Listen to Audio (51 min.)
Please introduce yourself.
My name is Jim Shea. I was diagnosed with HIV in the late 1980s.
Tell us a little bit about your treatment history and what led to your onset of lipoatrophy.
Well, I'd been on HIV drugs since 1986. The [facial] wasting occurred over a period of time, and it became really bad in the last couple of years. My doctor recommended treatment with Sculptra [poly-L-lactic acid, New-Fill], which he had been involved with in the testing process. When it was approved, he told me. So I attempted to apply to my insurance company for coverage to receive treatment. The insurance company at first said they didn't know what I was talking about. They had never heard of the treatment. They said it was not approved. We went back and forth on phone calls for a couple of weeks, until I sent them the FDA approval notice that I got from the Internet. At that point, they came back and said that the procedure was considered cosmetic, and it was not medically necessary, and therefore, it was not covered.
So this was all before you actually went to have the procedure?
Yes. I knew that I was going to have to get what they call "prior authorization," just from my experience with dealing with the insurance company, to have this done. I knew that it was a pricey procedure. I knew if I just went ahead and had it done, chances are I would have wound up never getting reimbursed for it. So, I decided to go directly against the insurance company to get the coverage for it.
What year was this?
This was last year. It was 2005.
When did you first experience lipoatrophy?
It's funny that you ask that, because I'm not really sure. It seems to be a gradual process. Of the people that I have talked to since -- some aren't even aware of it. I don't really think I became aware of it until it became quite severe. People started noticing it and saying, "Oh, you lost weight." It's a funny process, because once you become aware of it, you become increasingly aware of it.
What were people saying to you?
People would ask me if I had lost weight. My doctor, actually, was the first one that brought my attention to it. He said, "You look like your face has suffered from considerable facial wasting, and there is something that we can do to help that."
I think what it is, is over time you're used to looking at yourself, and you don't really notice it. Then once somebody starts, once somebody mentions it to you, you start looking at yourself, and you're saying, "Oh my God! I have these big craters in my cheeks."
Had you been aware that this might be a risk of a side effect of the medication?
Well, I had mostly heard more things about buffalo hump and fat deposits, rather than the wasting effect. So I wasn't really all that aware of it at the time.
What combination therapy were you on?
I had been on all of the combinations. I think back then what was causing it -- I think I was on Sustiva [efavirenz, Stocrin] -- it's hard to remember.
Have you been on d4T [stavudine, Zerit]?
Yes, I was on d4T for a very long time. When I started taking meds, there was AZT [zidovudine, Retrovir]; that's all there was. So, I have been on just about every drug combination that there is.
Yes, all of them.
Did your doctor explain to you what he thought was causing it?
Well, he felt that it was obviously caused by the drugs, but by that point, I wasn't taking any of those drugs anymore. Other doctors -- I've gone through a series of doctors -- and I would never say that anybody specifically warned me about facial wasting. When I started taking drugs, if somebody said they could have caused it, I would have had to take the drugs anyway, because I had no choice. Coming through this from the beginning, you really did not have a choice [regarding HIV medications] like people do today, where you can take a different combination because of different side effects.
You pretty much just had to burn through every drug as it came along.
Exactly. I used to. I mean, I'm a little bit ahead of that now because the combinations are working better. But it was basically, as soon as anything was released in even pre-approval format, if you could get your hands on it, you took it. So, I took Crixivan [indinavir]. I've taken just about everything that's out there, except for the things that have come along in the last couple of years, because the combination that I'm on now seems to be working, and it's fine. I haven't had to change drugs in a while.
That's great. So, your doctor brought it to your attention, and how did you feel about it?
When he first mentioned it to me, I looked, and I didn't feel that it was that bad. Then over time, you keep looking at it; it gets worse. It got to the point where I realized that I wasn't even looking at myself in the mirror anymore, because I just didn't want to see what I looked like. I started looking around and seeing other people that had it, and it just -- it kind of has this snowball effect on you after a while. When I spoke to my therapist about it, she, in fact, said that it was having other effects on me that I wasn't even aware of, to the point of becoming delusional about people looking at me and not sitting next to me on the subway, and things like this that were probably not at all true. But these are the things that happen to people when they're walking around with this [lipoatrophy].Much of this she documented in a letter that was included in what's called an "external appeal" that I did, because my insurance company would never appeal it.
OK, so let's go forward to: Your doctor recommended that you have this Sculptra procedure. You contacted your insurance company.
