April 24, 2023

Community Fundraising Fills the Gaps

Community Fundraising Fills the Gaps

For many patients living with chronic illness the idea of “fundraising” isn’t just a child’s bakesale to pay for a field trip, it’s a necessity to pay for life-saving treatment. On this week’s podcast we speak with , Director of Outreach...

For many patients living with chronic illness the idea of “fundraising” isn’t just a child’s bakesale to pay for a field trip, it’s a necessity to pay for life-saving treatment. On this week’s podcast we speak with Sonny Mullen, Director of Outreach at Help Hope Live, an organization that has been raising money to cover medical expenses since 1983. She explains the unique aspects of fundraising for medical care and what patients should consider. 

And Terry and Bob dive into the latest healthcare headlines, including discussion of Prescription Drug Affordability Boards being implemented across the country. The name sounds good, but do they do what they say?

Don’t forget to register for the 2023 We the Patients Fly-In!

Gallup News Article: Record High in U.S. Put Off Medical Care Due to Cost in 2022

The Washington Post News Article: Need a new drug? You may be asked to ‘fail’ an old drug first

Colorado Politics Opinion: Consider rare diseases with Rx affordability board | OPINION


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Community Fundraising Fills the Gaps



We truly believe that no medical crisis should turn into a financial crisis. It never should even think of getting that far. In 20 22, 30 8% of Americans postponed medical care because of high costs when insurance isn't enough. Many patients resort to fundraising. But fundraising on top of managing an illness or medical crisis is a huge burden on patients. We'll hear how one organization has been making it easy for patients to fundraise for over 40 years. That's up next. Welcome to the Patient's Rising Podcast. I'm your host, Terry Wilcox, c e o of Patients Rising.



I'm joined by my co-host, who is recovering from his weekend at Coachella. I love, he's Dr. Bob Goldberg, co-founder of the Center for Medicine in the Public Interest Coachella. Bob, Well, I'll tell you in a I, I was gonna stay the whole time, but I could not recognize any of the bands or groups that we're playing. I could talk Coachella with you all day, Terry, but we've gotta dive into the latest healthcare policy stories that we know you'll be interested in. And that means you are listening audience, patient caregivers, advocates in the chronic disease community.


(1m 24s):

So we're also discussing the latest innovations shaping the industry, and sometimes the things that patient groups and individuals do for each other. Like today, Terry, Well, oftentimes, policy doesn't move fast enough to meet the needs of patients. And one of the biggest needs, which we all know, we talk about it on this show all the time, is access to affordable care. A medical crisis or expensive treatments can set a patient back tens of thousands of dollars, and that care can't wait for insurance or healthcare reforms to kick in. Yeah, and I, I've been there, thankfully those problems were solved, but many patients, you know, fundraising is their only option. And today we'll hear from an organization that has helped patients fundraise for medical procedures over the last 40 years.


(2m 11s):

Later in the show. We'll also give policy updates from the state level, but right now we're gonna talk about several prescription drug affordability. Boards are popping up in state legislatures, and though the name sounds good, because obviously we talk about affordability all the time, these boards could lead to fewer treatment options for patients. And then at the federal level, Congress is back in session, and there's legislation in the works to reform or address insurance headaches, like step therapy. We'll report on where those bills are and how you can make your voice heard. But first, here's Sunny Mullen, director of Outreach at Help Hope Live, an organization that has been raising funds to cover medical expenses since 1983.


(2m 60s):

The organization's original mission was to help fund the cost of organ transplants. Now they're helping even more patient communities. We've opened up our doors even more to rare and undiagnosed illnesses, to all types of catastrophic illnesses that we can assist covid, cancer, autism, diabetes. And so what we do with all of these communities is that we help them harness the power of their community, their friends, their family, their neighbors, church, school, whomever. They might know strangers even to go into that community to fundraise in a safe and responsible manner for their medical expenses.


