Winter 2022 Newsletter - The Assistance Fund

President's Message

Hello Friends,

I hope you and your families had a joyful and healthy holiday season. The new year is just beginning, a time of optimism for many people—myself included. At The Assistance Fund (TAF), that means continuing to strive for the day when no person goes without treatment because of an inability to pay.

Our 2022 Reenrollment process is now complete and we have mailed all acceptance letters. Our team knows how important the Reenrollment process is to you, and we appreciate your patience. If you have suggestions to improve our Reenrollment process, please reach out to a TAF Patient Advocate over the phone or our online chat feature. We welcome your ideas.

I am pleased to share that TAF was recently included in Forbes' America's Top 100 Charities and The Nonprofit Times' NPT 100 lists for 2021. These distinctions from two nationally renowned organizations are a tremendous honor. We are grateful for the exceptional generosity of our donors, the hard work of our providers and TAF staff, and you, the patients we serve. Thank you.

Finally, this fall we launched our new Advocacy Action Center. Since its October launch, more than 1,000 of you have made your voice heard, urging your members of Congress to modernize Medicare Part D so cost is never a barrier to accessing critical treatment.

Please read on for other important news and updates below. Though the days may be colder, I look forward to many sunny days ahead.

Sincerely,

Mark McGreevy

President and CEO

Operations Team Tips: 2022 TAF Reenrollment Concludes

My name is Jan Wigington, and I'm the Director of Operations for TAF. At TAF, we strive for an efficient, user-friendly Reenrollment process. With 2022 Reenrollment complete, here are a few notable data points:

Our team handled more than 31,000 Reenrollment calls.
We received nearly 35,000 Reenrollment applications.
Our average call wait time was reduced by more than 10 minutes for both Purple and Teal Groups from last year.

We are grateful to offer so many of you assistance for the next year. As we start the next year, here are two helpful tips to ensure a smooth 2022.

Reimbursements: Your 2022 insurance plan information must be on file in order for your claims to be paid. We conduct occasional financial or demographic audits, as required by our programs. As a reminder, all claims for 2021 must be submitted by March 31, 2022.

Change of address: Don't miss important mailings from TAF. If you've recently moved, it's important that you provide your new address to TAF, as well as the U.S. Postal Service.

TAF Receives National Recognition, Top Marks in 2021

This December, TAF received a perfect 100/100 rating in Charity Navigator's Encompass Ratings. In January, TAF was named by GreatNonprofits as a top-rated nonprofit. And once again, TAF was named in Forbes' America's Top 100 Charities and the Nonprofit Times' NPT 100 lists, and received Guidestar/Candid's Platinum Seal of Transparency. Since we opened our doors in 2009, we've helped more than 160,000 underinsured people living with life-threatening, chronic, and rare diseases access their critical treatment.

New Advocacy Action Center Mobilizes TAF Patients

In October, TAF’s Advocacy team launched its first campaign from our new Advocacy Action Center, encouraging TAF advocates to contact their members of Congress to support Medicare Part D reform. Unlike other insurance programs, Medicare Part D puts no limit on the annual out-of-pocket costs older adults pay. Beneficiaries often pay most of their total cost-sharing responsibility early in the year. These upfront costs are burdensome and can result in delaying treatment. Seniors should be able to evenly distribute these costs throughout the year.

The message from our advocates was loud and clear: No one should go without treatment because of an inability to pay. More than 1,000 letters across all 50 states and Washington, DC, were delivered.

Make your voice heard by becoming a TAF advocate.

Take Action

TAF Partners With EveryLife Foundation To Strengthen Rare Disease Advocacy

TAF is committed to elevating the voices of patients through advocacy. That's why we're proud to partner with like-minded organizations, including the EveryLife Foundation for Rare Diseases. EveryLife's recently expanded Rare Giving Program supports individual rare disease patients as well as organizations that engage patients, caregivers, and others in the community in advocacy and public policy. TAF is a proud sponsor of the Rare Giving Program and is excited to once again attend Rare Disease Week on Capitol Hill (February 22–March 2). This partnership allows us to broaden our reach and deepen our impact.

To learn more about the Rare Giving Program, visit https://everylifefoundation.org/rare-advocates/rare-giving/.

To learn more about and participate in Rare Disease Week on Capitol Hill 2022, visit https://everylifefoundation.org/rare-advocates/rare-disease-week/.

Upcoming Disease Awareness Months

TAF staff wearing pink for Breast Cancer Awareness Month.

January

Blood donor

Thyroid

February

World Cancer Day – February 4

Cancer prevention

American Heart Month

International Epilepsy Day – February 14

March

Amyloidosis

Bleeding disorders

Brain Awareness Week

Multiple sclerosis

Neuromyelitis optica

April

Fabry disease

International Pompe Day – April 15

National Sarcoidosis Day – April 30

Oral, head, and neck cancer

Parkinson's disease

Porphyria

Primary immunodeficiency

Spondyloarthritis

On the Road

Conference Attendance

In 2022, TAF will attend a wide range of virtual and in-person conferences.

Myasthenia Gravis Foundation of America National Patient Virtual Conference 2022 (February 10–11, 2022)
EveryLife Foundation for Rare Diseases Virtual Rare Disease Week on Capitol Hill 2022 (February 22–March 2, 2022)
Asembia Specialty Pharmacy Summit, Las Vegas, NV (May 2–4, 2022)
Patient Assistance & Access Programs Conference, Parsippany, NJ (June 28–30, 2022)
World Orphan Drug Congress, Boston, MA (July 11–13, 2022)
Healthcare Advocate Summit, New Orleans, LA (September 7–9, 2022)

We're Growing!

