Affordable Healthcare: How to Get Charitable Aid for Medical Expenses🏥

Welcome to the Living to 100 Club Podcast. Here's our host, Dr. Joseph Casciani.

Well, hello to all of our listeners joining us today for our podcast. You're listening to one of our Successful Aging episodes this month on the Living to 100 Club program, and I'm your host, Joe Casciani. On each program, our conversations educate and inspire, helping you get the best out of all the years we're given, regardless of what obstacles come our way. You can learn more about my club at my website. Be sure to take a look at my new training and activities manual, Better, Longer, and Happier: A Guide to Aging with Purpose and Positivity. It's a series of 12 modules in a card deck format developed for activities directors at senior living communities and senior centers. Now on to our podcast. On today's program, our guests introduce us to The Assistance Fund, one of a handful of independent charitable assistance funds. Danielle Vizguéno, President and CEO of The Assistance Fund, and Margaret Figley, Director of Communications, are the guests. They describe how TAF provides financial assistance to patients facing high copayments, deductibles, and other health-related expenses. We learn how manufacturers support this nonprofit program through donations, which in turn get passed on to the underinsured patients across the country. What are the eligibility criteria? What types of financial assistance are there? And what resources are available for people who have health insurance but cannot afford their out-of-pocket costs for treatment? Stay tuned, we'll be covering these topics and more. First, some, uh, background. Danielle leads a diverse organization of more than 80 employees in Orlando, Florida, and Washington, DC. She oversees TAF's nearly 90-degree Disease Programs, which since 2009 have helped nearly 190,000 people access the critical need treatment they need to manage a life-threatening chronic or rare disease. Danielle is a member of the American College of Healthcare Executives. She earned an MBA and MPH from the University of North Florida and a Bachelor of Science degree of molecular biology and microbiology from the University of Central California. Margaret, or Meg, Figley is a seasoned communications leader with nearly 2 decades of experience shaping communication strategies for impactful healthcare nonprofit organizations, hospital trade associations, and the federal government agencies. As the Senior Director of Communications at the Assistance Fund, Meg is the driving force behind the organization's communications and branding initiatives, ensuring that its mission and message resonate across all key audiences. Meg has an MPA in Health Policy and Management from New York University's Robert F. Wagner Graduate School of Public Service. And a BA in government and politics from George Mason University. Danielle and Meg, welcome to our program today. Thank you.

Thank you, Joe.

Oh, you're very welcome. Yeah. So I always like to open by asking my guests to share a little bit about the highlights of the, the journey that brought you to where you are today. I covered it somewhat in the, in the bios, but what stands out in your minds that brought you to where you are today?

Thank you, Joe, again for inviting us. I'll get started. Danielle Viscaino here. I guess, Joe, for me, I've, I've had a passion for healthcare from a very young age. I was always intrigued by medical shows, often trying to figure out the diagnosis before it was revealed. This early interest led me to pursue a degree in molecular and microbiology. During my undergraduate studies, I realized that diagnosis is just the beginning.

Hmm.

And that often many barriers within our healthcare system prevent people from accessing the care that they need. Being a, a natural problem solver myself, I wanted to dive deeper into public health and the healthcare ecosystem to understand how these issues could be addressed. This motivated me to pursue a master in public health and an MBA. While studying, I also gained hands-on experience as a mycobacteriologist at the Florida Department of Health Bureau of Laboratories in Jacksonville, Florida. After graduating, I then transitioned into healthcare administration, taking on a role of the director of operations for a very large workers' compensation organization and eventually moved back to the Orlando area to join TAAF as their VP of operations in November of 2016. 2016. And over the past 8 years, my responsibilities have grown to include managing departments like philanthropy and communications. And then in May of 2023, became the, the newest president and CEO. One other significant note is that a personal discovery of myself came when I was planning to start my own family and learned that I am in fact a carrier of a rare disease called hypophosphatasia. And this experience has further deepened my commitment to improving healthcare accessibility and outcomes for others.

Wow. Yeah. Well, you've covered a lot of ground in your background and education and credentials, and now you're even seeing both sides of the fence, so to speak. So you can already appreciate the good work that you're doing, but putting your, you know, yourself in the shoes of some of the patients, that only makes you more effective. Yeah. Thank you. Thank you, Danielle. And Meg, how about you? What are the highlights in your journey?

Sure.

