Patient Newsletter: Spring 2024
President's Message
 
Dear friends,
 
I hope you and your family have been enjoying the spring season.

In case you missed it, in March, Spectrum News featured the inspirational story of Kanwar Bhutani, a man living with Parkinson's disease who defied all odds after accessing his critical treatment through TAF assistance. Meeting Kanwar in person inspired our entire team and was an important reminder of why we're working to see the day when no person goes without treatment because of an inability to pay. I hope you watch the moving segment when you have a moment.

In addition, I'm thrilled to share two other exciting pieces of news. In April, TAF was ranked #11 by The NonProfit Times as one of the best nonprofits to work for. And in March, The Assistance Fund became a new Partner of Patient Organizations member at the National Health Council. Few organizations have driven the national discussion around patient-centric policies as much as the National Health Council, and we are proud to be part of one of the nation's premier patient-centric healthcare organizations.

Enjoy TAF's news and updates below, including the extremely talented winners of this year's patient art contest. The contest is a great reminder of the wide range of talents exhibited by the thousands of people we serve.

Sincerely,
Danielle Vizcaino
President and CEO
TAF Becomes Member of the National Health Council

The Assistance Fund was thrilled to announce in March that it joined the National Health Council as a Partner of Patient Organizations. Created by and for patient organizations more than 100 years ago, the National Health Council brings together over 170 diverse national health-related organizations and businesses to forge consensus and drive patient-centered health policy. As a Partner of Patient Organizations, TAF is committed to promoting increased access to affordable treatment for underinsured people living with life-changing diseases.
Spectrum News Highlights Recipient of TAF Assistance

In March, Spectrum News featured the inspirational story of Kanwar Bhutani, a man living with Parkinson's disease who defied all odds after accessing his critical treatment through TAF assistance. Kanwar is one of the 190,000 people living with a life-changing disease who TAF has helped since 2009. We work hard because, as our President and CEO, Danielle Vizcaino, said, “There’s a person on the other side.” The devastating news of an unexpected diagnosis can happen to anyone at any time. That’s why we’re here.
Danielle Vizcaino, President and CEO, Jan Wigington, Senior Director of Operations, and Margaret Figley, Senior Director of Communications, with Kanwar, a TAF patient.
Jan Wigington, Senior Director of Operations
Operations Update

My name is Jan Wigington and I am TAF's Senior Director of Operations. On behalf of the Operations Team, we appreciate your patience over the past few months as our Patient Advocates processed your claims during our busiest time of year. I know many of you have experienced longer-than-usual hold times when calling and we look forward to restoring normal hold times soon.

Many of you recently received information with registration instructions for our new Patient Portal. TAF’s Patient Portal is a one-stop-shop for you to review your disease program information, submit and monitor reimbursement requests, update contact information, and more.

Don't worry if you have not yet received an invitation to register for the Portal. Similar to our annual reenrollment process, we are rolling out the Portal registration invitations by disease program. Be on the lookout for emails with Portal information in the coming months.
TAF Announces Winners of Third Annual Patient Art Contest
Thank you to everyone who participated in TAF's third annual patient art contest. With nearly 90 submissions from more than 60 artists, our team was once again amazed by the talents of our patient community. Congratulations to Alicia, Bea, Jim, Kent, and Nancy who were chosen as the winners of this year's contest.
Nancy G., Multiple Sclerosis Copay Assistance Program
Alicia V., Neuromyelitis Optica Spectrum Disorder Financial Assistance Program
Bea R., Parathyroid Diseases Financial Assistance Program
Kent D., Myasthenia Gravis Financial Assistance Program
Jim L., Prostate Cancer Copay Assistance Program
TAF Staff Hear Patient Perspective at Spring Event

In March, TAF was honored to have Sumaira Ahmed, Founder of The Sumaira Foundation, speak with Stephanie Marshall, TAF's Director of Patient Advocacy, and our team about her healthcare journey and advocacy for the neuromyelitis optica spectrum disorder (NMO) community. Ten years ago, Sumaira was diagnosed with NMO, changing her life and upending her promising career as an actor and dancer. In response, she formed The Sumaira Foundation, a patient advocacy organization dedicated to generating global awareness of NMOSD, supporting research to find a cure, and building community. TAF is proud to partner with The Sumaira Foundation and other patient-centric organizations to broaden our reach and deepen our impact.
Read Stories About People Like You

