Helen: Welcome, to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and host of Health Literacy Out Loud.

In these podcasts you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding.

Today I’m talking with Erin Moaratty who is Chief of External Communications for the Patient Advocate Foundation (PAF). For many years Erin was PAF’s senior case manager, helping people who have catastrophic illnesses deal with issues about access to care, health insurance, employment retention and medical debt. These issues are crucial to address today.

I’m delighted that Erin is talking with us on Health Literacy Out Loud about these problems and what each of us can do, especially when it comes to medical debt. Welcome, Erin.

Erin: Good morning. Thank you for having me.

Helen: Every day in the newspaper we are flooded with economic news, and it’s almost always bad. The economic news is tied in with health news, and it often gets to that point of debt. What do you mean by the term “medical debt”?

Erin: At Patient Advocate Foundation, we report medical debt as any cost associated to the treatment of a disease or the topics of need. If you have medical debt, it could be associated to pharmaceutical co-pays or co-insurance. It could be the doctor visits, your deductible or your premiums.

It also includes all the things that occur when you’re seeking treatment that you may not be subject to before. Maybe it’s additional transportation needs, maybe to travel or for lodging, or even the fact that you might lose your employment or get on disability.

It really has a group of things that occur, but typically it’s the shift of medical cost and anything related to the needs of a diagnosis that somebody is simply having a challenging time meeting.

Helen: You’re talking about catastrophic illnesses. You’re not talking about those annoying but ever-growing office co-pays each of us has for more routine matters.

Erin: Patient Advocate Foundation primarily focuses on patients that have catastrophic illnesses, but I would say that medical debt could probably be associated to anybody who has insurance and just has those out-of-pocket costs associated with them.

We’re noticing that there’s been a shift of the cost on the individual who carries the plan. You might have a higher premium now and larger co-pays. You’re subject to a lot of out-of-pocket costs.

Of course, when you have a catastrophic illness it is something that comes to the forefront because you are seeing more doctors and the treatment is more expensive. If you have something like a 20% out-of-pocket responsibility and you’re on chemotherapy, you can imagine where that could escalate to.

Helen: I see it. I feel it. I live it. Each year when our insurance gets renewed, those co-pays go up and the tiered medication gaps are changing. The highest tier is getting ever more expensive.

I’m just thinking about somebody who needs treatment on a pretty regular basis for the catastrophic disease. They could be seeing a specialist. There are so many doctors, treatments and interventions.

Erin: Absolutely. Typically someone who is undergoing that finds that they’re not able to work full time or may have to go on disability, so their income tends to shift or decrease.

If they’re a dual-working family, someone might have to take time off to take their significant other to treatment and they could lose a source of income as well. It is a very challenging time for someone undergoing that type of situation.

Helen: It sure is. I know that PAF is a fabulous advocacy group. Tell us what you do to help with all of this medical debt and where a person would get started when he or she is not only faced with a rotten diagnosis but also all of this medical debt.

Erin: It’s really important when you look at your contract that you understand what it covers. What we do in our case management division when we have calls that come in with medical debt issues is to analyze everyone individually. All of the circumstances, while there might be similarities, are very specific to the person we’re speaking to.

Helen: When you say “contract,” do you mean insurance contract? Is this where we begin and what PAF helps people with? Are you helping only people with insurance?

Erin: No. We provide assistance to patients regardless of their insurance status. They could be uninsured, insured or the new underinsured population who is not providing adequate coverage. Someone might have had a very limited cap to benefits or those types of things. They may simply have a large out-of-pocket cost that creates that medical debt concern they have. That does not matter.

We do try to find ways to insure a patient if they do not have it. There are programs out there now with pre-existing insurance plans through the healthcare reform that is actually an insurance option for someone who is not able to purchase insurance or hasn’t had insurance for at least six months.

Helen: That’s really interesting. I’m really interested in going a couple of directions here, Erin. I want to hear about PAF, what that does, what it’s all about and the services that you offer. Then let’s take a leap from that over to what listeners can be doing, too. Let’s go in two directions.

