Be An Empowered Mesothelioma Clinical Trial Participant

Mesothelioma Help has reported countless times on the importance of mesothelioma clinical trials. While entering a clinical trial can bring an opportunity to receive a potentially life-saving treatment for some mesothelioma patients, it can be a daunting undertaking. Understanding your role, your rights, and the next steps is important to empower you to get the most out of this critical step in your mesothelioma journey.

Find out what Lisa Barrett wrote about mesothelioma clinical trials earlier this month in “Nurse’s Corner.”

The National Institutes of Health states that clinical trials are at the heart of all medical advances. Before any treatments are approved by the U.S. Food and Drug Administration, they must pass strict, rigorous tests and prove successful in a specific population of patients. However, while most mesothelioma patients understand that finding that breakthrough treatment that could mean a longer life and a better quality of life requires trials, and some failures, participating in a clinical trial is not top of their list.

According to a December 2017 report from PBS News Hour, less than five percent of the approximately 1.7 million Americans with cancer have participated in a clinical trial. Clinical trials bring treatments to patients that researchers have spent years developing, yet without enough patients, some of these mesothelioma treatments may never make it out of the lab.

Many patients cite fear and uncertainty, often driven by a lack of knowledge of the clinical trial process, for  their reason for not participating. However, patients who elect to sign up for a trial often have an optimistic outlook for their cancer. They may feel they are doing the most they can to receive the best available treatment. It is this feeling of empowerment that helps keep patients coming to trials.

“Clinical trials really should be the first consideration for patients, because they have the opportunity to get the most current, novel treatment,” said Corilynn Hughes who manages the clinical trials program for Carroll Hospital in Maryland and the larger LifeBridge Health system, in an October 2017  interview with the Carroll County Times.
http://www.carrollcountytimes.com/news/health/cc-cancer-clinical-trials-20171009-story.html

Managing a disease such as mesothelioma can be overwhelming, but getting educated about trials and partnering with your physician from the start may be the key to receiving the best treatment. Let your oncologist and everyone else on your team know that you are willing to participate in a trial. Take the time to visit ClinicalTrials.gov to see if there are any clinical trials for you. In addition, understand how trials work and are regulated, and how you can join – or  quit – a trial at any time.

U.S. clinical trials are closely monitored and are run according to strict guidelines. The National Institutes of Health (NIH) explains that federally funded clinical research has safeguards in place to protect the participants, including explaining to the participants:

• What will happen during a study including eligibility criteria, evaluations and all procedures to be performed;
• The possible risks, benefits, alternatives, and responsibilities of the clinical trial are explained thoroughly to patients before they agree to participate;
• That a clinical study is reviewed by an independent review board prior to the start to ensure that potential risks are clearly stated, and that the study will be closely monitored once it is underway;
• That participation is completely voluntary and at any time you are free to change your mind and decide not to participate further.

In addition, Hughes explains, regardless of the outcome of the trial, patients can return to standard cancer care. “Gone are the days where clinical trials are, ‘We’re going to withhold treatment,” Hughes said.

If you are suffering from mesothelioma, check with your physician to determine if any current studies exist for your particular case. Mesothelioma patients that participate in clinical trials not only help the medical community in general, but they can realize many benefits for their specific medical needs.

“I think the biggest takeaway for everyone to remember is that we wouldn’t have any standard treatments — whether it’s for cancer, blood pressure, diabetes, what have you — without someone participating in a clinical trial,” Hughes said. “That’s how medicine is advanced.”

Approximately 3,000 Americans are diagnosed with terminal mesothelioma each year. There is no cure for the asbestos-caused cancer.

For open mesothelioma clinical trials see ClinicalTrials.gov.

Sources:

• PBS News Hour
  https://www.pbs.org/newshour/show/cancer-treatment-progress-stunted-by-lack-of-volunteers
• National Institutes of Health
  http://clinicalcenter.nih.gov/participate/faqaboutcs.shtml