So far, TAF has added two new disease programs in 2022, bringing our total to 74. Below is a list of the most recent additions:

Amyotrophic Lateral Sclerosis (ALS) Financial Assistance Program
Thyroid Cancer Copay Assistance Program

Click Here to View a Full Listing of TAF's Programs

Purple Pro: Lorena Burke, Patient Advocate

What is your favorite thing about your job?

Getting to know the patients we help. At TAF, we get to know them on a more personal basis. It’s a great feeling when my patients call and remember me.

What are some of the most common questions you receive?

The most common questions are about our disease program waitlists.

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

Passionate, patient, and empathetic.

What have you learned while working at TAF?

I’ve learned every patient is different. Some are quicker to learn and some need to go step by step. I try to treat each individual with respect and meet them where they are.

How are you trying to improve patients' experience?

With each patient, I try to figure out exactly what their needs are and then go above and beyond. With Reenrollment this was important as some patients were scared. I wanted to be there to support them and advise them to make sure they correctly filled out the application.

Describe what it’s like to work at TAF.

Working at TAF feels like a big family. Everyone makes me feel welcome.

Which TAF value do you most identify with and why?

Passion. When you’re passionate about what you do it isn’t like going to work. I love being able to tell patients about a resource or that they were approved for assistance.

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: Tia, Epilepsy Copay Assistance Program

Alis volat propriis. “She flies with her own wings.” All her life, Tia has lived by these words, the state motto of Oregon. The words capture her love of nature, a strong independent streak, and an unbreakable belief in herself.

Tia recently moved from Eugene to Portland and enjoys exploring her new town.

“There are a lot of nice trails here,” she said. “There’s a river that runs right through the city. It’s really pretty.”

Tia’s new home allows her to spend more time with her sister and niece, who live just one door down from her.

“We are super close," Tia said. “With her and her kids right next door to me, we are always there to support each other.”

The proximity to family has been crucial. A massive stroke in 2009 left Tia with brain damage, post-traumatic stress disorder, and--worst of all--seizures.

“The seizures weren’t bad for the first 10 years,” she said. “But in July of 2019, I had 30 seizures in one week.”

Her doctors diagnosed her with epilepsy and recommended important treatment, including new seizure medication, to put an end to her debilitating episodes.

“When I was discharged, I saw the treatment was $160 a bottle,” Tia said. “It was the only thing that stopped my seizures, but I could not afford something like that.”

A social worker referred Tia to The Assistance Fund’s (TAF’s) Epilepsy Copay Assistance Program. The program provides eligible individuals with financial assistance for out-of-pocket costs for prescribed FDA-approved treatment, such as copays, deductibles, and coinsurance.

“When I heard I was eligible, I was so excited,” she said. “It meant I could get back to doing things on my own.”

No longer experiencing daily seizures, Tia was able to begin counseling and physical therapy sessions. Before long, she was back to her active way of life.

“I have a couple of walking partners and have been hiking every other week,” Tia said. “Now that I am seizure-free, I can be more active and take advantage of the outdoors.”

Tia is grateful to have her independence back. With her family by her side, she is ready to take on the future.

“TAF has truly saved me financially and physically,” she said. “Now, I’m able to stay positive and focus on living a fulfilling life.”

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 our TAF Communications Associate Gracie Awalt at Gracie.Awalt@tafcares.org.

Paying It Forward

83 cents per day.

That’s all it takes to become a Champion. Join our monthly giving program today to help TAF assist even more people who are managing life-threatening, chronic, and rare diseases. When you commit to 83 cents per day ($25 per month), you will receive a special gift from TAF as a thank you.

Donate Today

Healthy Recipe: Garlic Chicken With Guasacaca Sauce

Makes: Four servings

Time: 45 minutes

INGREDIENTS

½ cup olive oil
3 large garlic cloves, peeled
1 ½ pounds carrots, scrubbed, trimmed, and cut into 2-inch lengths (1/2-inch wide)
Kosher salt and black pepper
2 ½ to 3 pounds bone-in, skin-on chicken thighs, drumsticks, breasts, or a combination, patted dry
1 avocado, pitted and chopped
1 jalapeño, stemmed and chopped
2 tablespoons rice vinegar
Zest and juice of 1 lime
1 cup chopped parsley leaves with tender stems
1 cup chopped cilantro leaves with tender stems

PREPARATION

Heat oven to 425 degrees. In a medium bowl, combine 1/4 cup oil and grate in two garlic cloves using a zester. Add the carrots and toss to coat. Lightly season with salt and black pepper and transfer to a sheet pan, reserving the garlic oil in the bowl. Add the chicken to the bowl and coat with the remaining garlic oil. Arrange in a single layer on the sheet pan skin-side up between the carrots.
Roast until carrots are tender, and chicken is cooked through with crispy skin that’s browned in spots, 35 to 40 minutes.
While the chicken cooks, in a food processor or blender or using a mortar and pestle, combine the avocado, jalapeño, vinegar, lime zest and juice, remaining garlic clove, half the chopped parsley and cilantro, 1/2 teaspoon salt, and 1/4 teaspoon black pepper. Purée or pound into a coarse mixture. With the machine running or while mixing with a pestle in a mortar, slowly drizzle in the remaining 1/4 cup olive oil and 1 tablespoon room temperature water. Purée or stir until the sauce is smooth and creamy. Taste and adjust the seasoning with additional salt if necessary. The sauce can be made a few hours in advance and refrigerated in an airtight container.
Scatter the remaining 1/2 cup each parsley and cilantro over the chicken and carrots. Transfer to individual plates along with any pan juices. Spoon a few tablespoons of the guasacaca sauce on the side for dipping. Serve warm with additional sauce on the side.

(Source: The New York Times)