From Family Caregiver to Advocacy Champion: Avrom Fox is a Hero to Patients and Loved Ones

A social worker and nonprofit agency Director for many years, Avrom Fox was inspired to enter into patient advocacy because of his daughter, who was born with special needs. He advocated for her fiercely for 44 years, since the day she was born, and he fought insurance companies to secure hundreds of thousands of dollars in denied claims. Today, she leads a life of meaning and quality.

Avrom eventually earned an MSW and completed a Graduate Certificate program in Patient Advocacy, but his real-life experience advocating for his own child was his most effective training for patient advocacy. 

Mr. Fox considers himself a specialist in mental health, behavioral disorders, and psychiatric issues, and Avrom views his role to be their champion and serve as an advocate under extremely difficult circumstances. He’s accompanied people to out-of-town residential programs and helped them become stabilized by referring them to the most appropriate providers who can assist them upon returning home. Mr. Fox has extensive expertise in negotiating medical insurance bills and appeals; guiding and directing clients to find the best health insurance and long-term care insurance coverage; helping with Medicare and Medicaid; and assisting with selecting nursing homes, and other long-term settings for patients and their loved ones. 

Perhaps the most intriguing aspect of Avi’s advocacy practice is his vision for the profession and his unwavering belief that everyone deserves an advocate, regardless of location, status, or financial means. Avrom does not value a client based on the ability to pay a fee; rather he views working with a client as his means of inspiring and helping his fellow man.

Transcript:

Host

Avi Fox, thank you so much for being on the Patient Advocacy Now podcast. I'm really thrilled that you're here with us to talk about your experience in the advocacy space. How are you doing today?

Avrom Fox

I'm doing great and it's just as much of a thrilling privilege for me to be with you and I look forward to it. Thank you for inviting me.

Host

Yeah, pleasure's all ours, I assure you. Let me jump right in. How did you get started in the advocacy space?

Avrom Fox

Well, I think that perhaps the most significant way for anyone who becomes a patient advocate to become one is if you have to live the role of patient advocacy because you have a family member for whom you need to become an advocate. That's a school of advocacy which a number of us have gone to.

And yet it's not something necessarily that's so easy. I have four grown children and my third child who's now 44. When she was born and then we subsequently had our fourth child, we were told not to take her home. This was in 1978 when there was no internet, there were no cell phones. There was no way of finding things out so quickly and expediently the way we do today.

And when you're told, don't take her home, and they whisk your daughter away from you within 15 minutes after she's born, and then you see her a day later in a children's hospital, it was appalling and frightening all at the same time. At the end of the day, our life with our daughter began, and we and I became her advocate at that very moment.

and she was born with a very unusual cranial facial anomaly. And I never wanted to hear the answer no. I always needed to find out somebody who knew the answers and at least understood the issue that she had. And it took 10 days for her to be diagnosed because

when she was seen, nobody even had seen her syndrome. The first contact we had from the children's hospital that she was placed in was from the photography department, asking me for permission if we could take pictures of her. Kind of a grotesque concept when you begin to think about that.

Host

That was the first, that was the first call?

Avrom Fox

First contact I had other than don't take her home, the second contact I had was from the hospital, not please come and see your daughter, this is what the diagnosis is, but can we take pictures of her? And I said, no, you can't, not until I further understand what's going on with my daughter and then we'll talk about that. Anyway, that was 44 years ago. And...

25 surgeries later and God knows how much traveling later because it turned out that I was looking and we were looking for a team of physicians that understood this syndrome and had been dealing with it and it turns out that that was one of four teams in the world and this was the youngest team because we figured that we'd be involved with our daughter for a long time. We wound up in Dallas, Texas and she had many surgeries.

many challenges. She had a complete reconstruction of her of her skull and of her face and of other extremities of her skeleton. Our primary concern was not just that, but we were concerned about the quality of her life, her ability to have a life, her ability to achieve some level of independence. And that was really at the top of the agenda as well, practically from the minute she was born.