Right. They said, no, it wasn't covered. They really did not give me any alternatives, other than writing complaint and grievance letters. But I had remembered a little thing called an appeal process. They don't bring it to your attention, but there is a standard appeal process when you're denied coverage from an insurance company, and it is monitored by the New York State Insurance Department.
So the first step in that is to get a written denial from the insurance company, which is not always easy to get, because they don't want to put everything into writing. But through writing letters, I finally got a written denial saying that the procedure was cosmetic, and not medically necessary.
From there, I got a letter of medical necessity from my doctor, and I put together a package of articles that I had found on the Internet from various sources, explaining how the procedure worked, how important it was, and how it was improving people's quality of life. Anything I could find I included in the appeal.I sent the appeal in, and it came back within a week and a half, which anybody that's familiar with insurance companies knows that never happens. Of course, it was denied again. So at that point, I sat back and I said, well, there's something called an "external appeal." For the external appeal, actually, New York State handles it, and they send it to an outside -- I don't want to say uninterested party, because of course, it's people in health care -- but there's nobody from your insurance company involved in the process. In fact, my appeal went to Maryland. It wasn't even decided in New York.
That came back, and the dermatologist that made the decision said that it wasn't cosmetic, and it was medically necessary, but in his experience, people only needed four treatments. So he approved four treatments in the first year. My doctor had said that I would need 10 to 12 treatments.
Between the time of filing all of the papers with the insurance company, I became aware that Dermik, the company that makes Sculptra, had started a compassionate use program. I qualified for that to get the material for free. So, then I just had to negotiate with my doctor for the fees to administer the treatments. They gave me six treatments, which brought me up to ten. At that point, my face definitely looked a 100 percent better than it did in the beginning, but he still felt I needed two to four more treatments.
So the external appeal to the insurance company approved four, and you went ahead and had those four?
I had those four.
That was last year?
Yes. It went the whole year. I basically finished my treatments in December of 2005.
Now, you mentioned something about your therapist actually documenting the psychological aspects of this?
Yes. The external appeal, when it came back -- the doctor who made the decision said that the effects that [lipoatrophy] has on a person's well-being -- mental well-being and things -- were the reasons why he approved it. It was definitely tied to the letter from my therapist. Which leads me to believe that, for something like Sculptra, the psychological effect that it has on a person is more important to get it approved than, "They need to make this person's face look the way it used to." Because then they say, "Oh, it's cosmetic."
Now, if you don't mind my asking: Can you describe what you think your therapist wrote in her letter?
She wrote in the letter that -- now, I have been going to this therapist for over 10 years -- and she said that she had seen changes in my personality, where I was becoming withdrawn. I went from what she called a very social person to someone who just stayed home and avoided social contact with people. She also stated -- and when I saw this in the letter, I actually had a strong reaction to it until she explained it to me -- she said I was starting to have paranoid delusions. Because I was reacting to things like getting on the subway and [having] people looking at me, and sitting down and [having] the only seat available on the train next to me, and nobody [sitting] in it. I was saying that this was all because of my face, that people were looking at me and saying I had AIDS and they didn't want to come near me.
This sounds like pretty strong stuff. When I read that, it upset me. Then, when I thought about it afterwards, I said, you know, she's right. It can have some very, very strong effects on a person's mental health, on the way they feel about themselves.
You mentioned before that she was documenting things that you actually were telling her, but that you weren't really that aware of; or you weren't adding it all up.
I was aware of some of it; but I don't know if I was consciously aware of it. I did become much less of a social person. I wasn't going out with friends as much. Like I said: It came to the point where I didn't even look at myself in the mirror. It took her saying that for me to actually put it together in my head and say, "Oh, my God, this is what's happening."
That's extremely upsetting.
I'm sure your reaction is very common.
I have actually been talking to somebody recently who is going through the treatments, and he also has very severe facial wasting. It was very interesting talking to him, because he was [experiencing] the same thing, where he wasn't really aware of it, and then somebody mentioned it to him and it became this real sore spot. It kept building and building and building. I think that's pretty common with people that have this.
Of course, you mention it to your friends and they'll say, "Oh, it's not that bad." Then, you look, and you're like, "Well, what do you mean, it's not that bad?"
Hearing that it's not that bad is not comforting.
It's not that good. But people don't know what to say, and they don't want to hurt your feelings. They don't want you to think that they're judging you because of the way you look.