Yeah, it's interesting. I never imagined I'd find myself working in healthcare or communications when I was younger. My initial goal was to become an attorney. And I began my career as a legal assistant at an international law firm. However, when I moved into a role in the legal department of the Greater New York Hospital Association about 20 years ago, I developed a strong interest in healthcare in the nonprofit sector. And that shift in focus led me to pursue a master's in public administration, uh, with a, a specialization in health policy and administration while I continued to work in the healthcare nonprofit sector. And I spent the last two decades crafting communication strategies for many different nonprofit healthcare organizations. And for the past 5 years, I've been leading the communications and branding efforts at TAF. And separately, similar to Danielle, last year I was diagnosed with a rare disease that seems not so rare because I keep finding out more people who have it, Meniere's disease. And I, I have a new perspective on access to medication because I've had a couple of different medications that I had to take daily that help me manage my condition to the point where it's almost unnoticeable most of the time. And I can't imagine how different it would be if I couldn't afford the out-of-pocket cost for my medication and I wasn't able to have it because it is the disease that gives you vertigo and makes you dizzy. And if you don't have the right medication to manage that, it really changes your quality of life. So I am on the same boat as Danielle in the sense that I, I learned the patient perspective as well and how much organizations like TAF have an impact on patients' lives.

Yeah, well, well, thanks to the very capable women heading up the organization there. TAF is— this is a new topic for me— Independent Charitable Patient Assistance Programs, and TAF is one of these programs. So Tell us a little bit about these programs and, you know, what's it all about? How do you connect with different payers and different companies, manufacturers?

Sure. A charitable patient assistance organization is an independent nonprofit entity that provides financial assistance to patients who face high out-of-pocket medical costs. So they help patients afford treatment that they may not otherwise be able to pay for, often focusing on children and adults living with life-threatening chronic and rare diseases to ensure their complete independence. They operate under strict guidelines from the Office of Inspector General at the U.S. Department of Health and Human Services, and through their specific disease programs, they offer assistance for all of the FDA-approved treatment for that particular disease that's covered in the program. On the other hand, you have Manufacturer patient assistance programs, which are operated by drug manufacturers and only provide financial assistance for their own products. And due to federal anti-kickback statute, they can only help uninsured patients or patients with commercial health insurance. So they are prohibited from helping patients with public health insurance like Medicare, Medicaid, or TRICARE.

So the manufacturer programs, are those like the little ads that you see at the tail end of the commercial for some medication? If you're— you may qualify for assistance.

That's right. So those are often copay cards offered through manufacturers.

Sure. Well, so yours is the Assistance Fund, TAF. Are there other Others like you, others, other TAFs, not TAF, but like you. Yeah.

Well, we'd argue that there's no other TAF, and that's how we refer to ourselves. It's a little easier to say. But there are 8 other similar organizations in the space. They are Accessia Health, Cancer Care, Good Days, HealthWell Foundation, Leukemia and Lymphoma Society, the National Organization for Rare Disorders, the Patient Advocate Foundation, and the Patient Access Network Foundation. But then, as you can tell by some of those names, some focus on particular diseases. For instance, uh, the National Organization for Rare Disorders, which is also known as NORD, is focusing on rare conditions, while Leukemia and Lymphoma Society is obviously in the oncology space. But one of the main differences between TAF and other organizations in our space is that once a patient is enrolled in our disease programs, their assistance lasts the entire calendar year, and it's— there's no cap on the amount of assistance they can receive as long as it's an FDA-approved treatment for that disease and it's covered by their insurance. Um, so other programs, uh, a couple of the others in our space that are are broader with their disease programs like we are, have a grant system. So a patient applies, they get a grant of a certain amount that's usually determined by an actuary. And then once they run through that grant, they have to reapply for another grant if that disease program is open.

Well, so you mentioned the others, 7 or 8 others. I mean, there's— people have insurance, right? People have health insurance, commercial insurance through their employer or paid privately. And then there's public insurance, Medicare and Medicaid, and Affordable Care Act has other plans. But what— I'm just wondering, what are the gaps that your organization fills? Why do we need these organizations in the first place?

And we, we touched on this a little earlier, but the main reason organizations like ours exist is that if we didn't, people with life-changing diseases who have public health insurance, like you mentioned, Medicare, Medicaid, TRICARE, would have nowhere to turn if they couldn't afford their out-of-pocket costs for treatment. And this is because of the federal anti-kickback statute, which prohibits pharmaceutical manufacturers from directly assisting patients with public health insurance. That said, TAF enrolls patients in our disease programs with any kind of health insurance, whether it's private or public.

