The need for patient education- and how one grassroots organization is helping
I’m sorry, but your grandmother has stage 4 Leukemia. Her prognosis is a few months… at best. We’ll help you prepare in the meantime, and we’ll make sure your grandmother is as comfortable as possible.
I remember everything about that day- the half eaten bowl of Viennese Gulash in the corner of the room, the mangled mess of IV tubes hanging by the bedside, the Spongebob cartoon blaring on the overhead TV. Yes, there was fear, sadness, and disbelief, but there was also something else. Something that propelled me into action- a frenzied, impassioned sort of hope. At 11 years old, I genuinely (not foolishly, as I will later explain) believed I could in some fashion find some treatment that could save my beloved “Ah Ma” (as we say in Chinese).
Admittedly, and unfortunately, at that age I was wrong. Without high school biology, or any sort of medical education, I could not find or understand any of the experimental treatments that might have saved my grandmother. My grandmother, after six months of fighting against Leukemia, passed away. I was torn apart, for I had lost the woman who had practically raised me, but I also would realize that she would have wanted me to celebrate, not mourn her life. After her passing, my grandmother made me promise her something- that I would do all I could to understand the disease that took her away. That I would not allow the disease that took her to be a mysterious abstraction.
Now, six years later, I have a few tools under my belt. High school biology, college-level biology, a few internships at UCSF and Stanford, and a future Bio major at Stanford. I’ve devoted much of my time to understanding cancer and cancer treatment and spreading that knowledge to others through an organization- Project Amare (previously known as Burlingame Cancer Research). And above all else, if I’ve discovered anything, it’s that educating the patient and the family is of great necessity.
The tingling, naïveté yet hopeful feeling I experienced when I was 11 that pushed me to spend long nights learning about cancer has hardly been futile. I may have been too young to understand any of what I was researching, but I truly believe that for patients and their families learning more about their disease provides hope and can even have important implications on treatment.
Let me explain a little about what Project Amare is. But before I go on, make no mistake, I am using this article to promote this organization. But I am doing so with hope that perhaps a few of you readers out there, who may be going through some kind of disease right now, reach out to Project Amare, so that we can put our best effort into helping you.
Amare is a startup non-profit. It uses a single innovative model- connecting research oriented students (college, high school, graduate) to patients who need help navigating the complex field of medical treatment. We work directly with patients and their families by conducting research on the biology behind a disease, the biology behind different treatments, the clinical results of treatments, and by providing emotional support. We’ve been featured by the SF Chronicle, Business Times, and KPIX-CBS, and we maintain a website (bcancerresearch.org), and are developing multiple apps and softwares to help patients.
Now I am heading to Stanford next year, and I plan to further develop this organization to create an organization that spans colleges all over the US and harnesses the power of youth to help patients. On one hand, this allows students to apply their knowledge; on the other, it helps patients: “Helping people today, building for tomorrow… “ Imagine that!
So, why is patient education important? Well, first off, many people do not have access to the greatest health-care out there. Additionally, a typical doctor sees over 2000 patients every year and is overwhelmed with work at any particular time. It is difficult to admit, but doctors are not perfect. They are human, and make mistakes, which is why an empowered, educated patient is crucial to health-care. An educated, proactive patient (and their family) can bring treatments to the doctor’s attention and can scrutinize the doctor’s decisions I’m a man of stories, of examples- so I’ll share with you an example.
A few months ago, I met a mother (patient privacy, so I will not reveal name) who our organization was working with at the time. Her daughter had been diagnosed with neuroblastoma, a rare childhood cancer of the brain. After a two hour conversation, one line from her stood out to me.
My daughter was nearly killed about 14 times by doctors at UCSF and Stanford. Some of the time, we knew the operation/treatment was risky. But other times, it was mismatched prescriptions, the wrong kind of chemo- mistakes that shouldn’t have happened. I had to take an active role in her healthcare, switching her to different hospitals when appropriate, learning as much as I could about brain cancer in the span of a few weeks.
I am certainly not a healthcare skeptic. I believe in the talent, skill, and goodness of nearly all doctors and healthcare providers who have matriculated into the healthcare system. I am telling this story, not as an assault on doctors or healthcare, but merely to show that patient education is beneficial for all. It helps patients and their families but can also check the mistakes of doctors before they occur.
For this mother, researching and learning all she could about Neuroblastoma helped her ensure her daughter had the best shot possible at living. I talked with the mother a few weeks ago. She is using her experience with neuroblastoma to help other families who have cancer diagnoses.
I will give one more example. This one is rather extreme, so prepare yourselves!
A few days ago, I watched the film Surviving Terminal Cancer, on http://www.survivingterminalcancer.com/. It tells the story of Dr. Ben Williams, a professor of psychology at UC San Diego, who was diagnosed Glioblastoma Multiforme in 1995. Glioblastoma is a cancer of the brain, and is perhaps the most aggressive cancer of them all.
Dr. Williams was given a few months to live, and was put on chemotherapy, but he decided he would do everything and anything to extend his life. Against the will of his doctor, he began his own research, began self dosing, and combined a bunch of different drugs. Dr. Williams has not had a recurrence in 19 years. The film also features a few other people who have a similar story to that of Dr. Williams.
I had a few takeaways from the film. First of all, though, I want to say that the film’s results should not be taken as an assault on healthcare or a message to patients that they should begin self dosing and should not listen to their doctors. Ben and the people featured in this film are a few out of the many who are diagnosed with GBM and cancer, and we really don’t know what it is that defeated their cancer. However, I do think that there is merit in William’s story.
The impact that patients can have on their own healthcare is not to be taken lightly. And, although patients should listen to their doctor’s recommendations, patients can often bring treatments or supplements to the attention of their doctors.
Often times, there are even natural supplements that patients can take that are non-toxic and do not interfere with their treatment. And, as the film mentions, the combination of these treatments can make the body a very hostile environment for tumors.
The organization, Project Amare, aims to help fill a void in healthcare. We want to empower and educate patients, and in doing so, help redefine the “patient-doctor” relationship, to one in which the patient has a voice and an influence.
This article is a part of a series of blog posts, focusing on my observations and ideas for reforming health-care, and what my organization can offer. If you would like any help researching a disease or some kind of treatment, or if you just need someone to talk to, please email me at firstname.lastname@example.org or email@example.com
Originally published at blog.stupidcancer.org on February 10, 2017.