Do you think that you were in denial about it? That you weren't really seeing it for what it was? Or that it was just so gradual that you weren't aware of it?
At first, it was gradual, and I wasn't even processing that it was happening. Then, after I realized what was happening, I was in denial for a while, because there was nothing that I could do about it. So, it was sort of like: I can't do anything about this. You have got to suck it up and go on.
There was nothing you could do about it because you weren't aware of the possible reconstructive procedures available?
No. I think there have been other treatments for it, but Sculptra was the first thing that was approved, and it was the first thing that I had really read a lot of good things about. It was also the only thing that there was any kind of coverage available [for], if you could get it. After not working for 10 years, I can't afford to spend $10,000 to $15,000 trying to have my face fixed. People that are working, that are lucky enough to be able to do that, are doing it. But you know, there was no way I could do anything like that.
So, there was a period of maybe a couple of years where you couldn't do anything, and you were just having to suck it up?
Yes. There was nothing that you could do about it. So, it was sort of like, okay, this is the way I look. You know? What am I going to do? Again, for me, I do volunteer work, and that's the only thing that's saved me a lot of times -- is that I'm dedicated to the work I do. It gets me out of bed in the morning and out of the house and do[ing] something. If I didn't have that, I don't know what I would have done. I probably would have just totally shut down and stayed home all the time.
How did it make you feel to know that Sculptra was available but that your insurance company was not going to pay for it?
It made me feel determined that I was going to beat them. That comes from a history that I have had since I started with this work the first time. The first battle I had with an insurance company was when they tried to raise my premiums by 70 percent per month.
When was that?
Back in 1999.
Did that have anything to do with HIV?
No. It was what they call "direct pay insurance"; it's people that buy their own insurance, which is a market of people who have basically worked for 20 or 30 years and have private disability benefits, and have retirement funds. So, they don't qualify for Medicaid. They don't qualify for ADAP [AIDS Drug Assistance Program]. They have to buy their own insurance. It's a smaller percentage of people with HIV, but it's not just people with HIV. They claim there are 100,000 people in New York State who actually buy their own insurance. It's a very hard group of people to find, because they're not very vocal.
But anyway, in those days, if they tried to raise rates more than 10 percent, they had to have a public hearing. Somebody from GMHC [New York's Gay Men's Health Crisis -- an AIDS organization] contacted me and said, "You really have to testify in this hearing." Of course, at that point, I wouldn't speak before more than two people, because I never was into public speaking. She convinced me that I should do it. A group of us, a panel from GMHC, spoke that day. After the hearing was over, the rate was rolled back from a 70 percent increase to a 10 percent increase.
So, 10 percent! I think that was the biggest high I ever had in my life. It just blew my head off.
That convinced me that, yes, in fact, you can beat an insurance company. That was basically how I started getting involved with fighting insurance companies, and saying no. You know, [even] if they say no to you, you can get what you want. It's what inspired me to take this other stuff on.
The feeling that ...
... that you can make a difference. You can change things. You don't have to take no for an answer.
I can do something about it. But then, once you have to start dealing with the psychological issues, it's tough, and it brings a lot of crap up.
At that time, you still didn't know whether you were going to be able to really fix the lipoatrophy, right?
Right. I just always kept telling myself I was going to win. I was determined that this was one thing that I was going to -- you know, if I did nothing else, ever, I was still going to prove. Because it wasn't just me; it was everybody else. The little bit of that that I operate on is -- what I do is great because it helps me; but it also helps other people. A lot of people said to me, "Now, don't get too ..." -- but I said, "I'm going to win this." I don't often do that with things. Sometimes I tend to be a little bit on the pessimistic side. But I was just determined that I was going to win this.
I got an insight into what [doctors] go through, too.
In terms of the kinds of paperwork they have to file for a single patient?
The paperwork they have to do, and what they have to deal with [in terms of] insurance companies. And believe me; they have it just as bad as patients. I mean they have to deal with the same crap. The insurance companies do not treat them any better than they treat us.
Was your therapist getting reimbursed for her help in the appeal?
No. She just did this because she knew how much it meant to me. This woman -- I've been going to her for, like I said, over 10 years. In fact, she was one of the people who at first said she didn't understand why I wanted this so badly, because she didn't think I looked that bad. She was another one of the people that, after I had the treatment done, was like, "Oh, now I see why you were so determined to get it." Because that was another case of somebody that saw me all the time, and just didn't really notice the difference. Plus, she's an elderly woman, so having wrinkles is no big deal. But she was saying, she could not see why I wanted to have this done. Then halfway through it, she said, "I knew that even though I didn't understand why you wanted to have it done, you must have had a good reason for it."