Mm-hmm. Okay. So, it's the copayments, the huge bills that people are faced with after some major hospitalization or surgery. And these are the extra kind of charges that the insurance doesn't cover. Maybe deductibles, other coinsurance payments that have caps. Is that, is that what we're, we're filling here?

No.

Yeah. Go ahead, Danielle.

So these are our organization. Joe specifically helps with co-payments related to the treatment. So that's typically co-payments or whatever the insurance isn't covering for the drug, but then also And we, we may get to this a little bit later, but the financial assistance associated— so financial barriers associated with actually getting the treatment. So health insurance premiums, all the medical incidentals, if that's an infused drug, all the infusion-related costs, that's something that, that TAF also assists with. But it is surrounding really the treatment and the access to the medication.

And one thing to note is that TAP is the last payer. So we, we, your insurance has to cover the treatment for us to then cover the, the remaining amount that's out of pocket for the patient.

Okay.

That's one of the requirements.

Yeah. All right. So that's helpful. Thanks. Thanks to both of you. So who's eligible? Who qualifies for these benefits?

Sure, I can take that one. Um, they must be a U.S. citizen or permanent resident. They must have health insurance, private or government, as Danielle mentioned. Uh, they must meet certain income requirements based on a multiple of the federal poverty level. And we have a really handy tool on our website on our eligibility page where patients can plug in a few different criteria and then determine whether they're eligible. But it's basically how many people are in the household, what their income is, that kind of information. Um, they must have a qualifying diagnosis, which means that they are diagnosed with a disease for which we have a disease program. So, you know, we don't have a disease program for every disease out there, but we do have nearly 100 now.

Yeah.

Um, and they must have a prescription for an FDA-approved treatment for the disease named in the program they're applying to, and it must be covered by their health insurance. So sometimes we do have a case where a rare patient, a rare disease patient, a doctor might have prescribed them a medication that helps to manage their symptoms, but it's not indicated for the disease that they have by the FDA. And we can't allow— we can't provide assistance for that because of the regulations that we operate under from—

Sure.

—Office of Indian Health and Human Services General at HHS. Yeah. Yeah.

Okay. The black box kind of medication, it's used even though it's not part of the prescription criteria for that particular drug. Yeah. Okay. So 90 to 100 programs, diseases that you cover. That's a huge number. I can see where a whole lot of people would fit under that umbrella. How do you, how do you determine which diseases you cover. How do you narrow it? How do you not expand it further?

I'll take that one. Now, we identify prospective disease programs by monitoring clinical trial activity. Routinely, we're reviewing the drug development activity of our existing and prospective donors. We're monitoring disease programs of all other independent charitable patient assistance organizations that Meg mentioned earlier. And also public inquiries. We get plenty of public inquiries from patients, providers on a daily basis that our team is going through and evaluating, um, if that's a disease that falls under the criteria that we would be able to support, um, and something that we could get donations for. In the event that a patient contacts us and we do not have a disease program for their diagnosis, we do our best to help identify other potential resources, often referring them to our peer organizations or another patient advocacy organization in that space. Okay. Yeah.

So, um, 90 or 100 diseases certainly cover a lot of territory, but, um, are there some major classes that don't fall under that umbrella that you do not have in your program yet? Major diseases? I mean, do you know what I mean? Any particular types of conditions, chronic conditions that you have not moved under your umbrella yet?

There are plenty of diseases that we don't support. But what I will say is that I think the last time I looked at the spread of disease programs across the particular type of diagnosis, we covered about 11 different areas of medicine. So oncology, rare diseases, as Meg mentioned, immunology, cardiology, respiratory. So there's— we always encourage individuals that, that are looking for assistance that they check our website periodically because we're always adding programs that we can support and receiving donations for those programs. So there's new programs that open yearly that would cover potentially an individual's diagnosis.

Well, well, to that, um, one I'm very excited about that we opened this year is in the mental health space. We opened a PTSD disease program, so we've ventured even further this year.

Yeah, well, that's my background, um, you know, psychiatric disorders and DSM, uh, for psychiatric conditions. So that's good to hear you're covering that and There's a lot of diseases. I mean, we know there's probably millions of ICD diagnoses, right? So there's a lot that you cover. Can you, just to back up a little bit about the benefits, can you share some explanation of how people are left with these huge financial, you know, bills for treatment or medication. What— how does that add up to? I mean, we hear stories all the time, you know, people facing the possible charges of $30,000 or $40,000 that their insurance is not covering. What are some reasons why these costs pass on to the patient?

