Opinion: I have brain cancer. Drug companies and med schools should be compensating me for my expertise

Thanks to a surprising and devastating diagnosis, I know more than most physicians about what it’s like to live with the brain cancer known as glioblastoma, everything from self-titrating my anti-epileptic medications to making sure the right ICD-10 code appears on my MRI referrals. As much as I’d rather not have this expertise, I’ve learned that it is extremely valuable for medical students, physicians, people with brain cancer, pharmaceutical companies, and others. I’ve also learned that it is undervalued.

Since I was diagnosed 20 months ago with glioblastoma — a disease I share with Sen. John McCain and about 18,000 other Americans — I’ve tried to learn all I can about the disease, its treatment, and.