Working as a nurse in hematology/oncology, I often try to assist patients in exploring different treatment options that are available to help them make an informed decision. Often, with myelodysplastic syndromes (MDS), a treatment will work for a while before losing its effectiveness. Sometimes, treatments don’t work at all or have intolerable toxicities. Because there are only a limited number of available therapies for MDS, I encourage consideration of clinical trials of a new drug or new combinations of drugs.
Why clinical trials?
When you enroll on a clinical trial, you are likely to be monitored more closely than when you are treated outside of a study. There is an increase in lab draws and tests such as EKGs, CT scans or MRIs, as well as an increased number of clinic visits with your doctor and nurse. This is in comparison to the standard of care visits when not involved in a clinical trial, when you may see your doctor only every month or two. Due to this more intense schedule and level of monitoring, participants often say they feel more secure.
Another reason why I favor clinical trials is due to the financial aspect. During a clinical trial, participants receive the study drug at no cost to them. All of the study-related services will be covered in full by the sponsor, who is conducting the clinical trial. Participants may even be able to recoup out-of-pocket expenses, such as parking, travel, and food or hotel costs. Some patients tell us they experience a sense of relief when these burdens of cost are lifted from their shoulders. Contrary to what many think, standard of care aspects of a clinical trial are still covered by insurance.
Last but not least, when you participate in a clinical trial, other available FDA-approved therapies are still available to you. In other words, you can save already available therapies for a later date in case a trial medication doesn’t work. Some trials even exclude patients previously treated with these available drugs. Therefore, if a patient participates in a clinical trial and it is proven fruitless, he or she can then move on to the next available clinical trial or FDA-approved line-up. However, the reverse may not always hold true. In my practice, we recommend clinical trials first above the approved therapies so as not to exhaust future treatment options. For some of the drugs being studied, you may actually have access to it through a clinical trial months or years before it is approved by the FDA!
In conclusion, having the opportunity to participate in clinical trials enables you to make informed decisions about your health. You may get access to drugs that may not become widely available for years, and if the trial drug does not work, there are other trials out there. If no other trials are a good fit, then you can turn to FDA-approved therapies. To find out where to look for clinical trials in your area, contact the AA&MDS International Foundation, ask your doctor, contact any major medical center in your area, or visit www.clinicaltrials.gov.