Well, at TAF, we really focus on the out-of-pocket costs after insurance. So after insurance has covered the treatment, we offer assistance with things like the deductible, which refers to the amount a patient has to pay before the insurance starts covering expenses. So for example, if an insurance plan has a $1,000 deductible, the patient must pay $1,000 out of pocket before the insurance kicks in. So that's one thing that we've all faced, I'm sure, um, in our experience with health insurance. We also help with copayments, which are the fixed amounts the patient pays for a specific service. So for instance, if you go to the dermatologist and you have a $20 copayment or $50— or actually, no, that'd probably be for a primary care physician, a $20 copayment, but maybe $50 for a specialist like a dermatologist. Insurance then would cover the rest of the cost after your copayment. And then we, we also help with coinsurance, which is after meeting the deductible, patients may still have to pay a percentage of the cost for covered services. That's what coinsurance is. So for example, if the plan covers 80% of a procedure, the patient may have to pay the remaining 20%. And then finally, the insurance premium, as Danielle mentioned, that's the amount of money a patient must pay in return for coverage. This could be paid monthly, quarterly, semi-annually, or annually. And finally, with some of our disease programs, we do cover incidental medical costs, like the cost of food, lodging, or transportation if a patient is required to travel to receive their medical treatment.

So, okay, just a wide range of different sources of these charges. I heard about a case on— I was listening to NPR yesterday. It talked about someone who goes in for surgery, or, you know, anticipated procedure, consents and everything is in place, and the surgeon finds something else that needs to be addressed, and that was not agreed upon, and it's then it's actually billed as a separate surgery. I don't know if that would create or incur additional copays, but I'm thinking there's probably a lot of exceptional kind of procedures that insurance may not cover. Does that sound familiar, that scenario?

Well, it's a typically for us, it wouldn't be something that we would cover if insurance doesn't cover it. So we, you know, because once patients are enrolled in one of our disease programs and we do have no cap on the amount of assistance they can receive. The way we are able to do that is by ensuring that they have health insurance and that we are going to be the last payer. Otherwise, if they didn't have health insurance or health insurance didn't cover their treatment, we wouldn't be able to help nearly as many patients as we help each year. I see. So it's not something that I think would come across our desk very often unless, Danielle, you can think of any situation.

No, no, not that I've seen.

Okay. Yeah. Thanks, Meg. That clarifies a lot that the person has to have health insurance to begin with out of the gate.

So, um, cover their treatment. Yeah.

How about the, um, the manufacturers then that participate in these programs? How, how are they involved? What's the incentive for them to, to donate to these causes?

Danielle, do you want to take that one or— Oh, was that— Okay, I can take it. As we discussed earlier, most pharmaceutical manufacturers have free drug programs, also known as patient assistance programs. So these programs provide free or low-cost medication to eligible patients who can't pay their out-of-pocket costs for treatment. Mm-hmm. Um, however, due to federal regulations, manufacturers are not allowed to provide direct assistance to people who have government-sponsored insurance like Medicare, Medicaid, TRICARE. Mm-hmm. Um, and that's where we come in, the independent charitable patient assistance organizations. Mm-hmm. Uh, manufacturers donate to one of our disease programs to ensure that the patients they cannot help directly can still access treatment. Oh. So By contributing to third-party charities like us, manufacturers can support patients indirectly while adhering to legal restrictions. However, once they donate to us, they have no say on what product a patient uses, and neither do we. So with us being the last payer, we are not there when the, when the doctor is prescribing the treatment. The doctor could pick a brand name, the doctor could pick a generic. We have no say in that matter, and we cover all FDA-approved treatment for a disease. Um, and finally, as we mentioned, TAP is the last payer, meaning that we help with the patient's out-of-pocket costs after their health insurance has paid its portion, such as the costs that I just reviewed— the copays, coinsurance, deductibles, and incidental medical expenses. Sure.

Okay, thank you. Are there other other companies or manufacturers besides the pharmaceutical companies that contribute to your program?

So we do have, um, a whole philanthropy program that's totally separate from the manufacturers' donations, where we are appealing to independent donors and other large corporations who are not necessarily in even the healthcare space. And we've made a significant amount of money through that program as well. And we keep trying to grow our sources of funding.

Yeah, I see. Okay, thanks. That's helpful. I'm coming to understand how this organization works and TAF and others like you. How many people have you helped over the years?

