PRESIDENT’S MESSAGE Dear Friends, I’m writing this from the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, where researchers, patient advocates, pharmaceutical company leaders and others are talking about the latest discoveries in cancer. The promise of new, innovative cancer treatments is truly remarkable; however, the costs of these therapies and the out-of-pocket costs to patients can be great. This reinforces the importance of our mission at The Assistance Fund (TAF) and fuels our passion to continue to grow to help more people afford the therapies they need. ASCO is just our latest stop in a series of important meetings. In April, a small group of us attended Asembia’s Annual Specialty Pharmacy Summit in Las Vegas. It was our first time exhibiting there and it was a wonderful opportunity to connect with WHAT’S YOUR STORY? Please share your story with us! We would love to hear how TAF has had an impact on your life. Your stories are important to us and can help us reach more patients and let them know that they are not alone. If you think you might want to share your experiences with TAF, please contact Judith Pariseau at: [email protected]TAF CARES THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 CELEBRATING A BIRTHDAY? Have you considered running a Facebook birthday fundraiser and donating the proceeds to TAF? Facebook now allows you to ask your Facebook friends to donate to a charity of your choice in recognition of your birthday. Directing your Facebook birthday fundraiser to TAF allows us to help patients and families who have been diagnosed with specific serious and chronic diseases by providing financial assistance for their copayments, coinsurance, deductibles and other health-related expenses. To create a birthday fundraiser with donations for TAF, simply search for fundraisers on Facebook. The page will take you through the steps to set up a fundraiser on Facebook and when you select a charity to donate to search for “The Assistance Fund.” Mark P. McGreevy President and CEO CONTINUED ON PAGE 2 TAF IS ON FACEBOOK Follow us on Facebook and if you’re already following us, please share our page with your family and friends! Our followers have access to information on important topics like program enrollment and new fund openings, and helpful tips from our team. Stay in the loop on upcoming events, fundraisers and other health news. Visit Facebook. com/AssistanceFund.
Transcript
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 1
PRESIDENT’S MESSAGE
Dear Friends,
I’m writing this from the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, where researchers, patient advocates, pharmaceutical company leaders and others are talking about the latest discoveries in cancer. The promise of new, innovative cancer treatments is truly remarkable; however, the costs of these therapies and the out-of-pocket costs to patients can be great. This reinforces the importance of our mission at The Assistance Fund (TAF) and fuels our passion to continue to grow to help more people afford the therapies they need.
ASCO is just our latest stop in a series of important meetings. In April, a small group of us attended Asembia’s Annual Specialty Pharmacy Summit in Las Vegas. It was our first time exhibiting there and it was a wonderful opportunity to connect with
WHAT’S YOUR STORY? Please share your story with us! We would love to hear how TAF has had an impact on your life. Your stories are important to us and can help us reach more patients and let them know that they are not alone.
If you think you might want to share your experiences with TAF, please contact Judith Pariseau at: [email protected]
TAF CARES
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018
CELEBRATING A BIRTHDAY?Have you considered running a Facebook birthday fundraiser and donating the proceeds to TAF? Facebook now allows you to ask your Facebook friends to donate to a charity of your choice in recognition of your birthday.
Directing your Facebook birthday fundraiser to TAF allows us to help patients and families who have been diagnosed with specific serious and chronic diseases by providing financial assistance for their copayments, coinsurance, deductibles and other health-related expenses.
To create a birthday fundraiser with donations for TAF, simply search for fundraisers on Facebook. The page will take you through the steps to set up a fundraiser on Facebook and when you select a charity to donate to search for “The Assistance Fund.”
Mark P. McGreevy President and CEO
CONTINUED ON PAGE 2
TAF IS ON FACEBOOK Follow us on Facebook and if you’re already following us, please share our page with your family and friends! Our followers have access to information on important topics like program enrollment and new fund openings, and helpful tips from our team. Stay in the loop on upcoming events, fundraisers and other health news. Visit Facebook.com/AssistanceFund.
