Please sign this petition: Require free access over the internet to scientific journal articles arising from taxpayer-funded research.

In the past when researching scientific health studies, I’ve driven to learning hospitals (UCLA, USC) to read up on current clinical trials, medicine and protocols being used on adrenal cancer patients.  At USC I’d show my patient card and usually they’d let me access the database to read articles in full, instead of just the summary. Once in a while I’d come across librarians who’d tell me that the database was for medical students only. That would hurt, being a patient of their institution, but I knew it was their policy. Out of desperation one night, I paid a ridiculous amount to read what the findings were on a clinical trial.  Having one kidney remaining always got in the way of my decisions.  There’s not one protocol, or one method, for treating adrenal cancer and I was unsure as to what path to take.

It’d be nice if you could do this from home. From home, research can be done by anyone and on almost any health condition or medicine. Go to PubMed and enter your search criteria. You’ll usually be able to read the short abstract or summary, instead of the full article.

Maybe one day, when all the research and data is shared, we’ll be able to find the right methods to prevent cancer and other health ailments.

Thank you.

Today marks ten years of my being cancer-free. In this photo, I had been recovering at the Mayo Clinic in Minnesota for almost a month. By then I had lost my left kidney, left adrenal gland, a rib, a few lymph nodes, and 25% of my liver.

There have been times that I didn’t quite understand why it was that I was still here. My cousin who is an oncologist even said that mets (metastasis or spread) to the liver is usually fatal because of all the liver’s network of blood vessels. Tumors are kept alive thanks to these vessels, yet the good doctors at the Mayo Clinic were able to resect the part of the liver where my adrenal cancer (supposedly from 1998) had spread. My liver has grown back quite healthily as shown in yearly CT scans.

I thought I knew everything about faith when I was first diagnosed in 1998, that I had dealt with cancer and understood life and religion. But when it came back in 2002, I dropped to my knees again and came to realize that I was not even half-way to understanding what faith was really all about. Feeling a bit vulnerable so will zone back out and continue with this flashback to Minnesota in February of 2002.

Thanks to my sis who was with me in Minnesota to wheel me around in the snow. We discovered amazing underground passage ways and skyways between our hotel, the hospital, movie theater and bookstore without ever having to leave the buildings. Here we are playing in the snow outside of Barnes and Noble which was previously a movie theater before being converted into a bookstore.

Hoping someone newly diagnosed with adrenal cancer finds me instead of the searches that bring up “less than five years survival” types of statistics.

To your health and your faith.

If I could have invented one thing, it would have been a medical database of patient profiles and treatments that would be accessible to the entire health community. Patients, caregivers, doctors, researchers, and pharmaceutical companies would be able to share what they know. PatientsLikeMe.com allows patients to take control of their health by sharing their health, connecting with others going through similar situations and learning from each other.  I’d love to start an Adrenal Cancer community on PatientsLikeMe and have inquired because currently it looks like it’s open to a handful of other health conditions. 

The Openness Philosophy of PatientsLikeMe.com

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”
 
“We the people have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost.”
      -Jaime Heywood
 

Please watch this video: Jaime Heywood on the big idea that his brother inspired.

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