Lupus has come a long way in a relatively short time. Back in the late 90’s when I was being tested, there were no lupus bloggers I was aware of and very, very little information about what this strange word “Lupus” meant. Even the doctors that finally diagnosed me in my first year of college, couldn’t really explain to me what was happening to me. And that’s less than 20 years ago; if you can, give a massive salute to the lupus warriors who have been battling the illness since the 50’s and 60’s – they had even less to work with then!
Happily, now there are many more places and people making it a point to help inform others and make the early days of diagnosis easier than they had it. While celebs like Lady Gaga, Toni Braxton, Seal and Nick Cannon are stepping forward with their stories, organizations such as the Lupus Foundation of America are fighting tooth and nail for more research and better living conditions for all lupus patients.
But you don’t have to be a celebrity or join a national foundation to help in the fight against lupus (though, it doesn’t hurt). One of the most vital ways everyday folk like you and me can make huge contributions to stomping lupus is by participating in clinical trials. Are your medications just not doing the trick? Are you having trouble paying for your medications? Want to be on the cutting edge of new treatments? Read on.
What are clinical trials?
Clinical trials are a fancy way of saying medical experiments. Teams of doctors, nurses, researchers and, finally, volunteers, work together to evaluate both medications that have never been used before and medications that are already in use, but show promise to help other outside their targeted area. If you’re on Benlysta now, you have clinical trials to thank for proving that it works before it hit the market. Use plaquenil? It was originally used to treat malaria. It took rounds and rounds of testing to prove that it could help people with lupus as well.
Now before you start thinking about big, scary needles and freaky machines, there are two types of trials: interventional and observational. Interventional trials cover any treatment, procedure or device that might have an effect on your symptoms. They can include non-medicinal treatments such as dietary changes or even how the use of social media can help lupus. These are the front line studies, where researchers (and us patients) can really put rubber to the road and see what treatments can help day-to-day symptoms.
Observational studies are exactly how they sound. Researchers select their participants and simply observe them over a period of time to see if any patterns or similarities present themselves. If a researcher does find a pattern, it can be a major clue for the development of a future treatment or a faster diagnosis. These tend to need less of a time commitment from patients than interventional studies, but both are equally important.
How do they work?
There are tons of regulations in place to both ensure that the trial’s results have not been tampered with and to protect the safety of everyone involved in the trial. New drugs undergo many “phases” of study before they ever get approved to be used on people.
Often if you qualify for a study, a research coordinator will arrange a time to talk you. They’ll explain what the study is for, what its purpose is (to test a drug, see if there are patterns in symptoms, etc.) and what you need to do for it (fill out surveys, take a medication, etc.). You’ll get a written agreement outlining everything that you’ll be required to sign. Your coordinator will tell you if there are any side effects you might be exposed to, if you’ll get any reimbursement for travel (there is no big money doing this, so get that thought out of your head) and all other details of the study. “Informed consent”, as it’s called, is a big deal, so read every word and ask any and all questions you can think of to make sure that you really understand what’s going on. It’s the law that your identity is kept confidential and that you have the right to leave the study at any time, no questions asked.
Where can I find them?
Here are some links to sites where you can find studies:
You can also ask your doctor if they know of any studies that you could participate in.
Why should I participate?
While there are down sides to enrolling in a clinical trial (more doc appointments, possible side effects, and a bigger drain on your time), I think the pros outweigh the cons. If current lupus medications have not been effective in your treatment, then it might be worthwhile to try an experimental one. If you’ve had problems paying for certain medications, then talk to your doctor about enrolling in a trial that will provide that medication for free. I did this once; when I couldn’t get a certain blood pressure medication or even a cuff to measure my blood pressure, my doctor found a study testing that drug, got me enrolled and I was provided the medication and a blood pressure monitor free of charge. Additionally, being in a study can actually improve your health, since you’ll have more doctors giving you more attention (at no added costs). Almost always, if some abnormality is found during the study (something new in your bloodwork for example), you will be informed. So trials are a great way to get testing done that you would otherwise not even think to do, which might reveal problems early enough to treat.
Do it for science!
Probably the most important reason to get involved in clinical trials is to help pave the way for more gentle, more effective treatments for future generations. For those of us dealing with the harsh (and sometimes permanent) effects of the current medications, being able to spare our future children (or our friends’ children) from ever having to use prednisone or go on cytoxan is more a gift to those who come after us. And who knows? The trial you participate in might be the one that discovers a cure. And even if it isn’t, each completed study is step closer to that goal.