But, the observations that she had made were true, but she just couldn't figure out why it was happening. So it was an interesting process for her, too.
Can you describe what your process was? Was all of this done over the phone, the computer, through letters?
It's mostly done through letters. Because insurance companies want to do everything by the phone. But if you do things over the phone with an insurance company, nothing is documented.
Like I said, even getting this initial letter of denial -- I called up and asked for it -- they'll say, "Call this department; call that department." They give you the runaround; they don't want to give it to you. The only way I got it is, I wrote to their Clinical Appeals Department and said, "Okay. I've been denied this service on the phone. I want to appeal it." Then, they had to answer the letter.
So most of the appeal process is done by phone. I did a lot of research, of course, on the Internet. So I would say it's all mail and phone.
In terms of dealing with human beings at the insurance company, there was absolutely no power of persuasion, right?
Yes. Dealing with insurance companies can be a very frustrating experience. The people are trained to not give you too much information, basically. The last time I called for an address, I was routed to six different people. I still got the wrong address, because when I got the thing back from the appeal they said, "And Mr. Shea sent it to the wrong address." You know, this is very common with insurance companies. So dealing with them on the phone is a very frustrating experience. I have been through several major things with them and the phone portion of it is always very, very frustrating, until you get to writing things, and it's documented. Of course, any correspondence that I have with an insurance company, I automatically send a carbon copy to the New York State Insurance Department, and they monitor them. So, your things don't get lost, and things happen.
You send a carbon copy to the New York State Insurance Department?
The [State] Insurance Department, because they oversee the insurance companies in the state. Any time you write them a letter, they handle it as a complaint. They write a letter to the insurance company, and the insurance company has to answer them, as well as you. So, it just -- it prevents anything from falling through the cracks. It's a safeguard.
You got those four treatments, and then you found out about the compassionate use, so you got the product for free. Then you negotiated with your doctor?
Is it your doctor who actually did the treatment?
Yes, it is my doctor.
So, he's trained to do that?
He trained. He did several things. He actually went to France and studied with one of the people that came up with the initial -- because I think it originally came from France. I think he was there for three weeks, or something, and he actually studied with the people that came up with the stuff, to learn how to administer it. Which I was very impressed with.
Can you describe a little bit about the process? I have heard that you go in with pictures of how you looked before.
Yes. You bring pictures in if you have old pictures of how you used to look. Then, they'll take pictures of the way you are now. In my case, we took pictures every time I went for treatment. Before I took a treatment, he would take a series of pictures, so that you can measure the difference in how it improves over time.
The procedure itself: There's one very painful part of it. The rest of it isn't painful at all. It's administered through injections in your face, in your cheeks, mainly. The anesthetic that they have to put into your face hurts a lot when it goes in. So, you have these -- it's usually about six shots, three in each cheek, that burn and sting. It's very uncomfortable. In fact, some people stop the treatment because they can't stand it.
From the anesthetic?
Yes. Then, once that kicks in -- and it's only when it's being injected, so it's a short spurt of when it's going in; it just burns -- and then it stops immediately. It's not a long-term thing, but it's these six jabs of extreme pain, basically. I don't know how to say it. Because my doctor had said he had patients that brought people in to hold their hands and to get through that.
After that, your face is numb. I don't know how many injections; it's quite a few injections each time, all over the particular area that they're working in. But you don't feel any of that. After treatment, I had actually no adverse effects at all. The first treatment, my face was a little bit red and puffy for about two to three days. After the first treatment, it used to be by the day after, you couldn't tell I had anything done.
So, you can go to the office and have it done and go out to dinner, and go about your business. It's not something that there's any recuperation afterwards, or anything that stops you from going on with your life.
After the first treatment, could you see a result right away?
You do, at first. Like, the first day I came home. But your face is a little bit puffy, and then it goes down. So, it's this process of every time you look at your face, you're like, "Oh, wow, that looks great!" Then I was going for treatments every two to three weeks. In the period of two to three weeks [the puffiness] would go down a little bit. But over time, it kept building up and up and up. So, yes; you saw a big improvement when you first had it. Then it went down again. The next time you had it, you saw a big improvement. But over time, it builds up -- filling it in, basically.
