ve been helping, to hear their stories and to meet family
APRIL 2017 JUNE 2017 SEPT 2017
and friends,” said Brian Payne, director of development at TAF. American Academy Parent Project Hereditary
“In addition to connecting with patients, the HAEA conference of Neurology, Muscular Dystrophy Angioedema Summit,
and others like it provide a valuable arena for us to spread the Boston, MA (PPMD) Connect Bloomington, MN
word about our work. With a deeper understanding of patients’ Conference,
MAY 2017 Chicago, IL NOV 2017
experiences and needs, we can tailor our services and help even Consortium of National Multiple
more people who are struggling to cover their out-of-pocket Multiple Sclerosis Planet Philanthropy, Sclerosis Society
medical expenses.” Centers Annual Tampa, FL Impact at Sea World,
Meeting, Orlando, FL
At the National Multiple Sclerosis Society “Impact Series New Orleans, LA
2017: Whatever it Takes” meeting in Orlando, FL this November,
attendees met with TAF patient advocates. It was a welcome

Upcoming Conference
opportunity to hear from patients, answer questions and put
faces to the names of patients with whom TAF has engaged over
the phone or online.
MARCH 2018
“When patients see us on the road at these gatherings, we 19th Annual Patient Assistance and Access Programs,
become a more visible part of their community of resources,” Baltimore, MD
said Gerald Lauria, vice president of business development
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“We’re always excited to engage

face-to-face with patients we’ve
been helping, to hear their stories
and to meet family and friends.”
– Brian Payne, director of development at TAF

Continually Improving
THE PATIENT AND PROVIDER EXPERIENCE
Throughout 2017 we continued to work hard to improve the
experience for our patients and providers, ushering in several
new systems.
A new online document system allows patients to submit
enrollment and claims documents online, allowing for rapid
processing so that patients have more immediate access to funds.
Additionally, we launched our new telephony system, including
an automated self-help menu for patients that is available 24/7.
Patients can check their enrollment and re-enrollment status,
as well as claims status and activity. In the last quarter of 2017
alone, we received over 4,300 calls to our self-help menu outside
of office hours and 83% of those calls were from patients. Callers
who need to speak to a patient advocate are also encouraged to
Operational DOCUMENT
MANAGEMENT
excellence at Document upload
TAF –
functionality for patients
continuous
and pharmacies processes
application documents more
improvement quickly and shortens time for
patient reimbursement.
in 2017
COMING IN 2018
DocuSign technology
allows easy signing of patient
enrollment materials and
other documentation, and
shortens the time a patient
is pending full approval.
COMING IN 2018
Text messaging reminders
and notifications keep
patients proactively
informed about document
processing and important
announcements/deadlines.
THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 6
use our online chat functionality. We engaged in almost 33,000
chat sessions in 2017, with an average response time of 30
seconds. We also managed more than 195,000 calls in 2017.
It’s not just patients who benefit from our new online document
system and telephony system. Providers make regular use of
these new systems as well. With the telephony system’s self-
help menu, providers can check enrollment status and claims
information in real time, so they can be confident that a patient’s
claim will be covered.
It’s an exciting time at TAF as we focus on delivering more
services and improving efficiencies for both patients and providers.
Watch this space as we continue to roll out several new services
and features in 2018!
TELEPHONY
SYSTEM
Real-time program financial
dashboards allow up-to-
Automated self-help menu
date understanding of fund
volumes, commitments, and
provides status on enrollment, cash balances.
re-enrollment, reimbursement
and claims.
“Virtual hold” option for
WEBSITE
callbacks from patient
Redesigned website
advocates improves call
features a streamlined patient-
convenience.
centric navigation and new
COMING IN 2018 and improved content.
After call surveys secure
Online program status
caller feedback for continuous
alerts visitors in real-time as
improvement.
funds open for new patient
enrollments.
FINANCIAL Online enrollment allows
MANAGEMENT
for immediate eligibility
Advanced analytical tools determination and speed to
provide dynamic, integrated therapy.
visibility into real-time
Online chat functionality
patient and program level
provides a virtual channel
information.
for patients and providers
Patient level financial to connect with patient
allocation models allow for advocates.
greater visibility into run-
rates against fund budgets
to maximize the number of
patients served.
 THE ASSISTANCE FUND NEWSLETTER | WINTER EDITION 2018 | PAGE 7

TAF attends the US Hereditary Angioedema Association National Patient

Summit and the National Multiple Sclerosis Society’s “Impact Series 2017:
Whatever it Takes” meeting.

CONTINUED FROM PAGE 5

and strategic initiatives at The Assistance Fund. “The Multiple

Sclerosis conference was focused on family and the community
that surrounds the patient. That helps us extend our services.
We’re able to have a dialogue with not just a patient or potential
patient, but also their family members who often travel with
them and, in some cases, assist them through the TAF enrollment
process.”

At the HAEA summit, attendees participated in technical events

like meetings with immunologists to learn about the latest
discoveries and advances in treating hereditary angioedema
(HAE). Patients met with one another, too, finding commonality
and socializing with those experiencing the same struggles and
undergoing the same treatments.

“For many, conferences like these create a wonderful ‘family’

of individuals across the country who face similar obstacles,”
Lauria said. “We’ve heard from many patients that they look
forward to seeing each other at the conferences each year,
reuniting and motivating themselves to continue the fight
against their disease.”

See TAF’s patient resources page

at tafcares.org/patients/patient-
resources for a list of organizations
offering in-person and virtual
support.

4700 Millenia Blvd., Suite 410 WANT TO REACH US BY PHONE?

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Friday at (855) 845-3663,
tafcares.org
9am - 6pm EST, excluding holidays.
Our fax number is (866) 254-9411.