Presenter: Hannah Stanley
Guest: Theresa Juday
Guest Bio: Theresa Juday, who not only has lupus herself and has for right at 15 years, but is also a pharmacist and comes to this from a real place of medical knowledge.
Health Professional Radio – Treatments Available for Lupus
Hannah Stanley: This is Hannah Stanley, and you’re listening to Health Professional Radio. This is Segment 2 in our two-part conversation with Theresa Juday, who is a lupus patient herself and also a pharmacist, discussing what she went through to get a diagnosis, and some of the current research that’s going on in lupus, as well as global support that’s available for Lupus patients. Theresa, tell me a little bit about the stats of lupus. How many people are affected by it, what kind of meds are out there? How minimal can it be and how severe can it be?
Theresa Juday: There are anywhere from 1.5 to 2 million people in the United States who have lupus and the numbers tend to fluctuate a little bit because it is so difficult to diagnose. Ninety percent of those people are women, although it can affect men, but their numbers are much smaller. On the flip side, men who do have lupus tend to be much sicker than women who have lupus.
Hannah: Oh, that’s interesting.
Theresa: It is. It’s a very unusual twist to the disease. The average age that women are diagnosed with lupus is anywhere between the ages of [indecipherable 01:08] from the low to mid 20s until they’re about 40. That’s typically when diagnosis occurs, but there are children who are diagnosed with lupus and there are seniors who end up getting diagnosed with lupus, who’ve actually gone that long in living with the disease.
There’s a big difference in severity as well. So, there are people who have lupus who tend to have more mild symptoms, where they’ll be all mostly the rashes, all the way up to very severe cases where it actually begins to destroy your kidneys, your heart, your lungs, or even your nervous system. So, it can be very severe to very mild, just depending on you, individually, and how your body reacts to lupus.
Hannah: Does an earlier diagnosis mean that it will build into something more severe, or it can start out very severe, or it could be much like the symptoms where you can have flares and then none, days and weeks and months and years where you’re symptom-free? Is it like that where it can just kind of go wherever it decides to go?
Theresa: Yeah. So, it can relapse and remit, I guess, for lack of a better term. So, lupus patients can go days, weeks, even years without having a lot of symptoms and then they can go into periods where they are fighting lots of symptoms for a prolonged period of time. So, it can happen in that manner. And everybody who has lupus tends to experience it in different ways. So, we don’t all have the same symptoms. There are some that are very common amongst everyone who has lupus, but we don’t all have the same symptoms.
And we don’t all have the same course. So, some people tend to have the symptoms all of the time and it doesn’t really remit in any way. And there are some people who kind of fluctuate, where they have periods of relapse and periods of remittance.
Hannah: But there’s no set … you were diagnosed when you were 20, therefore by the time you’re 50 this will be very severe. It doesn’t increase based on time spent?
Theresa: No. There’s no just [indecipherable 03:34] that it’s going to be worse for you than someone who is diagnosed later in life. That doesn’t typically happen to lupus.
Hannah: All right.
Theresa: In fact, if you’re early at your diagnosis, chances are you can get a better control on your disease because you’re going to get treatment sooner.
Hannah: That’s very interesting because as you said, you can get treatment but there is no cure.
Theresa: That’s true. We currently do not have a cure for lupus. As an autoimmune disease, it is very difficult to create medicines that would treat it or, at this juncture, to be able to find a cure.
Hannah: All right. Now, you said earlier that it affects, at least in the United States, somewhere between, it’s estimated, 1.5 to 2 million people, which you and I, sitting on the phone, that’s a lot of people! I can’t fit 1.5 million people in my house, so that’s a huge number. However, and as far as diseases go, that’s a pretty small-ranking disease.
Theresa: It is. Things like heart disease or diabetes, which affect millions of people tend … if you want to put it into perspective, when you look at lupus and how many people it affects, at 2 million that’s a small drop in the bucket compared to other diseases where you have 30, 40, 50 million people affected by them.
Hannah: Cancer could have lupus over at their house because their house is so much bigger.
Hannah: But the problem is with that, while it is great that fewer people are affected by this disease, that also means that the awareness is not where we would like it to be – because this can be fatal, this can affect people and their lives permanently, and it does, because there is no cure. So, all of the research dollars and fundraising goes and makes a huge difference …
Theresa: That’s true, when you don’t have as high of a profile, you do have to fight for every research dollar that you can get. We are however in a very interesting time, I think, in terms of medications and research globally, this is a very interesting time. It used to be that a lot of research was done on drugs for very common diseases – diabetes, high blood pressure, those sorts of things because, the theory was, if a drug manufacturer can get a drug approved and to market, they are going to be able to recoup their money very easily because you are going to be able to market that drug to millions and millions of people.
And that worked for a while, but I think now we are at a point where you already have so many drugs in the market for those diseases, for diabetes, for high blood pressure, high cholesterol, that a lot of manufacturers are deciding to pull their research resources and devote them to areas that are more rare because there’s a few advantages. Number one, several years ago the federal government made a change to the laws, that if your drug is given what’s called a rare disease designation or an orphan disease designation, then you are given a longer patent life.
