PRESIDENT'S MESSAGE
Hello Friends,
It’s hard to believe that springtime is here and we are more than a quarter of the way through 2020. It has been an eventful time at The Assistance Fund, and I am excited to share updates with you.
First and foremost, the coronavirus (COVID-19) pandemic has affected nearly every part of our daily lives. As you may know, we have created a
webpage
, as detailed below, with operational information and updates. We appreciate your patience during this challenging time.
In other news, I am pleased to announce that we were able to provide assistance to over 50,000 people living with life-threatening, chronic, and rare diseases in 2019. That brings the number of people we have helped in the past 10 years to
over 100,000. And our reach is growing even more in 2020. In the past few months, we have opened seven new disease programs, bringing our total offering to nearly 70 different dise
ase programs.
We also had the great honor of receiving top ratings from three additional charity-ranking websites: GreatNonprofits.org, GuideStar, and ImpactMatters.org. In addition,
The Nonprofit Times,
a leading publication in the nonprofit sector, listed The Assistance Fund in its 2019 Top 100 Nonprofits list.
Finally, we are excited to have wrapped up our 2020 reenrollment period. This year, to better serve our patients, we implemented several enhancements to our reenrollment process, including reenrolling people in two groups organized by disease programs, creating an online reenrollment portal, and introducing a dedicated reenrollment phone number. I am proud to say that we were able to reenroll 94% of patients in 2020. Still, we always strive to improve, so please let us know if you have additional ideas on how we can make the reenrollment process as smooth as possible.
I hope you enjoy reading our additional updates below.
Sincerely,
Mark McGreevy
President and CEO
|
|
|
|
CORONAVIRUS UPDATE
At The Assistance Fund, the health of the patients we serve and of our employees is our number one priority. As we continue to monitor the coronavirus (COVID-19) pandemic, we are diligently working to ensure TAF can operate at the highest possible capacity during this national emergency. At the same time, we are focused on adhering to guidance from the Centers for Disease Control and Prevention (CDC). TAF staff are currently teleworking, and programs and services are currently operational.
To keep you and our patients up-to-date with the latest updates, we've created a
webpage
with resources and FAQs.
We will continue to monitor the coronavirus pandemic and will provide updates here and on our social media accounts. Stay tuned for more news at the end of the month. In the meantime, please contact us with questions at (855) 845-3663.
|
|
|
|
WE'RE GROWING!
Disease Programs Opened in 2020
- Chronic granulomatous disease
- Cystinosis
- MPS Type 1
- Pompe disease
- Porphyria
- Thyroid eye disease
- Urea cycle disorders
View
a full listing of all of our
programs.
|
|
TAF IS ON INSTAGRAM
The Assistance Fund is on Instagram! Follow @TheAssistanceFund today and see which conferences we are attending, along with the inspirational messages our patients leave us every day.
|
|
|
|
ON THE ROAD
CONFERENCE ATTENDANCE
|
|
Over the past few months, the TAF team participated in several conferences across the country, where we’ve enjoyed connecting with patients and providers in person.
By attending these events, we are able to gain a better understanding of the challenges patients and their families face, and spread the word about how TAF can help. Below is our 2020 conference schedule, which is subject to change. Please check the website for each conference for updates.
|
|
|
|
TAF JOINS IN CELEBRATING RARE DISEASE WEEK
Rare Disease Week 2020 was a success! All week, the TAF team (and their purple tote bags) were hard to miss around Washington, D.C. Afterwards, we hosted a reception for patients and advocates in our new D.C. office. We are grateful for the time with so many friends and partners here in Washington, D.C. See a few of our favorite photos below.
|
|
|
|
PURPLE PRO: CYNTHIA LOPEZ
|
What is your favorite thing about your job?
My favorite part about working at TAF is being able to help others. It's so great to know that I can make the difference in someone's life.
What are some of the most common questions you receive?
Patients often ask whether they will be notified when a disease program opens and whether there are waiting lists for programs that aren't currently open. It's my job to be prepared and knowledgeable about each fund in order to help each unique patient.
Which three words best describe how to be successful at your job?
Team player, reliable, adaptable.