Fast forward 44 years later, our daughter lives a meaningful life. She lives in a supportive living apartment in Brooklyn, New York, because we're of the Jewish faith and we wanted her to be in that kind of an environment. I was told that there was no way that a Chicago resident could ever get her into a New York City-based facility. It's not a facility, it's an apartment. But against all odds, she's a good person.

She's been living now for 12 years in New York and Brooklyn in an apartment with several other women. She has a job, she has a life, and she's a happy person. And that's how you go to the school of patient advocacy by dealing with it on a basis like that. And that's what ultimately motivated me to think about going into the profession more formally.

And I started it. I began about 10 years ago to look into it. I went back to school. I got a graduate certificate from UCLA in patient advocacy and here I am doing this part-time and Very fulfilling very inspiring and incredibly important

Host

What's your role as an advocate? I know there are so many different types of advocates and you kind of have to wear many hats but where do you find people calling you and your specialties lie?

Avrom Fox

Hey John, that's a great question. Some advocates don't give you a specific answer to that question. Rather they basically respond by, I am an advocate and my primary role and responsibility is to help people navigate our broken healthcare system.

And in doing so, I want to be your champion. I want to hold your hand. And I want to work with you and your family to overcome the obstacles and the barriers in our horrible system. But that's not a good enough answer. That's a very general statement. My answer is that I, as I've been involved in this now for a number of years, realize that

Nobody can literally take on every case, regardless of what its scope is. There are people who do that, but I believe that nobody necessarily has the wherewithal and the skill to take on every case. And all of us have to recognize what are our strengths, what are our weaknesses, what are we good at, and what is somebody else better at. One of the greatest strengths that you have to have as a patient advocate

is to know what you can do and what you can't do. And so I get inundated with phone calls because I have a website which appears pretty well. And I don't turn down a call. I always listen to what the person has to say, no matter what. I always listen. And I always tell the person as they begin to speak, I'm going to listen to your issue, Mr. Smith, and if I think I can help you.

will go further if i don't think i can help you all try to find somebody who can people appreciate that you're transparent from the outset so the answer the question is is that uh… based upon what i'm doing now

I'm very selective, I don't take every case. The cases that I'm currently involved in tend to be very complex, multi-dimensional cases involving people who tend to be medically very, very fragile, with challenging, the scopes of their health tends to be very challenging. The last two cases I've been involved with are people who are in...

conditions that would probably be considered life support. And so you'll have all the ethical components of those issues that a family begins to wrestle with. And so my role as an advocate is to try to help families wrestle with my current client who's laying in a long term care facility and who is in a position in which it's extremely difficult for a family to determine.

what they should do with this man. And my job is not to tell them what to do because that's not what advocates do. My job is to help them understand what their options are. And once they understand what their options are and determine what direction they wish to go in, my job is to help them get there and advocate for the patient in order to enable him to get to where the family wants him to go.

Host

Why do you think that we even need that? What's wrong with the medical system where the options aren't made clear?

Avrom Fox

The medical system is, as I said before, John, it's so broken. First of all, just take the word accessibility.

And let's don't even talk about accessibility for a moment in the context of patient advocacy. Let's talk about accessibility for you or me. I've been trying now for two days, two days, to get in touch with my personal physician about a mundane matter regarding some medication that I need to have. It's been two days. And this...

is a fairly large medical team, medical group, and they have an internet communication system and you send the messages. Can I call them? No. Can't even get to the doctor. Doctors don't talk to patients today unless you have an appointment to speak to them over Zoom and or in person. You have an appointment. You can't generally even get to the desk in the office where the doctor is.

because these doctors today, the small practices have all been bought up. So they're parts, they tend to be participants in massive practices. So you get to a customer service center. Could be, you know, it's like calling a factory. It's like calling a warehouse to find out when your delivery of a, of a new TV you bought is going to arrive. That's how you feel when you're communicating. And when it's all said and done, rarely do you get to the doctor. And rarely is there any kind of humanistic interaction.