So, as opposed to having a competitor come out sooner, you get a bit of an extension because you were willing to research and find a drug for a disease that is listed as rare or orphan.
Hannah: That’s a huge benefit.
Theresa: It is. And there also has sprouted up, out of this need to find drugs to treat or cure these rare diseases, a group of what’s called venture philanthropy. So, groups that are looking to fund just that type of research because they know that the research dollars aren’t there for these more rare diseases. So, that has really sparked a period of innovation, I think, in the pharmaceutical world, not just for lupus, but for many other rare diseases where we have not seen drugs for a long period of time.
We are now starting to see treatments and some very innovative treatments come to market really because of those, I think, three key areas.
Hannah: This is a really fascinating. One, I didn’t know about the patent life, which is incredible, because that is where drug companies can make all of their money. So, that is really, really fascinating, because if no other drug company can make it, then people have to stick it in your line. That’s really fascinating, but what are the treatments that are current while there is not a one-pill, fix-it-and-make-it-go-away medicine yet? What are the treatments that you go through and that other people who have lupus have access to currently?
Theresa: There are what are considered to be the first-line treatments for lupus. So, traditionally, oral steroids have long been used to control the inflammation and the runaway immune system for lupus patients. These are not anabolic steroids that we so often hear about in the sports world. These aren’t those types of drugs. But they do a very good job in working to control that inflammation and clamp down on the overactive immune systems of lupus patients. The downside to these drugs is they really have some nasty side effects when they’re used for long periods of time.
They cause weight gain. They can cause psychological changes. They can cause sleep disturbances. They can cause diabetes. And so the goal is to get the lupus under control with the steroids, but not to keep the patient on a steroid.
There’s another group of drugs, one of which is very popular, it’s called hydroxychloroquine. That’s used in a number of different types of autoimmune diseases, lupus being one of them, rheumatoid arthritis is another. That drug too, they’re not really entirely sure how it works. It came about as an anti-malarial drug many, many years ago. But it does have what they call disease-modifying activity in autoimmune diseases for many patients, and so that’s another standard that got a lot of lupus patients, what we start out on. And for some patients like myself, I’ve been very successful with the [indecipherable 10:04] medications, I’ve been very fortunate.
But those have really been primarily the big medications. There’s been some other that are used with rheumatoid arthritis that are tried in lupus as well, as both being what are called autoimmune diseases. There’s enough similarity that for some patients they will work. Those drugs will work as well.
And for probably the last 50 years, that’s about all that was on the market for lupus patients. We would try other drugs to maybe treat some of the symptoms, but there really weren’t too many other things that you could use. A couple of years ago, a manufacturer came out with a drug called Benlysta, which is the first drug that has been approved in 50 years specifically to treat lupus. So, it has given some patients hope. It’s not a magic bullet by any stretch of the imagination. But it has offered hope for patients where they weren’t, and none of the other treatments were really working for them.
And there are, because of this, renewed interest in looking for drugs to treat rare diseases, because of the potential research dollars that are out there for some of these diseases. There are some drugs in the pipeline, the drug pipeline, that are very promising and have shown some, at least in clinical trials, have shown some good results and offered some hope on the horizon.
Hannah: All right. Theresa Juday joining me today. I’m Hannah Stanley.
Theresa: As we mentioned in an earlier segment, it’s very difficult to diagnose lupus. Part of that is because it’s not as well known as a disease. It’s got very common symptoms that vary from patient to patient. It can look like another type of disease, and so there’s not a lot known about it and a lot of primary care doctors don’t have enough information to even think that a patient coming to them with a certain group of symptoms may have lupus.
So, part of the Lupus Foundation’s mission is not just fund educational programs for people who have lupus, but also for physicians, to help get the word out so that we can get an accurate diagnosis as early as possible.
Hannah: Globally, is there different research that’s happening? Are people who have lupus in Europe – do they have access to different types of medicines?
Theresa: At this point, no. At this point, lupus patients globally, for the most part, at least westernized medicine countries, have very similar treatments available. But there is a lot of research going on in a lot of different areas all over the world. Although many lupus patients suffer from the fatigue, the debilitating joint pain, and potentially joint destruction, there are other areas, and so there are parts of the world that are actually doing research on how lupus affects the kidneys and finding treatment to assist that.
Because if lupus does affect your kidneys, worst case scenario. and without any treatment or without being able to get it under control, it can actually damage your kidneys to the point where you would need a kidney transplant.
Hannah: A transplant, dialysis or …
Theresa: So, there is actually research going on in a number of countries, the US included, to look for treatments specifically for that aspect of lupus. They are doing research on treatments for how lupus affects the brain, because it can affect the brain and obviously that’s a very damaging scenario as well. So, there is research going over around the world, but currently pretty much the same treatments are available worldwide.
Hannah: Excellent. Theresa Juday, lupus patient herself and pharmacist [indecipherable 13:42]. Thank you so much for your time. This concludes Segment 2 of our two-part conversation with Theresa Juday, who is a lupus patient for 15 years as well as being a pharmacist. You are listening to Health Professional Radio. I’m Hannah Stanley.
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