May 10: World Lupus Day

[tj_teejay]

Today is ...



And even though I don't personally know anyone with lupus, this is kinda personal to me insofar that I come into contact with lupus at work every day. Most people will probably not know anything more about the disease than it being mentioned frequently on House, MD. It's an autoimmune disease that is (so far) uncurable, unpredictable and debilitating. Moderate to severe systemic lupus erythematosus (or SLE) strongly affects the patients' every day lives and reduces life expectancy considerably. It occurs nine times more often in women than in men, especially in women aged 15 to 45.

Symptoms can vary greatly, from a rash to fatigue, joint inflammation and severe organ damage (often the heart and kidneys) or neuropsychiatric manifestations. It is usually the long-term organ damage that leads to these patients' death. 

It is unknown what causes lupus, and treatment options are limited. Until just a few weeks ago when a new drug specifically for SLE was approved by the FDA, there have been no new lupus treatments approved in over 40 years. Most drugs available to treat lupus have severe side effects, especially if used over long periods of time.

Lupus is difficult to diagnose if you don't know what to look for. It is tricky to manage and, unless a patient presents with facial rash or hair loss, you usually cannot see on the outside that a patient has the disease.

If you've now become just a little bit curious, I recommend you check out the Lupus Foundation of America's website for more info.

And, no, I'm not a spokesperson for any lupus foundation or patient group. I'm just invested because I mostly like my job and what it will hopefully accomplish for patients suffering from severe diseases. And it can never hurt to raise awareness, so this is my contribution.

Comments

[photoash.livejournal.com]

Glad to see you post this! I know some people online with lupus and it is a very rough disease and like any invisible illness the people get a lot of flack for not 'looking sick'.

[tj-teejay.livejournal.com]

Thanks! I can imagine that it might be difficult for others to accept that you have a debilitating disease if you can't see the symptoms very clearly. I watched one of our "patient ambassador" videos on our intranet page today, and she talked about this very topic.

I've also worked in Crohn's Disease, which has a similar "problem". Autoimmune diseases are very hard to control, and I can't imagine what it must be like to live with such an unpredictable disease.

[rabidchild.livejournal.com]

Ah, thanks for posting - I have a colleague with this disease and it becomes so hard for her to deal with others' reactions sometimes!

[fredo2706.livejournal.com]

I could now go on about the oral manifestations (e.g. lichen planus and other ulcerative erosive conditions) of lupus and post pics on here, but that would be rather gross. So I won't... Wow, this takes me back to the Oral Medicine module at dental hospital.

[tj-teejay.livejournal.com]

Yeah, I think generally it becomes hard for people with lupus to be able to keep a full time job at all. The disease is very taxing on the body, and when it's in flare, there's going to be a lot of sick days.

[tj-teejay.livejournal.com]

Oh, I've seen pictures of the oral manifestations in PowerPoint presentations. The skin rashes are also pretty unpleasant. Really not something you want to wish on anyone.

[tj-teejay.livejournal.com]

Thankfully, the company I work for bothers. And the fact that no new drug has been approved for decades until recently doesn't mean that no one's tried. It's just that there hasn't been anything that's proven efficacious in clinical studies enough to get approval. Hopefully, that's going to change in the near future. I know that quite a few other companies are doing SLE studies too, so more drugs are definitely being developped. It's just so hard (and unbelievably expensive) to get to a stage where you get to test your drug in patients (and then hopefully get significant results). A cure would be great, but I think that's too far in the future for my generation to live to see.

And of course, as with almost anything involving business, these things are governed by money. It's the nature of the matter that pharma companies tend to go where the money is, and that's usually not the more obscure diseases that don't have a big, global patient population. Though I was quite shocked that a lot more patients have lupus than I previously thought. It usually takes smaller companies that specialize in certain areas to look at rarer diseases like lupus and other autoimmune disorders.

If you work in a clinic, then you probably mostly see the patients that are in flare and have acute symptoms. I'm sure those are not "invisible".

[tj-teejay.livejournal.com]

The fact that companies don't put a lot of effort into developping drugs for diseases that don't exist in well developped countries is simple: profit. What good is a drug that the people who are sick won't be able to afford?

And while it sounds horrible, it's not even greed. It's a simple rule of sustaining the company. The development of a drug that makes it to the market literally costs millions of dollars. Sometimes billions. A single phase III clinical study costs several million dollars. The amount of money that these things cost just blows my mind every time. In the end, it's a simple matter of economics and maths. A pharma company that does research and development cannot exist if they don't earn back what they spent billions of dollars developping even before it started to make any profit.

Now, I'm not trying to defend the pharma industry. Not everything they do is good and just. And I don't agree with everthing they do. However, they make sure that I get a paycheck every month, and the work I do is interesting and has taken me to places I would otherwise never have seen. And for that I am grateful.