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 2
providers from all over the country and to help spread the word about the vital work we are doing to support patients. You can read more about the summit on page 7.
In May, we also had the privilege of attending the CureDuchenne Regional Family Summit in Houston, TX. We were exposed to the realities of living with Duchenne muscular dystrophy from candid conversations with both parents and children, which were truly inspiring. Hearing their stories reignited our passion for supporting them and helping to improve their quality of life.
I’m also proud to say that we are continuing to grow. So far in 2018, we’ve had the privilege of adding three new disease funds: Atypical Hemolytic-Uremic Syndrome, Inherited Retinal Diseases and Hypophosphatemia. We hope to continue expanding our offerings as the year progresses. These funds help individuals pay for their copays, coinsurance, premiums and incidental medical expenses.
I’d also like to extend a warm welcome to two new members of the TAF team who are already helping us achieve our mission. Judith, TAF’s new Communications Manager, and Bruce, our Director of Operations, joined us in April. I’m excited to have them on board as we continually improve our efforts to help patients with financial needs. We asked them a few questions about their backgrounds, their reasons for joining TAF and their roles at our organization. Turn to page 3 to learn more about the newest members of our team.
As we move into July, I hope that the entire TAF family, whether you are a patient, caregiver, provider or patient advocate, has a pleasant summer.
Kind regards,
Mark McGreevy President and CEO
CONTINUED FROM PAGE 1
PRESIDENT’S MESSAGE
Legacy Giving A PLANNED GIFTYou can leave a legacy and
make a lasting impact by
including TAF in your estate.
We accept the following types
of planned gifts:
1. Wills and bequests
2. Charitable gift annuities
3. Charitable remainder
annuity trusts
If you are interested in learning
more about our planned
giving program, please visit
taflegacy.org to find resources
and informational packets
about planned giving.
It’s more than halfway through 2018, and here at TAF we’re still hard at work fulfilling the resolution we made in January; to keep moving all year long. So far, we’ve been tracking our steps and competing to see who walks the most. (Skip the elevator for the stairs, anyone?) Then we started our softball team, The Riffraff.
In April, we took a step further and participated in the Insurance Office of America (IOA) Corporate 5K. This year, 15 members of our team participated in the walk/run around the iconic Lake Eola in downtown Orlando alongside more than 16,000 runners and walkers from over 700 companies.
Beyond getting our hearts pumping, the 5K raised money for the Track Shack Youth Foundation, Inc., and participants raised money for 100,000 meals for Second Harvest Food Bank of Central Florida and Orlando’s Christian Service Center Love Pantry. At TAF, we’re honored to help others, and the IOA Corporate 5K provided a rewarding opportunity to do so while promoting health and wellness for our TAF family.
KEEPING OUR NEW YEAR’S RESOLUTIONS – GET MOVING IN 2018!
Since 2016, TAF has been participating in the Insurance Office of America (IOA) Corporate 5K.
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 3
Q&A: PURPLE PROS
How did you learn about TAF?
My brother heard about the job opening for a patient advocate at TAF. He immediately told me because he knew about my strong passion for nonprofit work.
What have you gained while working at TAF?
Speaking with so many different patients and hearing all their unique stories has taught me lessons that I will take with me throughout my entire life. I have learned that you never know what a person is going through. Life gives you twists and turns that you can never anticipate, and all you can do is remember that we are human and in this together.
It is truly fulfilling to work at TAF. We get to change lives on a daily basis by relieving the stress and financial burden put on patients and their families. At times, it can be emotionally difficult, but hearing the relief and gratitude in a patient’s voice when we can help makes it all worth it.
What has been your proudest moment while working at TAF?
I don’t think I can pin it down to one moment. The assistance that we provide affects patients in so many ways, some that we know about and others we don’t. I’m proud to be a part of an organization that can help so many people in need. We are all human, and all we can do is try to help each other get through the difficult times.
As a patient advocate, how are you trying to improve the patient experience?