What have you learned while working at TAF?
I've learned that every day I can make a difference in the life of someone I've never met. By doing my best, I can help so many in need by getting them the medications and treatment that they depend on to survive.
How are you trying to improve the patient’s experience?
As a Patient Advocate, I try to show empathy with each person I speak with. If I can go the extra mile to help a patient, I will.
What's one fact people might not know about you?
I absolutely love the beach and watching the sunrise!
|
|
|
|
THIS SUMMER: 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 pleased to announce the arrival of our new Provider Portal. Testing on the portal has begun, with the launch scheduled for June 2020. 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.
With this new technology, we hope to provide a more efficient and streamlined user experience for both patients and providers. Stay tuned for details.
|
|
UPCOMING DISEASE AWARENESS MONTHS
April
Fabry Disease
Oral, Head, and Neck Cancer
Parkinson's Disease
Primary Immunodeficiency
May
Asthma
Bladder Cancer
Cystic Fibrosis
Hepatitis
Melanoma
Myositis
Spondylitis
June
Acute Myeloid Leukemia
Myasthenia Gravis
July
Graves’ Disease (Thyroid Eye Disease)
Juvenile Arthritis
Parathyroid
|
2020 REENROLLMENT RECAP
This year, we reenrolled patients in two groups which were organized by disease program. The purple group was able to reenroll in November, while teal was able to reenroll in December. We introduced a new online reenrollment portal, which meant fewer individuals needed to send in paper applications and more applications arrived on time. We reduced the waiting period for enrollment notices for most of our patients.
By The Numbers:
94%
Percentage of patients who applied and were reenrolled for 2020.
50,000+
Number of patients served in 2019.
|
|
|
|
WELCOME JUDITH FOX, SENIOR DIRECTOR OF COMPLIANCE
We are excited to announce a new addition to The Assistance Fund's senior leadership team. Senior Director of Compliance Judith Fox, comes to TAF after serving over 25 years in the health care field as a
Compliance Officer for a number of integrated health care systems, where she designed and implemented compliance programs and worked closely with government regulatory agencies. Judith has extensive experience with regulatory matters involving the Anti-Kickback Statute and False Claims Act.
She is certified in health care compliance and a long-standing member of the Florida Bar, the Health Care Compliance Association and the American Health Lawyers Association.
“I was drawn to TAF as an organization that is known for its values and commitment to providing financial assistance to underinsured patients,” Judith said. “Now that I’m here, I am so excited to be part of a team with such generous donors and caring providers."
|
|
|
|
PROVIDER
Q&A
Leslie Turner, Patient Service Coordinator
EVERSANA
EVERSANA:
Eversana is an independent provider of global services to the life science industry.
Fueled by a vision to advance life science services toward a healthier world, we put equal weight on how we partner with our clients to improve the lives of patients. How we operate is grounded in our cultural beliefs – shared by more than 2,700 employees around the world.
Tells us a little about yourself and professional background?
I started in 1999 working with Alpha-1 patients. My goal is to make sure patients are treated professionally, and it is my responsibility that their care always comes first.
How did you learn about The Assistance Fund (TAF)?
In working with patients, I discovered there was another foundation that could assist our Alpha-1 families.
What is your typical day like working with patients?
My day consists of phone calls and emails with patients, ensuring all their needs are met, no matter what it takes.
What has been your experience working with TAF?
I have been working with TAF for just over one year, and I’ve found it to be a very rewarding experience. I’ve developed a close relationship with the TAF team, and especially Christina [Abbene]. She has been an asset to my needs, making sure communication is always open and professional.
Is there any thing you would like other providers to know about TAF?
Providers should know that TAF is another avenue for assistance with patients and their needs.
What are the challenges you see patients are facing when paying for their medication and related medical out-of-pocket expenses?
The greatest challenge I see each day is financial. Most patients I work with simply do not have the income or funds to support their medical needs. We need to do all we can to ensure patients receive the medications they need, and stay on them.
Tell us a story about a patient who you have assisted in applying for funding?