Maybe we should start with PAF. You can explain to us what your association and organization does and how it helps people. Then we’ll take it from there and shift to what we as individuals can be doing.

Erin: Patient Advocate Foundation is a leading direct patient service organization in the country with our mission to eliminate obstacles for patients trying to access quality health care.

PAF really just helps to safeguard patients through effective mediation, assuring access to care, maintenance to their employment and preservation of their financial stability relative to their diagnosis of life-threatening or debilitating diseases.

We specialize in helping you navigate the resources available out there and connect you with those that are best going to fit your personal situation. Also, we just try to identify the best way to help you in the long term and not necessarily place a Band-Aid on something that’s just going to get you through one day.

Helen: Can anyone access your services, or is it just for a distinct group of our population?

Erin: It is for anybody who has a chronic, life-threatening or debilitating disease. We do have a high population of cancer patients that reach out for assistance, but we have helped patients with things like asthma, diabetes, multiple sclerosis and lupus. There are so many different diseases and over 200 different types of illness that we actually provided assistance for last year.

Since its inception in 1996, we’ve actually provided direct sustained patient services to more than 600,000 patients. We’re celebrating our 15-year anniversary.

In addition to that, we’ve touched millions of Americans through our website, our online chat and our outreach opportunities. Last year, in 2010, we served 82,963 patients, which was an increase of 49.8% over 2009, so it does show that the demand continues to rise.

Helen: Your reach is huge. I’m very impressed by your website. You can just tell listeners right now what your website is, and then we’ll have a link on the web page.

Erin: It’s www.PatientAdvocate.org. Our toll-free number is 800-532-5274.

Helen: Thanks. Obviously, you provide these services. What I was most impressed by is that these are all for free to the patient.

Erin: They absolutely are.

Helen: You’re at a senior level now within the organization. You’ve been involved with it for many years. You were a senior case manager. Could you just make it vivid for us? Can you give an example of how this mattered in one person’s life?

Erin: I can recall a patient that I actually provided assistance to that in the midst of treatment had lost their benefits because of an inability to maintain their hours.

Unfortunately, they had exhausted their family medical leave that protected their job and they rolled into a disability state, which reduced their income. They were unable to afford their COBRA and continuation insurance because the premiums were higher than the income coming in.

When they contacted the foundation, they were in the process of mid-treatment, no insurance and being threatened of no continuation of treatment because the facility could not sustain the patient where they were seeking care at a no-cost situation.

We worked with the pharmaceutical companies of the chemotherapy they were on and the medications as well and were able to secure drug replacement.

We located a facility that had a charity-care option available to them, so we were able to transition the care with the doctor to a facility that could absorb that cost. The medication being reimbursed to the facility meant that they were supplementing the administration in that particular care.

In the meantime, we determined that Social Security disability would be an excellent opportunity for her since her disease was going to progress for at least a year. We went ahead and enrolled her in that program which brought in some source of income when her disability at work was expiring. We also were able to secure insurance after the disability status that allowed her to continue treatment and seek out doctors and such for the future.

That is just the scenario for one particular case. Everyone is very unique in their needs. It just goes to show you.

Helen: I can understand that. It makes it so vivid to me. You were talking about helping tens of thousands of people and hundreds of thousands of people, but to think of that one person as you’re telling that story is so powerful. Thank you for sharing that.

Here’s my other question. We talked about what this association does and its fabulous work, but what can listeners be doing? Listeners cover a broad spectrum. Many listeners are health professionals, public health advocates or literacy teachers and all of us may be sick sometime or know somebody who is sick and want to help. What can we as individuals be doing?

Erin: We can take a lending hand for someone who might be going through an illness that might be challenged or having a difficult time concentrating on what steps they need to do. Often it is a family friend or someone on the outside that can provide that support, have a clear mind on what to look at and help someone navigate the systems.