It is my job to make the patient experience as smooth as possible and assist in any way I can. I always put myself in the patient’s shoes to try and understand what their needs are. I make sure to explain everything in full detail and answer any questions that may arise to the best of my ability.
Do you have any advice to share with patients?
The best advice that I can give to patients is to keep in constant contact with TAF to ensure that their account is up to date. Patients can call our automated self-help menu to check their status on enrollment, re-enrollment, and reimbursements 24 hours a day, seven days a week by calling 855-845-3663.
Do you have a hidden talent?
I play the flute.
Where did you work before you joined TAF? What is your background?
Judith: I worked for 14 years
at Goodwill Industries of
Central Florida as the Vice
President of Public Relations
and Marketing. I’ve worked
for nonprofit organizations
for most of my career.
I graduated with a degree in
business and marketing from
Johnson College.
Bruce: I have always worked
in the service sector, with
a primary focus on call
center-type operations.
Most recently, I was with
AcariaHealth Pharmacy
Solutions as Director over
multiple locations.
How did you learn about TAF?
Judith: I was searching
for a new employment
opportunity, a nonprofit that
helped people. I was very
pleased to find TAF.
Bruce: From my experience
in specialty pharmacy, I
was familiar with the type of
assistance provided by TAF
and was very excited when
I was offered the opportunity
to join.
Why did you join TAF?
Judith: I believe in the
mission of TAF and the good
work the organization does
to help so many people who
need help paying for their
medical out-of-pocket costs.
Bruce: TAF fulfills my career
goal of providing the ultimate
service: working in a nonprofit
to help others in need.
Could you describe your role at TAF?
Judith: My role is to manage
the communications efforts
amongst staff, the board
of directors, patients and
community partners. I work
with staff members to
celebrate milestones, plan
special events, design art for
a variety of uses, manage
print materials and monitor
social media. I wear many
different hats to better
address the needs of the
organization.
Bruce: My role is to manage
day-to-day operations,
including the call center,
patient communication
and financial assistance
processing.
JUDITH AND BRUCE Q&A
Jackie has been a patient advocate at TAF since 2017.
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 4
AS A RARE DISORDER, HOW DIFFICULT WAS THE DIAGNOSIS OF HAE?
When I was in my 20s, I started to experience unexplained swelling. I would go to the emergency room and at first, they thought it was allergies, then lupus, then cancer, then spousal abuse and then they thought I was just an attention seeker. Ultimately, they asked me to stop coming to the ER because there was nothing they could do to help me. So I would sit at home for days, and sometimes have to crawl on the floor or scoot around sitting in an office chair when I couldn’t use my hands or feet. I kept researching and finally stumbled across images of people with HAE on the US Hereditary Angioedema Association site. That’s when I knew. I called the association and found a doctor who diagnosed me and prescribed treatment.
HAS TREATMENT HELPED?
At first, I was so nervous about taking medication in case I didn’t actually have HAE. But then I had an episode with severe facial swelling and the nurse called to encourage me to try treatment, which has to be administered by a healthcare professional. I waited for 24 hours before I finally decided to go for treatment. Thankfully, the medicine worked the first time and has worked every time since. Most of my attacks are in the neck and face, which can be life-threatening. So, the medicine is truly a lifesaver for me.
HOW CHALLENGING IS IT TO PAY FOR TREATMENT?
I could not afford it at all. I’m on Medicare for disability. One dose of my medication costs a lot and during an attack, I’ve had to use more than one dose. Last year, the drug cost on Medicare was over $400,000 and that doesn’t include ambulance and medical bills.
HOW HAS TAF HELPED YOU?
Without TAF I wouldn’t have any medication to combat the disease, which means I probably wouldn’t be alive today. That’s not a cliché. TAF has enabled me to go home and live my life because I have access to medication. Not only do I get to spend precious time with my family – my husband of 41 years and my beautiful children and grandchildren – but I am continuing my education and even learning sign language, so I’m prepared if I ever completely lose my hearing. I really just want to hug everyone at TAF!