It's hard to notice it after the first time, though. I mean, it takes more than one treatment, although I have read the doctor's decision saying I only needed four treatments. That's all some people need -- people that do not have severe facial wasting; four treatments is all they need.
Right. I have heard that it absolutely depends on how serious your lipoatrophy is. I guess I would question why that dermatologist was making such a conservative assessment.
Yes. Well, like I said, it was in Maryland, so maybe they hadn't seen severe cases there. I don't know. I mean, that was something that, at the time, I said, "Should I fight this?" I said, "Well, I'm getting six treatments. Let me see if that does the whole thing." You know? Maybe I don't need to go through another round of fighting with insurance companies to get more treatments. He did say, specifically in the approval, it said four treatments for the first year. Now that year is almost up; I think it may be April that it would be up -- so, then I can go back to the insurance company and say, "OK, a year is up. I want more."
At this point, you have had how many treatments?
I've had 10.
How is it? How many more do you think you need, if any?
Well, my doctor had said if I could get two to four treatments, it would be perfect. My face looks absolutely 200 percent better than it did before. If I can't get those four treatments -- put it this way -- if I can't get these four treatments, it's not going to be the end of my life. If I can get them, fine. If I can't, okay. You know, I'm happy with what I have at this point. It's not perfect, but compared to the way I looked a year ago, it's perfect.
It makes a world of difference.
Yes. It's made a world of difference to me. Since I've done that, I've done a lot more things in my work and stuff, and everything else. It's just, I feel alive again and I'm doing more things.
Can you talk about how people have responded differently?
Well, people that know me and saw me before or through the process, they noticed it gradually. Like you say, you don't notice it the first time or the second time. You might notice it the third time. Some people might notice it later. But everybody was like, "Oh, wow! That's really amazing! I can't believe what a difference. It makes you look great!" So, people definitely react to it. A close friend of mine who was actually somebody that I had just met before I started doing the treatments said, "Well, I don't know why you're doing this. You don't need it. I don't see anything that's wrong," blah, blah, blah. Halfway through the process he said, "Now I see why you're doing it." It's definitely something that -- it's quite noticeable.
What do you think he meant? I mean, if he wasn't just "being nice"?
Evidently I looked fine to him the way I was.
But you didn't look like yourself.
He didn't know me. He didn't know what I looked like before. So, he was judging me as he met me. Then, it was like, "Oh, I can see now why you're doing this, because I didn't realize that that's the way you looked before." I mean, it makes a major difference in the way you look.
People have said, "It wasn't just that I looked older or I looked sick," although looking that way is a terrible burden. But it's like, "I wanted my face back."
That's true, yes. I felt like I looked 10 years older than I had ever looked. I was always a person that looked 10 years younger than my age. Here I was, looking 10 years older than my age. I mean, it could be very vain, but it's the truth of the matter. It wasn't my face anymore. I was looking at this person who wasn't me. That's why I say I actually developed this habit of looking in the mirror as infrequently as I could; I just didn't want to look at myself anymore. It's like, after it's done, all of a sudden, it's like, "I'm back!" And it's not just because of your face. You feel like yourself again.
It has these effects that are much, much -- they are very far reaching effects. It affects your psyche in ways that I still don't think I understand completely. But I know that since I have had it done, I just feel so much better about myself and the world, and things that I'm doing. I'm able to do a lot more. I was avoiding doing anything that required speaking in front of groups. At AIDS Walk I was able to address the entire crowd of people, because I was in the middle of this process and I felt that good about myself already.
Are you concerned about needing touch-ups in the future?
At first they were saying that you'd need what they'd call a "touch-up" every year. When I mentioned that to my doctor, he said, "No, that's not been my experience." I don't know. It seems that the longer the experience goes on -- that following people that have had the treatments -- the less it seems that people are needing as much touch-up work as they thought they would.
So, I don't know. I think my doctor has people that are four years into the process, and he says he hasn't needed to do much of anything to anybody. So this -- what at first, was one of the things I was leery about in having the process done is that I was going to have to do it every year. He said that's not true. He said, "At this point, I've had people that are two or three years into it, and I haven't had to do any touch-up work on them." So I don't know how long it lasts. It's not meant to be a permanent thing, but it seems to be holding a lot longer than people thought it would.
How much does it cost to have the procedure?
It varies a lot. Because a lot of people, I think, go to plastic surgeons to have it done. You're talking about the procedure of actually doing it?