At TAF, we know living with a life-changing disease can be physically and emotionally difficult. You are not alone. Every month, we share stories from people around the country in our Medium patient stories blog. These inspiring stories highlight the vibrant lives the people TAF serves are leading.
Chelsea, a TAF patient
Upcoming Disease Awareness Months
May:
  • ALS Awareness Month
  • Asthma Awareness Month
  • Bladder Cancer Awareness Month
  • CIDP Awareness Month
  • Cystic Fibrosis Awareness Month
  • Healthy Vision Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month
  • Melanoma Awareness Month
  • Myositis Awareness Month
  • Spondyloarthritis Awareness Month
  • Women's Health Week
  • Cystinosis Awareness Day
  • MPS/ML Day — May 15
  • HAE Day — May 16
June:
  • AML Awareness Month
  • Myasthenia Gravis Awareness Month
  • Nephrotic Syndrome Awareness Month
  • Men's Health Week
  • World Kidney Cancer Day — June 15

July:
  • Graves' Disease Awareness Month
  • Juvenile Arthritis Awareness Month
  • Parathyroid Awareness Month
On the Road
Conference Attendance

The Assistance Fund is attending a range of conferences in 2024. Here's where we're headed in the next quarter:

  • MGFA Annual Patient Conference, April 28–30
  • Asembia ASX24 Summit, April 28 - May 2
  • Rett Syndrome Foundation Summit, June 19–22
  • PPMD Annual Patient Conference, June 27–30
  • National Niemann Pick Disease Foundation Family Support and Medical Conference, July 11–13
  • Debra for America debra Care Conference, July 28–31
Stephanie Marshall, Director of Patient Advocacy, and Mark Meier, Senior Manager of Communications, at the 2024 WORLDSymposium in San Diego, CA.
Patient Advocacy Update

The Assistance Fund is committed to providing underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy. With over 60% of TAF’s disease programs supporting people living with rare diseases, we partner with the EveryLife Foundation and Global Genes to support issues important to the rare disease community. With TAF's support of the EveryLife Foundation’s Rare Giving Program, more than 150 rare disease advocates attended Rare Disease Week in Washington, DC, in February. And ahead of Mental Health Awareness Month, TAF is a proud supporter of the RARE Mental Health Impact Grant Program at Global Genes. This critical program provides grants to patient advocacy organizations to create programs, educational tools, and support networks to address unmet mental health and social support needs.
TAF Pushes Congress to Pass HELP Copays Act

TAF recently initiated a grassroots campaign to encourage senators to cosponsor S.1375, a bill protecting copay assistance for vulnerable patients. We know copay assistance can be a lifeline to accessing critical treatment for people living with life-changing diseases. However, some health insurance plans have started using “copay accumulators,” programs that prevent copay assistance from counting toward patients’ deductibles or out-of-pocket maximums, making it harder for patients to afford their medication. Last year, the HELP Copays Act, a bipartisan bill, was introduced to prohibit the use of these harmful “copay accumulator adjuster programs.” Now, we need more senators to support the bill to improve patients’ access to treatment and ensure copay assistance counts toward their deductibles and out-of-pocket maximums. Please contact your senators’ offices and urge them to cosponsor S.1375 and protect copay assistance. 
We're Growing!

So far, TAF has added five new disease programs this year, bringing our total to 94. TAF now offers financial assistance for people living with:

  • Atopic dermatitis
  • Heart failure
  • Neurofibromatosis
  • Post-traumatic stress disorder (PTSD)
  • Systemic sclerosis
Purple Pro: Doris Acheampong, Patient Advocate

What is your favorite part about your job?
The best part about my job is making sure everyone who reaches out to TAF gets the assistance they need and is treated equally.

What have you learned while working at TAF?
I focus on my strengths and always show empathy toward patients.

What three words best describe how to be successful at your job?
Patience, persistence, and action.

How are you trying to improve patients’ experience?
I always try to acknowledge patients' concerns and be transparent.

Describe what it’s like to work at TAF.
Working at TAF is fulfilling, inspiring, and challenging.

What is one fun fact about you?
I love rice! I can eat it every day, any time of the day.

Which TAF value do you most identify with and why?
Excellence. If I'm at my best and have a good attitude, we can get closer to our vision of seeing the day when no person goes without treatment because of an inability to pay.
TAF Is on Instagram

If you're on Instagram, follow @TheAssistanceFund for the latest news and updates, as well as a look at the people behind our best-in-class patient experience.
Patient Profile: Irene, Pulmonary Hypertension Copay Assistance Program

Businessman and philanthropist Richard Branson once said, “If happiness is the goal—and it should be—then adventures should be a priority.” After a lifetime of living in Arizona, Irene and her husband, Wally, decided to embark on an adventure of their own. Retired, they moved north and settled in a scenic Oregon beach town just off the coast.

“We thought, ‘Let’s do something new,’” she said. “We have a view of the ocean, so that’s nice.”

It didn’t take long for the pair to love Oregon. Within a year, they joined a church community and found plenty to do. When they’re not entertaining visiting family members, Wally loves to walk the dog by the ocean while Irene digs into her family’s history. As a paralegal for almost 41 years, Irene employs her investigative skills for her new hobby. She and a group of her distant cousins share their genealogy findings during a monthly phone call.