WHAT WOULD YOU RECOMMEND TO OTHER PATIENTS WITH RARE DISEASES AND COSTLY TREATMENTS?
If you’re a rare patient, the first thing you think is I can’t afford treatment. You also can’t imagine anyone would give you money to help cover the cost of expensive medication. In fact, many patients will hesitate to reach out to anyone for fear it is some kind of scam. You just can’t imagine someone would want to help because it is so costly. But there is help from organizations like TAF and I want people to be aware of HAE and how TAF is helping this community.
We recently spoke with Laura in Florida who suffers from hereditary angioedema (HAE), a rare disorder that causes frequent, painful and potentially life-threatening episodes of swelling in different parts of the body. Laura has experienced more than 300 episodes of swelling since she was diagnosed in 2009, each requiring a life-saving treatment that can cost hundreds of thousands of dollars each year. Thanks to support from TAF, Laura can access the medication she needs to continue enjoying her life with her husband, two children and four grandchildren.
“Last year, the drug cost on Medicare was over $400,000 and that doesn’t include ambulance and medical bills.”
Patient Profile
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 5
Many patients seek out support groups to connect with others who have a similar experience. Support groups typically connect people with the same health condition, such as Parkinson’s disease or a rare disease like Hunter syndrome. Support groups can be an important part of a patient’s care plan, providing both valuable information and needed emotional support.
There are many potential benefits to participating in support groups, including:1
• Feeling less lonely, isolated or judged
• Gaining a sense of empowerment and control
• Improving your coping skills and sense of adjustment
• Talking openly and honestly about your feelings
• Reducing distress, depression, anxiety or fatigue
• Developing a clearer understanding of what to expect
• Getting practical advice or information about treatment options
• Comparing notes about resources, such as doctors and alternative options
There are many ways to find support, from in-person groups in your community to online forums. Here are some ways to get connected:
LOCAL SUPPORT GROUPS Most communities, large and small, have various support groups. To find a group in your area, start by asking the members of your healthcare team, including physicians, nurses and social workers, who can usually point you to the right resources. You can also reach out to national or local patient advocacy organizations for your disease or condition or contact community centers, such
as hospitals, libraries or religious centers. If you are unable to identify an organization in your local area that meets your needs, consider connecting with an online community.
ONLINE SOCIAL NETWORKS There are numerous benefits to connecting with others online.2 3 An online forum is always accessible, providing immediate and continuous connection to people and information. Some patients feel more comfortable with the anonymity and are more open to sharing their experiences and seeking out advice from others. Most importantly, online support can provide the same emotional benefits as in-person support.
It is important to remember that people may not be who they say they are and online groups can be used to prey upon vulnerable people. For this reason, be careful not to reveal personal information, such as full name, address or phone number. Also, be sure to understand the terms of use and how private information may be shared. Finally, don’t let your online network replace your in-person network; both play an
important role.1
FORMING YOUR OWN GROUPS If you can’t find a support group that is right for you, consider starting your own group. If you’re interested in hosting an in-person group, advertise the group in your community through local centers, newspapers, or through local social media pages. To kick-off an online group, health sites like WebMD allow users to generate their own community with the option to make it private and only invite select participants or make it public for anyone to join.
Whatever format is right for you, connecting with a support group can have a meaningful and lasting impact on your health.4
Finding SupportFrom selecting the right healthcare team to navigating important decisions about treatment and chronic care, facing a new diagnosis or managing a condition can be overwhelming. But you don’t have to brave it alone.
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 6
HAVE YOU USED OUR NEW TELEPHONY SYSTEM OR UPLOADED YOUR DOCUMENTS ONLINE? Late last year we launched our new telephony system which boasts several new features to make your life easier, including:
Communication
TAF GETS BEHIND NATIONAL HEALTH OBSERVANCESHere at TAF, it’s been a busy few months as we continue to prioritize honoring national health observances both in the office and on social media with the broader TAF community. We also try to share useful health tips or information when we honor these months. Here are some highlights from the last few months.