And so here I am, a patient advocate who knows how to communicate, and there's absolutely even for me no accessibility. Imagine a situation where a family, a man is, has no family. He has no money. He's extremely sick to a point where he's not even considered to be necessarily mentally competent. He's not even cognitive.

he has a nephew or he has a cousin he has a friend or sister or brother who's now reaches out to me and says hey this is the situation with my uncle we need help what do we do and then you start asking them have you spoken to this person have you spoken to that person and the answer is is i've tried i've tried i've tried but when i go to the facility nobody wants to talk to me when i call the facility i can't get anyone on the phone and this is a relative of somebody who can't talk

And so he says, I need your help because I don't know how to work the system. And that's the sad brass tacks reality of our medical system. It's in a sense, the human component of it is gone. And the medical system in a sense is no different than any other major bureaucratic system within a

you know, a structure that you have to try to work within. And it's nothing less than frustrating and unacceptable.

Host

When you speak, when you finally do get to speak with nurses and doctors and physicians on behalf of your clients, do you get that same sentiment that the system is broken from their side or not so much?

Avrom Fox

Very often when you're speaking, there's two ways of communicating with a provider. If the conversation takes place over a telephone or over a Zoom or over a technological device in which you're not physically in their presence, in some ways you may have a better chance of some...

attention or you may have a better chance of thinking that the person is listening to you because that's what they're doing at the moment. Whereas if you're in a doctor's office or you're in a hospital room, generally the doctor's got one hand on the wall because he's ready to go to the room next door. He doesn't want to be interrogated. He doesn't want people to bother him and impose upon his, you know, his particular...

you know, wrong with this patient because he's already onto the next room. And that's really very, very sad, but it's true. And so unless you're willing to be, I would use the term, diplomatically assertive.

There's just almost no way you can get anywhere in terms of communicating with health care providers. You have to be a nag, otherwise you're going to get nowhere.

Host

I mean, I see this firsthand. I often will go to the doctor or I'll go with my kids. And in the way with my practitioners, the hand's not on the wall, but they have a computer in the room and they're typing on the computer and you'll get an occasional look at you, but they'll listen to you and then they'll take notes and it feels like they're treating the computer half the time as opposed to you as the patient.

Avrom Fox

John, I want to tell you a quick, uh...

thing that's really quite remarkable. I was asked by the head of the Greater National Advocates to write a blog for GNA which I recently wrote and the title of the blog I don't remember exactly the title but it's something like patient advocates should be like Dr. Marcus Welby.

Dr. Marcus Welby, there was a big television show in the 60s and in the 70s about this family doctor named Marcus Welby who spent his life with families making house calls. He became almost an integral part of his patients' lives and they became an integral part of his life. And there was no limits. There were no boundaries. There were no looking at the clock.

role of Marcus Welby MD, those kinds of doctors are gone, if there are history. Because doctors today have to see, you know, particular PCPs, they're charged with seeing, you know, six patients an hour every ten minutes. The next one, the next one, the next one. And the fact is is that I view my role as a patient advocate as the replacement for Dr. Marcus Welby. He doesn't exist anymore.

But my role and my goal is to become the Dr. Marcus Welby, even though I'm not a doctor, I'm a patient advocate, for the family, so they can at least feel that there's somebody there who is completely and totally focused on them, their healthcare, their issues, and feel that there's somebody there that has enough commitment to them that he's gonna go above and beyond the call of duty to do everything humanly possible to help that person, and at least to listen.

And that's how I would characterize my own particular approach to what I do.

Host

I think it's a beautiful approach. I mean, the follow-up question that I think begs to be asked is, why has the system turned into the way it is?

Avrom Fox

Well, it's unfortunate that you even have to ask the question, why is the system turned into the way it is? And the answer is quite obvious, because the system is controlled by factors which are controlling so many other aspects of our society. And those factors, in my opinion, are minimally two to threefold. Number one, money.

That's to say that people who are poor, who in the best case scenario are recipients of Medicaid, if they're lucky...

They are so badly discriminated against because they're poor. It's amazing how many doctors do not even want to treat somebody who has Medicaid. And that's a very significant percentage of the population, so money. Second factor, I think, is basic fundamental reporting and regulatory requirements. The amount of time that the health care provider must spend

terms of documentation, in terms of following various kinds of regulations, it just takes away from the time that they should be spending on a personal level with the patient. So there's money and there are regulations. And the third factor, which is very, very, very disappointing for me even to have to consider, is I think the politics that are going on in our country today. Because depending on which

particular party, you know, is more powerful or in control in a certain state, that may very well dictate some of the advantages and disadvantages that people have in terms of accessibility to healthcare based upon the political perspectives of what goes on in a state. Let me just make one final comment.

