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CDC Telebriefing Transcript
Trends in Death from Systemic Lupus Erythematosus-United States, 1979-1998

May 2, 2002

CDC MODERATOR: Good afternoon. This is Kathy Harbin. I am from CDC's Chronic Disease Center. I'll be your moderator today.

Dr. Chad Helmick, spelled H-e-l-m, as in Mary, i-c-k, from CDC's Arthritis Program is with us here today, and he will be talking about the latest trends in deaths from lupus.

DR. HELMICK: This is Chad Helmick. I've worked at CDC for a lot of years, especially in chronic disease, and most recently in arthritis. We deal with arthritis and other rheumatic conditions, the leading cause of disability in the United States.

And every May, which is National Arthritis Month, we have an article in the MMWR. This month we chose to focus not on one of the more common diseases, but on one of the less common, but more fatal diseases. This is systemic lupus erythematosus. I think you've seen some of the press releases and the MMWR summary itself. To me, the main messages of this article is that we do get premature deaths from some types of arthritis, in this case lupus, and we do see real disparities in how these deaths occur, and it's not clear what that's due to. This is important because of the health objectives for the nation. The Healthy People 2010 document aims to reduce and actually eliminate disparities.

Some of the problem that we have here in making sense of this is that we really don't have enough data to know what to make of it. There is very few data on systemic lupus erythematosus. Death data provides one anchor that allows us to look at what's going on. The other information we need comes from surveys, and registries and things like that, which really are not out there now, and that's why we end up saying in this article that we are exploring the possibility of developing a lupus registry to help explain some of these disparities.

I think the one take-home message out of the article itself is that black, middle-aged women, age 45 to 64, not only had the highest death rate, but they had the biggest increase in death rates over the past 20 years. It went up nearly 70 percent, and that's startling information, and whether that's due to an increase in underlying disease or other problems is not really clear.

That's all I have to say for now.

CDC MODERATOR: This is Kathy Harbin again. We are ready for questions.

AT&T OPERATOR: Thank you.

Ladies and gentlemen, if you do wish to ask a question, please press the one on your touch-tone phone. You'll hear a tone indicating you've been placed in queue, and you may remove yourself from queue by pressing the pound key. If you are using a speaker phone, you may need to pick up your handset before pressing the one.

Once again, if you do have a question, please press one at this time.

I am showing a question coming from Elwood Eddleson with Please go ahead.

QUESTION: Why is it that SLE is such a fatal disease? Why does it differ in that way from other forms of arthritis?

DR. HELMICK: Well, this is an autoimmune type of arthritis. Many autoimmune diseases have higher fatality rates. Another example of an autoimmune arthritis is rheumatoid arthritis. That's much more common. Please don't die from it as often, but there is premature mortality from rheumatoid arthritis as well.

I think part of the problem with lupus is the autoimmune process that attacks your own body, attacks so many different organs. What we see is that people often have a lot of kidney problems which can really compromise your health. There is a recent understanding that people with lupus tend to have coronary artery disease more than you would expect, and they are trying to explore why that is.

AT&T OPERATOR: Mr. Eddleson, did you have another question?

[No response.]

AT&T OPERATOR: We're going to go on then to a question from Aaron McLean's [ph] with the Associated Press. Please go ahead.

QUESTION: Yes. Hi. I know there's a lot more study that needs to be done in this area, as you said, but what are the working theories that you have to explain both the gender disparity and the race disparity, not just in lupus deaths, but in incidence, in general?

DR. HELMICK: Well, people don't really have a good idea. We don't know what causes lupus to begin with. When you look at the gender disparities, people look at the obvious differences between men and women and focus on estrogen, but there's a feeling that that's not really a good enough explanation.

There was actually a recent article just a few months ago that tried to look at some of these issues and really didn't come up with any answers on it, and that goes for the racial discrepancy as well.

Does that answer your question? I forgot all of it.

QUESTION: Yes, that's fine.

AT&T OPERATOR: Thanks. Again, if anyone does have a question, please press one at this time.

DR. HELMICK: This is Chad.

If you'd like to talk more about that, there's a doctor who wrote that article at Boston University who might be able to talk about it--Timothy McAlindon.

AT&T OPERATOR: Again, if anyone does have a question, please press one at this time.

I am showing a question from Delphia Rick's line with Newsday. Please go ahead.

QUESTION: Yes, can you elaborate a little bit more on the racial disparity.

