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Instead of viewing clinical trials as a last resort, patients with pancreatic cancer and their oncologists are encouraged to investigate clinical trials from the start of treatment.
For most cancers, clinical trials are offered to patients whose first, second, or third lines of treatment have not been successful. But pancreatic cancer requires a different approach. Instead of viewing clinical trials as a last resort, patients with pancreatic cancer and their oncologists are encouraged to investigate clinical trials from the start of treatment.
An estimated 66,000 people will be diagnosed with pancreatic cancer this year. According to the National Cancer Institute, that’s about 13.3 new diagnoses per 100,000 individuals. The rate is higher for Black Americans at 16.2%. These numbers may seem small compared with other cancers, but the reality is harsh. The survival rate is about 13%, making pancreatic cancer the third deadliest cancer after lung and colorectal.
Because pancreatic cancer is so difficult to treat, oncologists are encouraged to introduce clinical trials to their patients from the start of treatment. Even when a tumor is found at an early stage and surgery is an option, patients could get access to cutting-edge treatments right away that are otherwise not available. There are trials underway for patients in all stages of the disease; participating in clinical trials offers an opportunity to receive life-saving treatments immediately.
Getting into a clinical trial before therapy begins is ideal. Trials require a specific Eastern Cooperative Oncology Group status, a certain level of health, and some trials are reserved for untreated patients or require washout periods – time to clear the body of previous treatments. Because pancreatic cancer clinical trials include the standard of care by default, patients will still be given treatment that already exists for pancreatic cancer, but they may also receive a new drug being tested. Think of it as Standard of Care Plus.
Patients may be apprehensive about the risk of participating in a trial. Some may need reassurance that trials have extensive safety measures in place and have undergone stringent review by scientific and regulatory boards. These boards continue to monitor the trial as it is underway and can take action as needed. This process not only keeps participants safe, but the heightened attention can advance the treatment and care options along the way.
Patients need to understand upfront the potential costs of participating in a clinical trial. The treatments given during a clinical trial do not carry extra costs, but there may be additional travel expenses and testing. Participants may also need time off from work. Some trial sponsors cover these extra expenses; others don’t. Either way, the logistics of any trial need to be explained to the patient before they participate. The Let’s Win Pancreatic Cancer website is equipped with resources that provide a fuller explanation of clinical trial participation.
Despite the possibility for better outcomes and the variety of open trials, less than 5% of patients with pancreatic cancer are enrolled in them. Some patients are too ill to participate; others are unaware of the benefits or misinformed about how they work. Many are daunted by the process overall. Helping a patient understand the benefits and caveats of clinical trials can give them the knowledge and confidence they need to seek and enroll in a trial.
Finding a trial is a straightforward process. Years ago, the best option for finding a clinical trial was to look on the National Institutes of Health’s ClinicalTrials.gov website, which can be daunting even for physicians. Today, a number of pancreatic cancer advocacy organizations offer online services to help doctors and patients narrow down pancreatic cancer trials by disease stage, location, and other factors. In addition, Let’s Win has a clinical trial finder that offers online and phone service. Not everyone will find or qualify for a clinical trial, but patients can continue looking for other trials as their treatment progresses because the right opportunity may open up at a later date. There’s no guarantee that any treatment will be successful, whether it is part of a trial or not. However, receiving extra care through cutting-edge monitoring could make a difference.
The benefits of taking part in a clinical trial extend beyond personal gain. Patients may feel inclined to participate with the understanding that the trial may not only help them, but other patients in the future. People are living longer and better today because of clinical trials.
Racial disparities in clinical trials are vast, which is problematic as we try to achieve comprehensive results. For example, Black Americans comprise 14% of the US population but only 4% of cancer clinical trial participants, according to the Pew Research Center.1 The participation rate for Hispanic patients is equally low. Ultimately, researchers won’t know if a drug works for everyone if it hasn’t been tested with a diverse pool that reflects the population as a whole.
Reaching underrepresented communities and encouraging clinical trial participation is the responsibility of everyone who interacts with a patient, whether it is outreach through doctors and trusted partners or communication regarding the safety of trials.
Each of us has a part to play in finding the right clinical trial for today’s patients and creating better treatments for the patients of tomorrow. This reality can be achieved through the following:
Most importantly, direct patients to the Let’s Win Clinical Trials home page. Enabling patients to participate in clinical trials is a win-win for all and is important in securing high-quality, equitable care for every patient.
This blog post was written by Let’s Win Pancreatic Cancer, an organization that guides patients who have been diagnosed with pancreatic cancer with vital information for better outcomes.