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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 Healthscout.com.
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 Healthscout.com.
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
research?
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.]