I mentioned earlier about looking at the policy that you hold, knowing what your insurance policy covers and understanding if there is any annual lifetime caps. It’s really important because if you’re seeking treatment, you need to understand if at any point you are going to be considered self-pay. Will your plan cap out?

Remember, lifetime caps under the Affordable Care Act will be lifted, but some plans still fall under the grandfathered category. That is something PAF can provide assistance with for someone who might be dealing with that.

What is your out-of-pocket responsibility for the person that you’re trying to help? Look at the contract. Do they have a point in their contract where they meet a max where they’re going to start paying 100%?

Collect your explanation of benefits, marry them up to your bills and keep documentation so that you can insure that things are being paid properly and billed correctly and that you simply are paying what you are responsible for and not over-paying by accident. Human error occurs.

Helen: It almost seems like someone needs tremendous reading skills, organization skills and advocacy skills just to deal with this myriad of paperwork that’s coming our way.

Erin: It is a lot to understand. If you’ve never experienced that or had a major illness to have to utilize your benefits like you may be now, it can be a challenge.

We at PAF feel like we need to empower the patients we serve, so we do help them along the process so they can learn and help themselves as they move forward or provide that support to someone else that might be a friend, family or colleague.

Helen: You’re not just helping at PAF but you’re also teaching. I’m thinking about issues of health literacy here as you’re talking about this. I’ve been through some illnesses or helped others who are going through serious illnesses, and you’re flooded with all of this information at the most difficult time of your life.

For Health Literacy, I often talk about reasons people struggle to understand health information. That has to do with issues of literacy, language disability, emotion, culture and the sheer wherewithal of that. That makes learning extra hard out there.

Erin: It absolutely does. For that reason, we have focused on several publications that are written by Patient Advocate Foundation and are available on our website that do focus on topics that are commonly addressed to us. We have things like “Your Guide to the Appeal Process,” and “Your Guide to Help Understand Terminology of Your Plan.”

There are a myriad of different types of publications, not only full-length publications but a series of greater understanding of what your pamphlet reads. It’s very specifically brought down to give you a clear overview of some topics like “What is Usual and Customary Rates?” and “What Does Out-of-Network Mean?”

Those things are really important. A lot of time medical debt can actually be associated with something that you didn’t follow your plan appropriately with.

Helen: Let’s just get back to that. Can people get those publications from your website?

Erin: Yes, they can. We have it, and if you would like a mailed copy we can do that as well.

Helen: We’ll have all of that here. That’s interesting that people might get in medical debt because perhaps they didn’t notice the fine print or the detailed information.

Erin: Is prior authorization required? Are you in an HMO that requires you to stay in network and you did not? Did you go to an out-of-network provider and have a PPO that didn’t recognize that you have a higher responsibility for cost? All of those things can play a factor.

Just because you have a denial of claim doesn’t necessarily warrant that that’s a valid decision. You really should look at appealing anything that you feel has an argument to.

Those are the other things as well. Don’t always accept what the insurance says. You need to look at your contract, comb through it and make a determination or seek help from an advocate, friend or family to help you with that. Absolutely, it’s important to know how your particular contract reads for you.

Helen: This is interesting. I’m looking at the notes I’ve taken as you’re giving us this wealth of information. It’s really for ourselves or particularly for helping others navigate the system and look through that fine print on the policies about things like self-pay, caps or out-of-pockets and looking carefully at those bills. What is a bill and what is just a statement? Read more and deal with the advocacy part.

If people are listening in from organizations or associations, as I think many people might be, are there ways that larger groups can help?

Erin: The other thing I can recommend would be that when you’re looking to help someone who is dealing with this circumstance is not only looking at the plan itself and what carries but the resources that exist out there locally, nationally or disease specific.

There are many co-pay relief programs out there to help absorb the pharmaceutical co-payment. Some of them even offer premium assistance.

If you look at being able to apply for that and offset some of those costs, you might find a little more ease in trying to meet those expenses.