This— good question, Joe. And I think something that we're all proud of at TAF. Since we were founded in 2009, we have helped over 190,000 children and adults access the treatment they need to manage a life-changing disease. And we're actually celebrating our 15th year. Meg and I were just talking about that. It came so quickly and we were all so excited, you know, excited. And we were like, wait, we're in our 15th year. So we were all so busy doing our, doing our thing, so we didn't even recognize it. But in, in 2023 alone, we helped 40,070 people. And for the patients enrolled in our rare disease programs, we are often helping more than one family member because so many of these rare diseases are genetic. Um, and, and something else to note and consider is when you hear those numbers of how many people we've helped is often how we're re-enrolling patients year after year. So we're providing some of these patients, majority of these patients with consistent financial assistance for their treatment year after year, which we're really proud of as a group.

Yeah. So there's no cap as long as they qualify, as long as they're eligible. That's correct. Can you tell our listeners kind of the average amount that you help? And I'm sure it's a pretty broad range of, you know, dollars, smaller to larger. What's the average amount that you contribute?

Oh, that would be— it would be— and Megan, unless you know off the top of your head, because we just did our impact report not too long ago, but it's so widespread, Joe, because we're helping with oncology and rare diseases. So it would be really hard to even average that out to a meaningful number. But in some programs, it's quite large. As you can imagine, a lot of these medications cost individuals a lot of money in the transportation to get to these specialty facilities and excellence of care, right, where they have to receive this type of treatment. Involves travel and lodging and food. And, you know, we assist with all those things. So, yeah, you know, there's a wide range between the programs of what the average would be of assistance provided.

Yeah, terrific. Really great, great benefits, great value to your, your members. I'm guessing then could be tens of thousands of dollars that might be going to some of the patients.

Yeah. Well, yes, in some programs, yes.

Well, so how can people learn more and how would they qualify? How can they find out if they qualify?

Yeah, so anyone interested in applying for assistance, the quickest way to do that is to visit tafcares.org. That's TAF cares.org. There they can see our nearly 100 different disease programs, and they can calculate whether they're eligible or not. Um, they can also call 855-845-3663 to speak with one of our patient advocates. Um, if they have a diagnosis that we do not have a disease program for, uh, as Danielle mentioned earlier, our patient advocates can help them navigate what resources are available at our peer organizations. And our peer organizations do the same thing for us. If they don't have a disease state that a patient is calling to apply to, they often refer patients to us as well.

Sure. Okay. So that's TAFcares.org. Yep. Phone number is 855-845-3663. To speak directly with one of the advocates. Well, that's great information. Thanks so much for sharing. This is a— it may not be unique to you, but it's unique to me, and I'm sure it's unique to a lot of people who are listening to this program. Any final takeaways for our audience? What would you— what would you hope they remember from our conversation?

First, Joe, we would hope people will walk away from the conversation knowing that they have somewhere to turn. A diagnosis of a life-changing disease can be a very overwhelming experience. And beyond the obvious health implications, right, that come with the new diagnosis, people often face sticker shock when they learn, geez, how much is this going to cost me out of pocket for their treatment? We are here to lift that burden so patients and their families can focus on their health and not worry about how am I going to put dinner on the table or how am I going to pay my mortgage or my vehicle. But But we obviously can't do it alone. So every dollar we give to assist people we serve comes from our generous donors. So we hope that if any of your listeners can donate, that they will. And the easiest way to do that, to make a donation, is to visit our website and click the donate button at the top of our homepage.

Great. Great. Any thoughts, Meg? Anything else to add? I mean, that's great. Great takeaway. Great advice. Encouragement.

The only thing I would say, it's really not a new idea, but part of my job is speaking with so many patients who have received assistance from TAF, and they're often shocked that we exist, and they're so relieved. And we've got a Medium blog where we feature nearly 100 different patient stories where they tell in their own words their journey from the diagnosis to getting assistance. And I just want more patients out there who are facing a life-changing diagnosis to share that experience of knowing that we've got them. Yeah.

Well, that's great. Well, thanks to both of you for that information and for that recommendation. You're right, Danielle, that people don't have to go through this alone and feel swamped and overburdened with tremendous medical bills, that there are resources available. So So kudos to both of you for, you know, making this— you and your team to make this available to people in need. Well, it looks like we're, looks like we're out of time for today. But before we wrap up, I just wanna remind my listeners to visit my website, livingto100.club, sign up for my email list and download a free copy of my 9 Tips to Make Living Longer Enjoyable. And if you're affiliated with a senior living setting, be sure to look for my new training and training manual, Better, Longer, and Happier. Danielle and Meg, thanks so much for being a guest on our program today. And people can go to tafcares.org for more information. Thank you for having us.

Yeah, you're very welcome.

And thanks to all of our listeners for tuning in. Hope to see you next time.