(3m 41s):

Because we truly believe that no medical crisis should turn into a financial crisis. It never should even think of getting that far. And so we set them up with a campaign page on our website and a one-on-one client services coordinator, which is really important. We give them that support to be successful in their fundraising. And what's unique about this program, as opposed to a GoFundMe, which we're all very familiar with, I'm sure we've contributed to a GoFundMe fundraising page on behalf of friends or friends of friends in similar situations. But here at Help Hope Live, they handle all the bills for the patient, taking a lot of the burden off of, you know, having to manage these bills and pay them off of the family.


(4m 31s):

So they help them raise the money, and then they use that pot of money to pay their bills directly. Then once the funds have been raised, they come back to help Hope Live and are help hope live assets. So they should not affect the individual's asset-based benefits or become taxable income to the family, which is really important because that can happen with other fundraising platforms where the funds going into a bank account and all of a sudden you're seen as having more money than you're allowed by your Medicaid, Medicare. We've had clients come to us for just that reason, and we are here to safely manage the funds that the individuals raise in their honor.


(5m 12s):

So your fundraising for Help Oak Live, in your Honor, which allows us to be as transparent as possible as well for everyone involved. So they know that all of the funds raised are actually going toward medical expenses, and we're here for these individuals for their entire lifetime. I think this is such a really great service, Bob, especially given, you know, the recent medical expense stats we've seen from Gallup. Yeah, I mean, you gotta figure that some stuff was, oh, well, I can put this off because it's not necessary, but in the cases that help hope live supports, these are necessary, and these are after the fact.


(5m 53s):

And for patients with rare and chronic diseases, medical issues, you and I both know this are never just a one time thing. And just because, you know, maybe you get a transplant or we've helped you get, modify your house, it doesn't mean that everything is solved. Sometimes there are complications that arise further down the road, or you need a second van, or you need a second wheelchair. Well, in speaking of wheelchairs, there are all the medical necessities that an insurer might not cover. So for, you know, things that aren't covered by insurance, like Vans, we do anywhere from 25 to 30.


(6m 35s):

We pay for modified vehicles throughout the year, so about 25 to 30 vans we help our clients get throughout the year. And then another one is really the fact that insurance might pay for one wheelchair, but a lot of times an individual needs a second wheelchair for various reasons, and insurance doesn't cover that. So we can help cover that through the funds that are raised. Yeah, great program. And just reminds me of, you know, the, when, when I got this is, again, going back several years just getting a, a bill for uncovered expenses for $45,000 for my daughter, it hits you. It's so, the fact that they're there financially is important, but I think being there as an ally and as a caring companion, this group is indispensable.


(7m 23s):

So I'm glad they're there. Well, and as always, everyone will have a link to this story in the show notes where you can learn all about how Pope Live and the services they offer. This Episode of the Patient's Rising Podcast is brought to you by the patient's rising helpline. Navigating the healthcare system can be confusing, and that's where we come in. Our team of navigators has connected thousands of patients to resources, tools, and organizations to help them get the care they need. Whether you need transportation to an appointment or have questions about your health plan, our team can point you in the right direction, email us or leave us a voicemail using the information in the show notes.


(8m 11s):

Now for some health policy updates from the states. So Minnesota Home of UnitedHealthcare is attempting to pass a prescription drug affordability board. Now that sounds good. It's like, okay, we're gonna have a board that's gonna determine these things and we'll make sure that all patients are safe from high cost. But the goal is the lower pharmaceutical cost, the, that's the stated goal, is to lower the pharmaceutical cost for Minnesotans, but the end result could result in fewer treatment options for rare and chronic disease patients. So let's start with the basics. What exactly is a prescription drug Affordability review board?


(8m 55s):

Well, they, they're supposed to get together and figure out how to lower the price of newer high price medicines and to sort of set a limit on how much the state or insurers in the state should pay Seriously. The biggest issue we have with these boards is that it's not about that. It's about lowering costs for payers and insurers like UnitedHealthcare or PBMs, in which, as we all know, PBMs and health insurers at this point, they're so vertically integrated. They're one and the same. But there's no guarantee in any of this board language that A, the payers are gonna be, have to cover the drugs once the prices are lowered.