I had one individual who had lost her spouse, and she came to me in tears needing my assistance. I was able to get her the help she needed by conferencing in one of TAF’s representatives. With that phone call, we were able to support her needs, and it really brought a smile to my face as well as her. We were able to know we helped her during a challenging time. It was very rewarding.
Are there any larger trends you have noticed with medical costs and patient assistance?
The cost of the “donut hole” for Medicare patients.
What are your interactions like with patients who are receiving support from TAF?
Overall it’s very positive. The patients really appreciate that we’re able to help them in their time of need, and they are often overwhelmed with gratitude.
What is the best thing about your job?
The best part of my job is being able to reach out to my Alpha-1 families and to let them know that I am always here to help them, no matter what.
Would you like to be our next featured provider? Contact Mark Meier, Communications Manager, at M
ark.Meier@tafcares.org
.
|
|
|
|
PATIENT PROFILE:
MARY, HERIDITARY ANGIOEDEMA
|
Most mornings for Mary began the same way: she would wake up and begin the ritual of inspecting her hands and feet to determine which part of her would be immobile that day.
“Some days it would be, ‘I can’t use both of my hands,’” Mary says. “If I couldn’t use my hands, I would drive with my elbows. I got used to walking on my knees.”
Mary has lived with hereditary angioedema (HAE), a rare and sometimes life-threatening genetic condition, most of her life. HAE causes roving swelling in various parts of the body, including hands, feet, face and airway.
“HAE is a surprise disability, where there are days you go to bed not knowing how—or if—you’ll wake up in the morning,” Mary said.
Mary’s disease meant planning her life around a shorter-than-average life expectancy. She says she didn’t expect to live beyond 35.
“I would think every day about what I’d done with my life,” Mary says. “I didn’t put money in a retirement account because I didn’t expect to live that long.”
Mary built her life around her symptoms. People living with HAE often experience swelling in their skin, hands and feet, and a general tiredness and fatigue. For Mary, a self-described “active woman,” this was especially challenging. She was a frequent runner and enjoyed playing guitar in her free time. If she wanted to play guitar for 20 minutes one night, she’d have to plan on not being able to use her left hand the next day.
“There were days when everything was swollen, and I would be in bed for four or five days,” Mary says.
Years of clinical trials and waitlists meant Mary’s health and wellness were continually in flux. A new treatment significantly reduced Mary’s symptoms but she couldn’t afford it. Mary considered crowdsource fundraising but knew she couldn’t raise two weeks’ worth of the funds required for her treatment, let alone a full year.
|
|
“It’s not just providing treatment to people for comfort, it’s quality of life and longevity of life,” Mary says. “Without TAF, I couldn’t afford it.”
Now Mary spends her free time running on her treadmill, playing guitar and piano, and performing at open mic nights in downtown Portland. As an active mom, she can be there for her 10-year-old daughter and family without stress or worry. Mary says that some days, she forgets she has HAE at all.
“I feel like I’ve hit the lottery,” Mary says. “I can never say thank you enough. There truly aren’t any words to just give the gift of a ‘normal’ life.”
|
CHRISTINA'S CORNER
It’s been a busy past few months at The Assistance Fund. We've opened seven new disease programs, continued our staff growth, and filled out our new satellite office in Washington, D.C. I am especially excited about the new Provider Portal, which is scheduled to go live in June. Streamlining the patient and provider experience is a continuing priority.
The Medical Advisory Board met this winter to discuss research and treatment coverage, the latest approved medications for specific illnesses, and current disease state news. The board looks forward to another great year of medical breakthroughs that will help your patients.
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 availability 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.
Have a wonderful and healthy spring. I will be out on maternity leave mid-April through July. For operational questions, please contact Jan Wigington, Director of Operations, at
Jan.Wigington@tafcares.org
. For questions related to this newsletter, please contact Mark Meier, Communications Manager,
Mark.Meier@tafcares.org
.
Christina Abbene, Program Manager
|
|
|
|
HEADQUARTERS:
4700 Millenia Blvd., Suite 410
Orlando, FL 32839
|
|
Washington, D.C. Office
655 15th St. NW, Suite 502
Washington, DC 20005
|
|
|
|
|
|
|