I have a client that I've had for seven years. It's almost unheard of. Most clients last three months, six months, nine months. You do a, you know, they have an issue, you try to help them with it. Maybe you have an ongoing relationship with the client. They need ongoing maintenance, et cetera. But this is an unusual case that's gone on for seven years. And it's a case in which a family has gone from having no money, nothing.

no accessibility, no money, and I was their advocate who was fighting to try to achieve access and get them help to a situation where because of some...

Avrom Fox

Fortunate things that happen to these people within the legal system. They now have unlimited money Money is no longer an issue And so I'm still their private health care patient advocate and I've gone from years of begging for help Because of the lack of accessibility to a situation now where I can waive all the money in the world before every single doctor And every single provider And I want to tell you something it isn't significantly easier

to find health, it is not significantly easier. It is not. And I'll just give you one example. This particular individual that I've been so involved with, we finally concluded once the financial situation was no longer an issue, that she needed a primary care provider who was accessible.

Host

It is not.

Avrom Fox

I just told you about my story. I can't even get to my doctor through a network, and I've been going to this doctor, and she's a wonderful doctor, but it's accessibility. But when somebody is medically challenged and needs accessibility, you can't compromise. And so the only way today that you can buy accessibility is if you can afford it. That means you have to reach out to something called concierge doctors.

Host

Yeah.

Avrom Fox

A typical internal medicine doctor has 2,000 patients at any given time. That doesn't mean that they're always seeing 2,000, but over the course of their book, it's got 2,000 patients. A concierge doctor may have 200 patients. But guess what? You pay them a significant fee per year to have instant accessibility to that concierge doctor.

who will always be available, always see you, always talk to you because he's only got 200 patients. That doesn't mean the quality of his medicine or his training is any different, but it means that he is accessible. Isn't it a sad state of affairs in our country that somebody has to go out and buy accessibility? And most people, unless they're much older, somebody like me can't afford it. Why should you have to put up with it?

But at the end of the day, most of the people that go and buy Concierge's positions are people that are older, because they're so fed up with the bureaucracy they just can't take it anymore and therefore they're willing to go out and do this. And there is a shortage of Concierge doctors because more and more people realize that it's a luxury, which now in a certain sense for some people is becoming a necessity.

Host

Wow. Yeah, it seems like a cottage industry I know very, very little about. Um.

Avrom Fox

Well, I've grown to know a lot about it because I've had to access it for people that I feel could be beneficiaries of it. And I've been very fortunate for those few people that I've directed as a patient advocate in that, you know, to that kind of position to instantly gain the accessibility that we needed in order to help them.

Host

Do you see that becoming more mainstream? Is there a financial world where it can be scalable? I mean, we already have a shortage of doctors, insurance.

Avrom Fox

John, I don't think it's a financial world that can be scalable. I don't. And let me just tell you one other thing.

Host

Yeah. Yeah. That's it.

Avrom Fox

one of the areas within the field of healthcare.

which is absolutely so broken that it's almost beyond repair, is an area that I do focus on. And that's called psychiatric and behavioral health. People who have mental and behavioral disorders, in my opinion, are so badly discriminated against, because psychiatrists today, for example, they don't take Medicare, by and large.

Almost none of them take Medicaid. There aren't enough of them. And so a person is suffering with major mental health issues. Major mental health issues. They're manic, they have bipolar, they're, God forbid, you know, a risk to themselves or to others. Where the hell do they go? They wind up in inpatient, they wind up in emergency rooms where some of them can sit for three, four, five days.

almost tethered to a gurney in an emergency room because there's a total shortage of beds in inpatient psych units. And what happens to these people while they're in ERs? They're abused, they're often sedated, and if and when the great opportunity comes for them to be admitted into an inpatient psych unit, there are so many factors that a family has to cope with and figure out.

that most people don't even vaguely even know where to begin. So I am involved and quite focused in that area of patient advocacy. Because I really feel so badly my heart bleeds for people that are suffering because of that major, major, major rupture in the system.