I understand that it also, it's not just a black and white, and I came in a little late, so forgive me if I'm saying something that--asking something that's already been said. But there is also a higher incidence among Native Americans and Hispanics. Can you explain that? Because none of these groups seem to be related culturally. So what would explain that?

DR. HELMICK: You're right about those observations. Again, there are not a lot of studies, but the studies that have been done suggested that those groups do have higher rates. Again, we don't really have a good idea why that is. A lot of the funding in this arena has been looking at the basic science of lupus and trying to understand what's happening. There has not been as much attention to characterizing what's happening in the larger population, what might put people at higher risk. So I really don't have an answer to that question, but your facts are right.

We were not able to look at those other smaller groups just because the numbers weren't big enough for this study.

AT&T OPERATOR: Did you have a follow-up question, ma'am? Your line is still open.

QUESTION: One more thing. would you call it, more or less, a silent epidemic, given that there are a half-million people who have the condition? It's not easily diagnosed, but there certainly are a lot of people, and they sort of exist in the shadows of more prominent diseases: cancer, heart disease and the like. Can you elaborate on that a little bit?

DR. HELMICK: Well, it's hard to say whether it's a silent epidemic or not. It's even hard to estimate just how many cases there are. Prevalence estimates range from as low as 239,000 to as high as 4 million. Obviously, that's quite a range, and that's part of why a registry, we hope, will help give us a better handle on just how many people there are.

As far as a silent epidemic, there are people walking around with the early symptoms of lupus, but these symptoms are fairly nonspecific, so that they're not recognizing it as a serious problem, and if they see the medical care system, those providers are not necessarily picking up that some of these symptoms might be related to lupus. Trying to figure out how to identify these people that show up with sort of vague symptoms and screening them for lupus is something that several people are looking into.

AT&T OPERATOR: Did you have any further questions, then, ma'am?

QUESTION: No. No, I don't.

AT&T OPERATOR: Thank you.

We are showing a follow-up from Elwood Eddleson's line with Please go ahead.

QUESTION: A couple of questions, actually.

There have been a series of stories lately about how African Americans just simply do not get the same standard of care, symptom-for-symptom, for a number of conditions. Could this be another example of that?

DR. HELMICK: This could be. You see that disparity throughout the health objectives of the Healthy People 2010 document that I talked about. What's causing those is not entirely clear to me, and maybe others have a better idea, but it could be happening here.

I would also say that systemic lupus erythematosus, in particular, is clinically difficult for doctors to deal with anyway, regardless of who they are seeing with the symptoms. So there may be actually two things going on here.

QUESTION: You mentioned the vague symptoms, the early symptoms that are very vague. Could you describe those.

DR. HELMICK: Let me see if I have some of that here. A lot of people would have just fatigue, really bad fatigue, and they're not sure what to make of it. They might have a little hair loss or hives sometimes or a little rash, things like this, that don't really put together a picture that announces lupus, but are symptoms of early lupus. You can tell those symptoms that I listed could be found with a lot of other diseases as well. So that's what makes it difficult for doctors to pick out the ones with lupus from those who don't.

QUESTION: Is there any one or two things that should prompt people to go to their doctor?

DR. HELMICK: That's a good question. I think, with the vague symptoms or the constitutional symptoms, that's very hard to tell people to go see a doctor for that just because of the lupus. I think if you have some of the characteristic lesions, there are really not too many, but if you have what we call butterfly rash over your nose and cheeks, that's one of the classic symptoms of systemic lupus erythematosus. If you have other symptoms that cause difficulties--get chest pains sometimes because people can have lung problems or heart problems, notice a lot of swollen glands, if you feel tired and think you may be anemic, if you have seizures or have problems like that, those are things you should see a doctor for anyway, but they are all things that could be related to lupus as well. I would throw in arthritis with that, too. Arthritis you see sometimes, probably 20 percent or more people with lupus.

AT&T OPERATOR: Thank you. We do have a question then from Charnacia Huggins' [ph] line with Reuters Health. Please go ahead.

QUESTION: This is kind of like a follow-up to the last question that was asked.

I'm wondering, I'm writing for a consumer audience, so I'm wondering is there anything that they can do, black women or women, in general, can do to decrease their risk of death or even something more general like more regular visits to their doctor or anything along those lines?