“I love to do genealogy,” Irene said. “I’m on the computer researching trying to dig up dead people.”

In 2019, when Irene was still working full-time, she was diagnosed with scleroderma and pulmonary hypertension, a condition that required her to wear oxygen around the clock. Around the same time, she suffered a bad fall, which required a month of physical therapy.

“I had no idea what pulmonary hypertension was,” she said. “I try to be a positive person, but it was not a fun time.”
While Irene worked, her employer-based insurance covered most of the costs of her treatment, which amounted to over $10,000 a month. But when Irene’s health forced her to retire earlier than she’d planned, she worried about how she would access her treatment.

“I was actually talking to the doctor about decreasing the medication,” she said. “The deductibles wouldn’t be bad if I was still working full-time, but when you’re retired, your income goes way down.”

One of Irene’s doctors referred her to The Assistance Fund’s (TAF’s) Pulmonary Hypertension Copay Assistance Program. From copays to deductibles and coinsurance, the financial assistance Irene receives from TAF covers out-of-pocket costs for the FDA-approved treatment she needs to manage her pulmonary hypertension.

“I tell people about TAF all the time,” she said. “It’s a big stress reliever on my soul to not have to worry each month.”

Now, Irene’s treatment keeps her health stabilized. Without the stress of worrying about how to pay for her medication, Irene has more time to do what she loves: gardening, going to estate sales with Wally, and finding the next adventure.

“There are a lot of old people on the coast!” Irene said. “We just have fun.”
Would you like to be featured in an upcoming newsletter? If you have received assistance from TAF and are willing to share your story, please contact Mark Meier, Senior Manager of Communications, at Mark.Meier@tafcares.org.
Philanthropy Corner

Living with life-changing diseases is taxing enough without having to worry about paying for treatment. We want to continue to provide a lifeline to the people who need us most until the day when no person goes without their treatment because of an inability to pay. But we need sustained funding if we are going to continue to keep every one of our critical disease assistance programs going.
 
If not for TAF's support, more than 190,000 people living with rare, chronic, and life-threatening conditions wouldn't have received the assistance they need to pay for untenable healthcare costs. TAF has over 90 disease programs that help people receive their critical treatment—from acid sphingomyelinase deficiency to ulcerative colitis—and we need your support today to make a difference every day. Go to www.tafcares.org/donate to make a one-time gift or consider becoming a TAF Champion; making monthly donations to help us ensure treatment is available to everyone.
Spring Recipe: Pan-Seared Fish With Citrus Pesto

Makes: 4 servings
Time: 30 minutes

INGREDIENTS

FOR THE PESTO
  • ½ cup toasted pistachios or slivered almonds
  • 2 teaspoons drained and rinsed capers
  • Kosher salt (such as Diamond Crystal)
  • 2 cups mint or basil leaves (or a combination)
  • 1 tablespoon lemon, tangerine, or grapefruit zest plus 3 tablespoons juice
  • ⅓ cup extra-virgin olive oil, plus more as needed

FOR THE FISH
  • 4 (6-ounce) fish fillets, such as arctic char, striped bass, or salmon, skin on or off
  • Salt
  • Extra-virgin olive oil, for greasing

PREPARATION

Part 1:
  1. To make the pesto, add the pistachios, capers, and 1 teaspoon salt to a food processor and process until coarsely chopped.
  2. Add the herbs, citrus juice, and a pinch of salt and pulse until the herbs are finely chopped and the nuts are about the size of sesame seeds.
  3. Add the olive oil and pulse just until combined.
  4. Stir in 1 teaspoon of citrus zest.
  5. Taste, then continue to add more zest and salt until the pesto is citrusy and punchy.
  6. Thin with 2–3 more tablespoons of olive oil until it’s the consistency of a loose paste.
  7. Taste and adjust seasonings as needed. (To use the pesto on pasta, see tip below.)
Part 2:
  1. To make the fish, season it all over with salt and oil.
  2. Working in batches if necessary, add the fish (skin-side down, if your fillets are skin-on) to a large (12-inch) nonstick skillet, then heat over medium.
  3. Cook until the flesh is opaque ¾ of the way up the sides, 6–12 minutes, depending on the thickness of the fish.
  4. If the fish is buckling, press it down with a spatula so it makes contact with the skillet.
  5. Flip and cook until cooked through, 1–2 minutes.
  6. Transfer to plates, skin-side up if serving skin-on fish, and eat with a spoonful of pesto.

Tip: To make pesto pasta, skip the additional 2–3 tablespoons oil and toss the thick pesto with cooked pasta and a little pasta cooking water. Leftovers keep for up to 3 days.

(Source: The New York Times)
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The Assistance Fund
8427 Southpark Circle, Suite 100
Orlando, FL 32819
Hours: Monday through Friday, 8 a.m. – 7 p.m. ET