I can give you one example. Our personal Patient Advocate Foundation established a co-pay relief program in 2004 after what we saw throughout our data and the extended calls, continuation of need and the increase. It’s www.Copays.org or 866-512-3861.

Their particular program and website has over 20 different disease categories that it helps. Your guidelines are 500% of federal poverty level. There is a COLA factor that is in that.

There are other co-pay programs and state programs. There are discount drug programs, free medications to those who don’t have prescription coverage or maybe they’re in the gap of their Part-D. Maybe their plan has capped out.

There are certain guidelines under some programs that will help patients qualify for that. There are two websites that are really good to look those up. One is www.NeedyMeds.org. The other one is the Partnership for Prescription access which is www.PPARX.org. Those are really good. They link you to all of those things I just discussed. They connect to the co-pay programs that exist as well.

Of course, PAF is here to provide that support if someone wants to call us.

Helen: I’m just wowed by all of this. When you and I decided to do a podcast on medical debt, I really didn’t know there was this whole system behind that to help people. I just see the headlines that medical debt is a huge problem.

I am delighted and thrilled to know that there is such a strong infrastructure helping others navigate this. I’m impressed. I thank you, PAF and all these other groups that are pulling together to help people.

Erin: Thank you. I also want to mention that PAF really is here to help patients regardless of their disease. While our case management services might focus on those with chronic or debilitating diseases, we do produce some resources that are meant to help those with any type of diagnosis.

We have a financial resource guide and what we call a “National Underinsured Resource Directory.” Through them you actually can select key topics and sort. It’s like an online tutorial, and it will bring you to key resources that are specific to your needs to help close that gap or medical debt.

Those are also available on our website and they’re very interactive. That is something we felt was very important to establish for our patients that we’re serving and those that really could benefit. A lot of social workers or healthcare professionals find benefit in that.

Helen: I certainly hope that listeners do start learning about this and helping others out there. I’m also impressed that almost all the resources you mentioned include not just written pamphlets or a website but also a person to talk to because not everybody learns from the printed word.

Erin: Absolutely. We do outreach here at PAF because we truly believe in reaching out to the communities that really could benefit in understanding what PAF can do and help them so they can qualify for the services and benefit from what is out there already. We just provide an education so that they know what to do.

Helen: That’s wonderful. You’ve given me a lot of reassurance that there is help there. What keeps you up at night?

Erin: I think that it’s just knowing there is so much need and that because of the current state of the economy, while we do provide that assistance and direction, some of them are starting to shrivel up or close because they no longer can get the funding. They may not be able to provide what they used to. That is something that we continue to monitor.

I know we take a lot of our statistics and move them to DC. We have a policy sister organization. It’s National Patient Advocate Foundation. They take our statistics, what we’re seeing, our trending and lobby to try to get out the word and change some things.

We were very instrumental in healthcare reform and showing things like the closing of the pre-existing gap and the nation of out-of-pocket or lifetime caps. Those types of things are really important because that’s what we have been monitoring for some time.

What keeps me up, but is also rewarding, is knowing that every day we provide a service to patients in need. While we’re tackling that situation, we’re doing one patient at a time. We take that information and hopefully change something to make the whole world a better place and have the capabilities that they need.

Helen: You’re doing that here. I think you are in large measure helping all of use help make the world a better place in providing service to those of us who obviously care about this work. We care about others. We see the problems out there. I thank you so much, Erin, for sharing this with listeners of Health Literacy Out Loud.

Erin: Thank you so much for the invitation. It was a pleasure speaking with you today.

Helen: I’ve learned so much from Erin Moaratty and hope that you did too. Health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there feel free to sign up for the free e-newsletter, “What’s New in Health Literacy Consulting?”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, on the mobile app for Stitcher Radio and the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com. If you have an idea for a podcast, topic or guest, please email me at Helen@HealthLiteracy.com.

Did you like this podcast? Did you learn something new and will you take action with what you learned? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.