DR. HELMICK: Well, there may be two components to your question; one is getting a diagnosis and, again, that's just being sensitive to the fact that lupus exists. I think there is more awareness of lupus than you might expect, based on the relatively small numbers that we're talking about. So that's a good start. And I think taking symptoms seriously and maybe even raising it with a doctor if there's a family history, for example, would be important.

The way you asked your question got at avoiding mortality, and that gets at some of the recommendations we had in here, in the article itself. Really, probably the best thing you could do, as far as avoiding early mortality, is getting an early diagnosis and then getting appropriate therapeutic management because there are treatments for this. Unfortunately, the treatments aren't the easiest to undergo, so the compliance with treatment becomes a problem sometimes. I think that's where family and friends can try to help people with lupus stick with their treatment.

Right now, there's a lot of research going on to see if we can improve the treatments with lupus. There have been big advances in how we treat other types of arthritis recently, and we hope maybe the same thing can happen with lupus.

AT&T OPERATOR: Did you have any further questions, ma'am?

QUESTION: No, not right now. Thank you.

AT&T OPERATOR: Great. Thank you.

We are showing another question, though, from Delphia Rick's line with Newsday. Please go ahead.

QUESTION: Yes. Can you go over what some of the treatments are? I understand that some of the treatments are as debilitating as the disease itself. For example, the Prednisone can cause osteoporosis. Can you elaborate on that a little bit?

DR. HELMICK: Yes. With lupus, one of the drugs we use often is Prednisone, and that does cause weight gain, it can cause thinning of bones
and other difficulties as well, long-term cataracts. Sometimes we try to counteract the bone effect by using some of the new medications that help increase bone density, but they can also put you at higher risk for diabetes and other problems like that.

Does that answer your question about Prednisone? I can get into some other medications.

QUESTION: Yes, if you can elaborate on some of the other medications.

DR. HELMICK: There are other medications that are used, say, with kidney disease, which occurs--that's the relatively serious complication you get with lupus. For that, we end up using things like cyclophosphamide, Cytoxan. This is a drug that has been used to treat cancer in the past, and it has good effects in treating kidney disease as well, but it does have a lot of side effects on your blood elements, red cells, white cells and platelets, and those sorts of things.

Again, some of these medications can interfere with fertility, as well, as can the disease. Often this disease occurs in young, reproductive-age women, and that becomes an issue as well because you're torn between treating the disease and starting a family. The drugs can interfere with that, and the disease itself can often reduce fertility.

QUESTION: Are there quinine-based drugs as well? I don't know the appropriate name.

DR. HELMICK: Right. There's a drug called hydroxychloroquine. That's related to quinine, and chloroquine itself, which is used to treat malaria. This is a drug that's been used for a long time among rheumatologists who treat arthritis. It's used for rheumatoid arthritis and other types of arthritis. It's used also for people with lupus.

These drugs all have general immunosuppressive or anti-inflammatory effects, and that's how this is used. At times, you can get rashes initially with that. Rarely, you can get visual problems that affect the back of the eye, the retina, the macula, and that's why people are generally followed by an ophthalmologist when they're taking this drug.

QUESTION: That's the, did you call it hydroquinone?

DR. HELMICK: Hydroxy--

QUESTION: Hydroxy--

DR. HELMICK: --chloroquine.

QUESTION: --chloroquine, I'm sorry.

DR. HELMICK: Right. Methotrexate is another drug that's used sometimes for lupus. Again, it helps reduce inflammation. It can have effects on the liver, so we follow people's liver tests when we do that. It can also affect the blood lines, the red cells, the white cells and platelets. So that's, again, something we monitor.

QUESTION: That's another cancer drug.

What does it do in lupus?

DR. HELMICK: Yes, these are cancer drugs, and I would emphasize that these drugs were initially used for cancer, but they have a variety of effects. The methotrexate is used in much lower doses for lupus and other rheumatic conditions than it is for cancer.

What was your question about that?

QUESTION: What does it do? Because I know that it interferes with folic acid in some kind of way, but what does it do in lupus?

DR. HELMICK: It, again, suppresses inflammation. The way it does it this time is through interfering with some of those biochemical mechanisms, and you mentioned related to folic acid, which is why we actually give folic acid to people who take methotrexate to try to counteract some of those effects.

This is a little too complicated for our conversation, but it interferes with the folic acid cycle and has its effect within that cycle, but you can still give folic acid as a vitamin and avoid the end problem of interfering with that cycle. Does that make sense?