(9m 39s):

So the patients could still be denied the drugs. Number two, there's no guarantee that they have to lower the patient's copay or out-of-pocket costs or anything. There's no connection between what the patient pays and what these boards are doing. This is all payer focused. Absolutely all of it. And that is what patients need to understand. You can have a drug Affordability Review board all day long, and let me tell you, I'd be the first in line if the Drug Affordability Review Board was like, we are going to make sure that we're gonna lower cost here and the patient's gonna be guaranteed coverage and lower out-of-pocket costs because of this, you know, because we do this, this is gonna happen for patients, but the no connection is being made.


(10m 21s):

How are you reducing out-of-pocket cost? One penny? Show me where. Yeah. And they can't do it. They're doing these hugely expensive, high-concept ideas that don't actually really help patients in the end, or there's no real guarantee and they don't really know what they're doing. Yeah, there's nothing in this legislation or this, this modeling legis in enacting legislation that gives this group power. Look, none of this is ever gonna be solved until it's transparent. It literally, none of it, it's not gonna be solved. You can have review boards on your agenda. You can go get all the health policy walks in the world to sign up and get in line and write op-eds and white papers and all the things about your stuff.


(11m 6s):

But at the end of the day, it's not gonna lower cost for patients. Now, everybody, this is an issue that Bob and I were following very closely. We're following it in Minnesota because obviously it's on the docket. It's very, you know, we're trying to do some work there with our advocates and in other states we're watching it as well, since we really believe that this will impact patient care and that it's being sold as something it isn't. And that's the biggest thing. It's being sold as something it isn't. So look out for more information on this and we'll, we'll have links in the show notes. Now, let's move from the state capitals to our nation's capital, Washington, DC representatives, wens, Stripp, and Ruiz have introduced the bipartisan Safe Step Act in the house, which would reduce delays from step therapy known as Fail First, which many patients in our audience have had experience with.


(11m 58s):

And Terry, for those that have not, or our first time listeners, how do we define step therapy? I think the way to define it is that before you're able to get one drug, you have to try another drug. You Have to step through. There can be many steps you have to step through. Many drugs. There's like, this is what they want you to start with. You fail that. That's why they call it fail first. You've gotta, yeah, you've gotta step through several drugs, which is the term step therapy. Some people call it fail First. You have to fail several drugs first before you get the drug, oftentimes that your doctor originally prescribed. The really bad thing about step therapy is it doesn't always follow the patient. So therefore, say you had a job and you were with Cigna the year before, you stepped through all of these things on Cigna's plan and it's documented that you failed on them.


(12m 46s):

Well, the next year your employer changes coverage, and now you're with United. Well, that information does not always follow over to the new plan. In some cases, step therapy is appropriate, especially in antibiotic therapy, for instance, right? You know, those algorithms. But usually failing first means you have to fail two or three times. That's costly. And this cost you to the patient. It didn't cost you to the plan. And we're gonna have, I think we'll get Mark Frick back on the talk about the whole idea of out-of-pocket costs and how it's being affected by all these changes. Because the idea is to get people the right drug at the lowest cost possible right off the bat.


(13m 27s):

So big kudos to Representative Wintrop, Dr. Wintrop, and Representative Reese. Also, Dr. Reese. This bill didn't make it over the finish line in the last Congress, and that's why it needs your support. So write to your representatives to support the Safe Step, act and improve care for patients. More information on how to do this is in the show notes. While you're there, share the episode with a fellow advocate, chronic disease warrior or caregiver, And click the follow button so you don't miss out on our upcoming episodes. We'll be right back here on Monday with another new episode. Until then, for Bob and everyone at Patients Rising, I'm Terry Wilcox.


(14m 7s):

Stay healthy.

Sonny MullenProfile Photo

Sonny Mullen

Outreach Director, Help Hope Live

Outreach Director, Help Hope Live