Virtually all advances in the care of cancer patients have occurred as a result of clinical research.
Before my son, David, was diagnosed with brain cancer, I thought that clinical trials were scary experiments that were little better than science experiments. I remember when it was suggested to us that we should look into clinical trials for David. I remember the “no” screaming in my head, but by that point, I had already heard scarier words: Malignant. Glioblastoma Multiforme. Terminal.
At that time, there was no hope for David using traditional medicine. To be honest, our doctors were pretty frank that the clinical trials didn’t hold a lot of promise either. It was difficult to know what to do. Should we take a chance on a traditional treatment that statistically didn’t show much chance of helping David? Or should we choose a clinical trial that was mostly an unknown? At some point, that old quote came to me, “Insanity Is Doing the Same Thing Over and Over Again and Expecting Different Results.”
It felt like we were not going to get anywhere with the treatment that had been failing people for decades. When we looked at it like that, the clinical trial seemed like the only option. As we explored the clinical trial details at a deeper level, we started to understand the process better, and it became a lot less scary.
Clinical trials make sense for patients who don’t have a treatment plan that will give them their desired outcome. People approach cancer and its treatments very differently, and it is important to take that into account when considering trials, but if the traditional treatment plan offered seems unacceptable, then a clinical trial may be what you are looking for.
In case you may one day find yourself having to navigate a similar situation, here are some details you may need to know.
How Can You Find Clinical Trials?
At most major cancer centers, the oncologists will have some suggestions of clinical trials that are available. However, you may want to do your own research to make sure nothing goes overlooked. An excellent website to do clinical trial research is clinicaltrials.gov. It will let you search for clinical trials throughout the world based on your exact diagnosis.
I’m always hesitant to recommend talking to other patients because I think there are a lot of biases represented in the patient population. That being said, you may get much more detailed information from fellow patients than you would from the clinical trial doctor because of confidentiality issues. Just remember that each person is unique and your experience may not match theirs.
What Questions Should You Ask?
Depending on what phase the trial is in, you may have access to a little or a lot of information, but here are some questions you can ask to decide if this is a process you are willing to consider:
1. What phase is the clinical trial in? (More on that here.)
2. What is the expected outcome of this phase of the trial?
3. What are the known side effects of the treatment, and how likely are they to occur in each patient? How do those side effects compare to the “standard” treatment?
4. How far would you need to travel to participate in the trial? How often would you need to go there, and how long would you need to stay?
5. What kind of tests will be done to monitor your progress on the trial?
6. How is the data from the clinical trial being shared? Will you be able to get a report on the results? And how quickly will that information be shared?
7. What assistance is available for clinical trial participants?
8. Will going on this trial limit the other treatment options that are available to you after the trial?
9. Will the researchers work directly with your current oncologist? Who will be responsible for your care while on the trial?
10. How long will the trial continue? Can you stay on the trial treatment as long as you are responding positively to it?
11. Under what circumstances would you be kicked off the trial?
This is obviously not an inclusive list, but hopefully it will help you help you identify what issues are important to you.
How Can You Afford A Clinical Trial?
This is going to vary, but there are several funding sources for legitimate clinical trials.
1. Funding from foundations to the clinical trial list – These funds can cover anything from the treatment itself to travel. This type of funding is managed by the clinical trial.
2. Funding from a drug company – These funds can also cover anything from the treatment itself to travel. This type of funding is managed by the clinical trial.
3. Funding from your insurance company – While a lot of insurance companies won’t pay for a clinical trial, they usually will cover “standard” tests that are needed as part of your care. Things like blood tests and MRIs might be covered by your insurance company.
4. Funding from foundations directly to patient – Foundations may have funds available to help patients travel to and from treatments. It is worth exploring both national foundations and local foundations to see what they can offer.
5. Independent fundraising sites like GoFundMe. These sites are definitely more work, but can provide funding for all sorts of expenses from clinical trials to help with your monthly bills.
These questions and suggestions only scratch the surface of the complicated world that cancer patients need to navigate. We will make it an ongoing priority to help share information that will make the path a little smoother for all.