Host

It sounds like you find yourself drawn to the cases that are more difficult, that have true neglect in the system. Am I accurate in assuming that?

Avrom Fox

I think that's very accurate. I mean, I'd say that it's a heck of a lot easier as a patient advocate to get a phone call from somebody who is looking to buy a Medicare and they're looking for an opinion on what kind to buy. Or somebody was just diagnosed with a some kind of an illness and they're not sure which doctor they should go to. Or somebody, let's say, was told that they're

surgical procedure was going to be covered and they went and had the surgery and they're now fine and dandy and they're getting billed from the insurance company when they were told that the procedure would be covered. And so patient advocates, including myself, spend time on dealing with insurance issues, which have no emotional component to them. You just have to deal with the bureaucracy of...

insurance companies, hospital billing units, and you have to have a fundamental strategy on how to resolve that kind of issue. And those are not necessarily easy cases, but they don't have the emotional component and the traumatic component that can go along with, you know, a guy is lying in a hospital bed right now as we speak and the family doesn't know.

how much longer he's gonna live, what to do for him, where to put him, do we do this for him, do we do that for him? I find those kinds of cases very, very, very challenging and very candidly I would say to you, John, that...

Host

Right.

Avrom Fox

Many patient advocates wouldn't even conceive of taking on some of the cases that I've taken on. That doesn't make me special. People wonder why I sometimes do some of this. And I do it because I don't want these people to be deprived of the opportunity of having a patient advocate. That's not to suggest that I'm some kind of a miracle worker. But I think that if.

Host

Right.

Avrom Fox

There's a very challenging situation. I don't think it's fair just to walk away because it may be hard for you. That's just the way I view it.

Host

Yeah. I have some experience in the psychiatric world as well. And I mean, it's incredibly frustrating. Half the time people don't even get a diagnosis for weeks or months on end. And so the idea of even prescribing medication is just impossible because there's no diagnosis and they're just left, you know, trying to find a provider online. And it's like,

To them it feels like throwing a dart in the ocean trying to hit a bullseye and no one told him where it is. I mean, it's ridiculous.

Avrom Fox

It's completely ridiculous. So for a guy like me, one of my strengths could also be characterized as a major weakness. And the strength is, you know, I'm extremely empathetic and passionate and caring and loving towards my fellow man regardless of who that fellow man is. And number two, the weakness is, is I often have a hard time saying no.

Host

Yeah. Yeah. And if you're taking...

Avrom Fox

I can't say no, that's just, that's me. I can't say no, that's just, that's me.

Host

And if you're taking every call, that probably means a overworked Avi.

Avrom Fox

well many of the calls i take or just calls in which i try to help the person over the phone and i do it just as an act of uh… humanity i mean i i i have uh… reached a point where i'm doing patient advocacy for i only take on a certain number of cases at any given time if the family absolutely does not have the financial wherewithal to provide or pay whatever the fears uh… i don't

Host

Right.

Avrom Fox

plenty punches, I will do it for nothing. I'm not broadcasting, hey call Avi Fox, he's your free patient advocate, but it's disturbing to me and I'm hoping that with a group of highly motivated leaders in the field of patient advocacy, young dynamic people, that someday patient advocacy will be considered to be a needed service.

Host

Right, right.

Avrom Fox

and will be covered by insurance, will be covered by Medicare. And so people who are patient advocates won't have to worry about are they gonna get paid or aren't they gonna get paid, which candidly many of my colleagues, this is their livelihood. When you get to be...

you know, older and you've worked for many, many, many years in various areas and you call yourself living in a state of semi-retirement, which is what I'm doing. I'm occupying my semi-retirement in a way by working as a part-time patient advocate, which in many cases requires a lot more than part-time, depending on the circumstances at any.