Yes, the doctor's charge.
I've heard anywhere from $1,000 to $250. I was lucky; I was on the low end of that. So, I got a very good deal on having my work done. But I know some people pay up to $1,000 for a treatment.
How much did the insurance cover?
Well, the insurance covered -- and see, the other thing on the whole pricing process is, before it was approved, the material -- the Sculptra itself -- cost $400 for a kit, which is two treatments. As soon as it was approved, it went from $400 to $1,000 for two treatments. So the price of it doubled as soon as it was approved. This pushed it further out of somebody's ability to afford it on their own. Now, I'm sorry. I forgot what the question was that you asked me.
I'm just trying to figure out how much the insurance company covers.
My insurance company should cover 100 percent of it. I shouldn't have to pay anything for those four treatments.
But it ends up not being that expensive -- I mean, comparatively.
I don't know what I'm comparing it to. I mean, it's not like the insurance company is having to pay $20,000.
Well, it's not. It depends. With a lot of people, well, if you needed the four treatments, it would be $4,000 for the material and whatever the doctor charged. So, yes. You're not talking like it's $100,000 to do it. But it's a lot of money for somebody who's on disability to be shelling out of their pocket to do.
In your appeal, did you talk at all about examples of cases where reconstruction is covered? The insurance companies deny it because it's cosmetic, but there are certain cases, like reconstructive breast surgery for women who have breast cancer, etc.
That was one of the things that I found very early on, on the Internet, when I said I was looking for articles to send in. Somebody drew that parallel between breast reconstructive surgery and this. Or having a serious accident and having facial work done. That parallel was drawn. I put that into my appeal. But they just went over that like it wasn't there. I would imagine, probably, when the fight for breast reconstructive surgery started, there was probably much the same. But, yes. I referred to it in my appeal as being reconstructive surgery, rather than cosmetic surgery.
Does the fact that you were successful set a precedent at the insurance company, in a legal sense?
Not really, no. Because I have talked to people that have Oxford, who have been denied.
I didn't want to say that's who it is. I didn't know if you wanted that information or not. I was trying to be discreet. But it's been the same with other insurance companies, too. None of them want to pay for it. Although I have heard that people who have Blue Cross, who went ahead and had the procedure done, were able to get their money back. So, I don't know. But in Oxford's case I heard they still say no. Then, if somebody gets them in touch with me, I tell them how to get them to say yes. But it doesn't always work. Because somebody did call me. They went through the whole appeal process, and they were still turned down for it.
Maybe we could shift a little bit to your talking more generally about your work at GMHC. Part of what you do is focusing on this, right?
Even just focusing on this particular thing, lipoatrophy?
Well, I'd say more, insurance appeals, which has become the hot item. Because it seems since Medicare Part D went in, insurance companies are denying more and more things. What they're trying to do is only cover drugs that Medicare Part D is covering. So, I'm working on another appeal already for my stuff, for medication that I have been denied.
But, I have done a lot of different things at GMHC. I have done lobbying work with them. But my sort of specialty there is private coverage. I do lobbying every year that revolves around these insurance rate increases.
Maybe you could talk a little bit in terms of the people who have come to you to get help appealing for insurance payments for lipoatrophy reconstruction. What kind of success and failure have you seen?
I haven't had anybody come back to me and say that they have actually done the appeal. Actually, there was one person who had lost an appeal, and they called me. I gave them the number of my decision. They sent the decision number with the external appeal, and he was approved. So that was one that went through.
What do you think that means? What does that suggest?
It suggests to me that once somebody reads somebody else's [decision], it is establishing some kind of a ...
... a precedent. Thank you. That's the word I'm looking for, to give the treatment to people. I have a strong suspicion, myself, that sometimes when people go for it, they don't put enough [information in] about the mental health issues. Because that was referenced several times in my decision. I think that's a real key to getting approval on this stuff. I think all of us, when it comes to that kind of stuff, don't really want to share that stuff with people. But it's one of those things that you sort of have to put out there.
Even though the decision that was passed down on the external appeal that you made came from a dermatologist, not a psychiatrist or a psychologist, still that person was authorized to make the decision, and was swayed.
Yes. He was the one that made the final decision. From what I understand with these things, there's a panel of people. They don't tell you everybody that was on the panel that made the decision. So, there could have been psychologists, or therapists, on the panel as well. I don't know. That, I couldn't say.
If someone doesn't have a therapist, how would you advise them to document the psychological effects?