QUESTION: That makes sense.

DR. HELMICK: Okay. It's a little complicated.

AT&T OPERATOR: Did you have any further, then, Ms. Ricks?

QUESTION: No, I don't.

AT&T OPERATOR: All right. Thank you.

If anyone else does have any further questions, please press one at this time.

I am showing a question coming from Betsy McKay's line with the Wall Street Journal. Please go ahead.

QUESTION: Thanks. You said you were exploring the possibility of developing a registry. I was wondering if you could elaborate a little bit on that--who would do it, who would fund it, how would it work and what would you hope that it would show or how would it help with your

DR. HELMICK: Sure. For a lot of less-common diseases that are hard to track, developing a registry is an approach people take. There are different types of registries. There are some existing lupus registries that just take a sample--a convenient sample--of people with lupus, and they're looking at genetic studies.

The type of registry I'm talking about is what we call population-based registry, where we would define a certain population, say, the City of Atlanta or the Atlanta Metro Area, and try to capture every case of lupus in this area, whether it's severe, like the case of the people that are doing the genetic studies are finding, or whether it's mild. That way we get a better sense of just what the numbers are.

From a registry like this, we could get a sense, over time, of possible explanation for the increase in mortality among middle-aged black women. For example, we might find that the mortality increase of 70 percent exactly tracks the increase in the prevalence or incidence of the disease. So that, really, there's nothing that's getting worse about the mortality over time, it's just there are a lot more patients to begin with. Or we could find that the rates of the occurrence of the disease are relatively stable, in which case, the increased mortality says something is going wrong in the system here. What's going on? Let's start investigating that.

Now these are very difficult registries to do. The way we propose to do it is through a planning grant right now. We fund 37 states to do arthritis-related work around the country. We've asked those states to think about how they might plan to do a registry that would look at systemic lupus erythematosus. So this is really a planning grant right now.

There are a lot of difficulties with this. As I said, it's a difficult disease to diagnose, it's a difficult disease to capture because most people with lupus don't end up in a hospital where you have good data. They're seen in doctor's offices, where we don't have such good grasp of the data.

Another issue is, if we were to create a lupus registry, you're going to come up with a lot of other diseases that look like lupus that we don't really want to count. But then, again, those are rare diseases, too, so maybe we should conceptualize this as something more broad than a lupus registry, maybe looking at other connective tissue diseases, diseases related to lupus, make it a more broadly defined registry.

But it's in the planning stage right now, and it would require additional resources to actually fund this. It would provide a lot of very useful information. The idea that lupus has these disparities in race and sex has been recognized in various studies for several decades, but we really haven't captured what's going on, why this is, and this is one way of trying to get a better handle on this.

QUESTION: How long do you think it would be before you would have such a registry operating?

DR. HELMICK: Well, the request is out right now. We would get an application for the planning grant in June. It would be awarded probably in September. They would have a year to do the work, and then we would have to decide whether these planning grants would propose something that was feasible and whether we had the additional funds to undertake something like this. So it might be, you know, two to three years before we'd be able to fund this and start it happening.

QUESTION: I did have one other question, which is you mentioned, and I had also understood, that lupus often affects younger women. Yet, among the black women, you focused on the ages of 45 to 64 or that seems to have been where the greatest increase in death rates was. Do you have any idea why it's affecting--does that mean that it was affecting middle-aged black women more than younger black women?

DR. HELMICK: It's hard to say. Again, that's one of the questions you could answer with a registry better. It may be that people are surviving better now so that, rather than dying at younger ages, they are dying at older ages than they used to. That's one possible explanation as well.

Generally, it is a disease of younger women when they get it, right.

QUESTION: Thank you very much.

AT&T OPERATOR: Thanks. At this time, I am showing no further questions in queue.

Once again, if anyone would like to ask a question, please press one at this time.

To this point, no one has queued up.

Ms. Harbin, no one has queued up to this point.

CDC MODERATOR: Okay. Thank you very much. I believe that people have a contact number for Dr. Helmick if they need to ask him another question.

Thank you very much.

AT&T OPERATOR: Thank you. Ladies and gentlemen, that does include our conference for today. Thanks for your participation and for using AT&T's Executive Teleconference. You may now disconnect.

[Whereupon, the MMWR Teleconference was concluded.]

Listen to the telebriefing

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