Host

Yeah. Yeah. It sounds like to get there, we're going to need a lot more patient advocates though. If we're going to get to the point where we can actually provide people with one, we're going to

Avrom Fox

John, my sense is that since I went into this field and I went in about nine years ago, I'm sure the field formally probably hatched before that, maybe 12 years ago, but formally as a field, as a profession, called patient advocacy or called private healthcare patient advocacy or called healthcare advocacy, depending on what the title is.

Host

Uh huh.

Avrom Fox

I would say to you that today in the year 2023, that there could be, in the whole country, somewhere between 1,000 and 1,500 people who are formally operating and working as healthcare patient advocates. That's not very many people.

And I can tell you that in metropolitan Chicago, which is a city of over 7 million people, there are patient advocates here, but I can tell you that in the space of psychiatric and behavioral and mental disorders, I don't think there are three, four of us total in metropolitan Chicago that will even take a case. And that's very, very, very disturbing.

Host

So I guess you're, you are broadcasting a need for more advocates. Maybe you're not broadcasting calls for yourself or, you know, free advocacy, but, but for more people to step up and answer the call.

Avrom Fox

John, I agree with that. People have to step up and answer the call. People who already are advocates must answer the call. And there is a call, a major call, that has to be put out there for people who aren't advocates who think that they can make a difference to go into this field. The fact is, is that it's a very, very, very challenging field. Because it's not a given that you're going to get a, that somebody who needs to.

Host

Mm-hmm.

Avrom Fox

be a patient advocate and this is their now becomes their primary profession need to pay their their mortgage and uh… you know their overhead perhaps uh… you know they have children that they need to provide for it's not a given that you're going to be guaranteed that you're gonna have great amounts of income to be able to do those things and the fact is is that uh… until

patient advocates become a group of people whose services can be reimbursed through insurance, be it Medicare, be it whatever, it's going to be very, very, very difficult for there to be enough patient advocates to service the needs of people who need us. It's just not going to happen. It needs to.

patient advocacy as a service to their employees and charging you know five dollars a month as part of their you know uh… as part of their monthly benefit package that they have to pay for whatever it's a concept and it's not a new concept but it has not yet uh… it's not it is not uh… materialized not that i'm aware of it

Host

Last words, do you want to leave people with if they want to look into it or if they want to get in touch with you even if they feel like they have a psychiatric or a very complex case that you might be a perfect fit for?

Avrom Fox

Well, my last words are first of all In my religion, and I'm Jewish, it says that he who saves one life, it's as if he saved the whole world. Now, I'm not suggesting that as a patient advocate I'm in the business of saving lives, administering CPR, you know, administering paddles to bring people who are coding back to life. That's not literally what patient advocates are doing. But for many.

clients that we have. In a sense, we are helping to sustain lives because without the patient advocate, so many people are completely lost and they don't know where to go and what to do. And so I think that anybody who's looking for a patient advocate needs to recognize that we all know how to go to a computer, we all know how to go to a browser, we all know how to type in Chicago patient advocate or Florida patient advocate or California patient advocate.

or greater national advocates, which is one of our major national associations, GNA Now, it's not impossibly hard to find patient advocates. Go to the GNA Now directory, which is free. It's gratis. And it just guides you through the process of trying to identify and find a patient advocate. And if you fail with the first one, you have to really aggressively...

the prospective client who's in need must transmit and communicate with the prospective patient advocate, let's say it's me, how much and how great their need is. And if I am not able to help them, my message to my colleagues is that my responsibility is not to shun them away, but to find somebody that can. And last but not least, that doesn't even mean...

that it's such a bad idea, even if it means that you may have to spend some time on a pro bono basis, considering who we are and what we do, if we can't provide pro bono patient advocacy to people who are in desperate need, then who will? And I'm not suggesting to all of my patient advocacy colleagues that call Avi because I'm the pro bono guy, but I think all of us need to be aware of the...

great need and need to be as helpful as we possibly can to people who contact us. So sure, anyone who needs a patient advocate in the Chicagoland area, you can find me in the directory or call me, you know, find me at chicagopatientadvocacy.com and I will certainly guarantee that I will listen to you.

Host

Avi Fox, thank you so much for your time, your wisdom and sharing all your candor about the medical system and how to navigate through it.

Avrom Fox

Gotcha. Jon, thank you so very, very much.