Well, from their own personal experience. I did that as well, in my appeal. I wrote letters of several pages, saying how this was affecting my life. That it made me stay home. I didn't want to go out. It made me feel inferior to other people. You really have to share -- almost over-explain everything that it causes you to do. I mean, you really have to. Because if you just say, "Well, gee. You know, I don't like the way I look so I stay home," they don't get that. You really have to go into, "I used to do volunteer work five days a week. Now, I only do it two days a week, or I don't do it at all, because I don't want anybody to see me." You really have to explain just how horrific the effects of this thing are on you.
Do you include photographs and stuff like that?
I did include photographs in my initial appeal. I included how I looked before any treatments. Whether that had any effect on anybody or not, I don't know. Because the case, of course, keeps building over time. You know, you send the first case. Then when it came back, I added more stuff to it before I sent the external appeal, so it grows.
Now it's about -- I think the whole appeal is probably about 50 pages or more of information on stuff that was passed back and forth. It got quite sizable.
So you, in fact, know someone who, after citing your decision, got Oxford's approval?
They did get it approved, yes.
Through an external appeal? Did they have to go all the way to an external appeal?
I think it was. I think when Oxford denied it, they had heard about me. Then they got in touch with me, and I gave them the decision number. He included that. Now, whether that did it or not, I don't know.
How did they hear about you?
Either on the Internet -- I had posted stuff on the PozHealth Yahoo! Group when I was going through this, because I wanted to try to find other people that were doing it. I did find a few, but not too many. When I won, of course, I put it on there. So he could have picked it up there, or he could have gotten my name from GMHC, or a couple other places.
In terms of the information you got from PozHealth, do you feel that a lot of people are not getting this because they can't afford it and their insurance company isn't covering it?
It seems to me that there are a lot of people in that group that were paying for it themselves, and not going through insurers, which I was surprised about.
Not even trying?
Not even trying; just paying for it.
Was it partly because they didn't want to go to all the trouble?
I'm not sure about that. People tend to -- people do shy away from fighting with insurance companies. An insurance company says no to people and they just say, "Okay, I can't have it." Obviously, I don't feel that way. In fact, the more they say no, the more I'm determined that I'm going to get what I want. For some reason, people just think insurance companies are the be-all and end-all. If they say no, you go away. That's exactly what they depend on you doing.
So, I think a lot of people say, "Oh, it's a hassle." It is; it's a lot of work. I mean, from start to finish, from the time I started really seriously thinking about doing this appeal, to the time it was approved, was six months. It's not an overnight process, if you have to go through this whole thing. In my case, though, I've made it kind of my career. I've made it my job. It's what I do. Now, I can probably do it a whole lot faster. But the first one took six months.
I guess for some people it's hard to plan. You want to get this as quickly as possible, once you realize you need it, or you know it's available.
I know with myself, going through it, sometimes you [also] just get to the point where you're like, "I don't want to do this anymore. It's making me feel awful. It keeps bringing all of this stress up. Maybe I should just forget about it." You know? So, you need that constant sort of nudge, which is why I'm happy that people are calling me up, because at least I can say, "You know, you can win this. This is maybe how you can do it. I can send you an example of this letter, or that letter, or something." Because that's really what I like to do. I like to help people get what they want. That's why I got involved in doing the volunteer work that I do.
I know that. Do you know Nelson Vergel?
He has a letter posted on his Web site. Have you read it?
I haven't been on his Web site recently, no.
He mentioned that it gives you an idea of what you need to say. But I'm wondering if it actually includes psychological stuff.
This isn't on the PozHealth Web site?
Yes, it is.
Oh, OK. I actually haven't been looking at it that closely lately. So, I'll have to look for that.
Do you know any other Web sites or services?
That was the one that I found most helpful. I know that there's a facial wasting [site] -- I think it's www.facialwasting.org.
What do you think of that?
I actually didn't look at it too much, so obviously, I guess I wasn't that impressed with it. The PozHealth [e-mail list -- to join click here] I found very helpful, because it was just people talking about what they were doing. It's more action oriented. It's people asking questions: How do I do this? How do I do that?
People respond to you quickly?
They're really helpful?
Yes. That's what I found. To be honest, I don't spend five hours a day on the Internet researching stuff. I don't obsess over my illness. When I need information about something, I get on and I'll research it, but I don't keep up on everything that's going on. Because I found if I do that, then I wouldn't have a life.
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