• June 3rd was National Cancer Survivors Day. There are more than 15.5 million people alive today in the United States who have been diagnosed with cancer.
• During Arthritis Awareness Month in May, we learned from Cleveland Clinic that a diet high in omega-3 fatty acids, such as wild salmon, flaxseed and olive oil, can help reduce inflammation and flare-ups.1
• April brought us Parkinson’s Awareness Month, when we shared important tips for Parkinson’s caregivers from Parkinson News Today, including the importance of looking after yourself and destressing.
Keep checking our Facebook page to stay up to date with our latest activities in honor of national health observances.
AUTOMATED SELF-HELP MENU The menu provides you with your status on enrollment, re-enrollment, and reimbursements 24 hours a day, seven days a week. All you need is to provide your cardholder ID number and date of birth when prompted.
VIRTUAL HOLDWe know that you are busy and don’t always have time to wait on hold when you call us. Our virtual hold option allows you to hold your place in line, rather than holding on the line. Once it’s your turn one of our patient advocates will call you back.
If you have any questions or difficulties using the automated phone system or would like to share feedback, please feel free to reach out to one of our patient advocates by calling 855-845-3663. We always enjoy hearing from you.
ELECTRONIC DOCUMENT UPLOAD Our document upload system allows you to submit documents electronically. We created the system to make your life easier by simply uploading documents to our website rather than faxing or mailing them.
When you upload your documents online we can process your reimbursements faster, which is part of our commitment to help you with your copayments, coinsurance, deductibles and other health-related expenses. To access the system please visit: http://www.tafcares.org/upload.
THE ASSISTANCE FUND QUARTERLY NEWSLETTER | SUMMER EDITION 2018 | PAGE 7
4700 Millenia Blvd., Suite 410
Orlando, Florida 32839
tafcares.org
WANT TO REACH US BY PHONE?
We’re available Monday through Friday at (855) 845-3663, 9am - 6pm ET, excluding holidays.
Our fax number is (866) 254-9411.
Conferences we attended over the last quarter allowed us to connect with both specialty pharmacies and some of our youngest patients and their caregivers.
We had an active spring on the road attending three important meetings that provided us with an opportunity to meet with both the specialty pharmacies that are a leading source of referrals to our programs as well as connect with some of our youngest patients and their caregivers.
HERE ARE SOME HIGHLIGHTS:
At the beginning of the quarter we attended the National Myasthenia Gravis (MG) Conference in Kansas City, which is hosted by the Myasthenia Gravis Foundation of America, Inc. The conference is the largest gathering of the MG community in the US and was a chance for us to connect with both patients and professionals.
In late April, we were an exhibitor at the Asembia Annual Specialty Pharmacy Summit in Las Vegas. While we have attended Asembia in past years, this was our first year exhibiting, which afforded us the opportunity to increase awareness of our assistance programs among specialty pharmacies and to network with a diverse range of attendees, including pharmacists, advocates and CEOs.
Having a dedicated presence at the summit enabled us to disseminate important information about TAF’s role in assisting patients with high out-of-pocket medical expenses.
On the RoadOur second spring conference was the CureDuchenne Regional Family Summit in Houston in May. The summit was a powerful event that brought together patients with Duchenne and their families for education and support. Duchenne is the most common and severe form of muscular dystrophy. Our goal at the summit was to raise awareness among the Duchenne community about the support TAF offers to help families manage their medical costs through TAF’s Duchenne Financial Assistance Program.
In addition to meeting with members of the CureDuchenne association, the TAF team had a chance to connect with multi-disciplinary providers, including cardiologists, physical therapists and speech pathologists, all of whom helped us appreciate the range of medical challenges that patients have to manage and why proactive and comprehensive medical care is so important.
We were most touched to meet young patients with Duchenne and their families, including the parents of a patient enrolled in our program. It was especially inspiring to witness the power of the support networks – kids making new friends and parents sharing accomplishments of their kids they didn’t think possible. We look forward to continuing our support for this community and participating in the next CureDuchenne Regional Family Summit in Boston later in 2018.
