Al's Comment:
Navigating through a brain tumor diagnosis can be an overwhelming experience for anyone. The shock of the diagnosis, coupled with the pressure to make life-altering decisions within a short time frame, can be daunting. Moreover, these decisions are often made without any prior knowledge or experience, and under the influence of doctors who may have financial conflicts of interest.
The doctor you initially consult with could potentially lose over $100,000 in billing for the first few months of care if they refer you to the "best" doctors. Even these "best" doctors tend to recommend treatments they have access to. Every day, I encounter patients who may not have made the best decisions because they were not informed about all the available options. The number of decisions to be made can be overwhelming. Having a third-party navigator to assist with these decisions can significantly impact the outcome and reduce stress levels. We are currently working to demonstrate that our navigation program leads to better outcomes.
Doctors' biases are not always financial. Some doctors may have personal preferences against certain treatments, even if evidence supports their benefits. Or they may simply not have enough time with you to go over everything you need to know. They might make decisions on your behalf without fully understanding your feelings. Patients should be provided with all the information in an understandable format, enabling them to make informed decisions.
Optune and GammTile are two treatments that have proven benefits, yet some doctors won't even mention them. If they do, they might discourage you from using them. With Optune, they might emphasize the inconvenience of usage, including the need to shave your head. Some doctors might feel it's better to live the remaining months without these hassles, while others believe the potential long-term survival benefits outweigh the inconveniences.
Unfortunately, the best time to start using Optune is as soon as possible after diagnosis, during or after radiation. Medicare guidelines state that they will only cover Optune if it's started within seven weeks of the last radiation dose. However, many patients prefer to wait until all other options have failed before trying Optune. This approach is not effective, as the chances of success are significantly reduced if not started early.
With GammaTile, the decision to use them must be made before the first (or subsequent) surgery. The rushed nature of these decisions often means that the topic doesn't come up in time.
Then there are clinical trials. Your doctor may inform you about the trials available at their hospital, but they might not be aware of all the trials being conducted there. It's rare for them to evaluate all trials and help you choose the best one for you. Some trials have to start before that first surgery and you are so rushed to get into surgery that you do not find out about those options in time.
This is where a navigator can be invaluable. A third-party individual with no financial conflicts of interest, who is familiar with the options and has access to data, can educate the patient about the available options and help make these difficult decisions. We offer such a service, currently free to patients, funded by donations. To avoid conflicts of interest, we do not accept corporate sponsorships. However, raising the necessary funds to keep this program free for patients is becoming increasingly challenging, and the program is overloaded with requests. If Medicare could cover this service, we could hire more navigators and assist more patients.
