What would I do if I had a million dollars to spend however I wanted?
After paying off my mortgage…and if I didn’t have this autonomic disorder…and my neurological issues in my back…I would dive back into the biotech industry and in my spare time, I would travel around the U.S., speaking at as many professional medical conferences as I could fit into my schedule. I would speak about the importance of doctor-patient communication, the necessity for treating physicians to stay VERY up-to-date on the research and treatment developments in their area of practice. Not only would I express the importance of this based on the decades of experience I have in advocating for my own health care, but for my mother’s health care as well. I would back up my personal experiences with examples from the “standards of care” set forth by insurance companies and medical societies and compare them to the FDA-approved treatments that are available to US citizens that are almost completely ignored by a significant amount of our doctors. These doctors are the people we trust to give us and out loved ones the best care available, the professionals we trust to stay current on advances in their fields through CMEs (continuing medical education credits) and to recommend the most helpful options available to improve and prolong their patients lives.
My experiences with many issues since the mid 1980’s: getting the proper treatment for pre-cancerous lesions on my cervix; obtaining a less-invasive operative alternative to remove a large ovarian cyst (I actually had to write to a senator for this one!); presenting my PCP with excerpts from a medical text that explained the symptoms I had been having that was soon diagnosed as Reynaud’s by a rheumatologist that I was referred to; convincing my doctor to test my blood for autoimmune markers that proved that I had an active serious autoimmune disorder; insisting that my mother’s physicians pursue more aggressive treatment when she had a series of strokes at age 70; finding a physician that specialized in treatment of neurological conditions that caused pain patterns similar to what I had been experiencing since my two failed back surgeries; researching conditions that cause the growth of abnormal breast tissue that convinced my doctor to refer me to a surgeon that eventually removed the equivalent of 600cc of abnormal tissue from my underarms; presenting my PCP with research that convinced my PCP to refer me to see an endocrinologist to explore the reasons why I was experiencing unexplained painful breast growth (at age 46!) which ultimately lead to the discovery of not only a brain tumor, but a suspicious lump in one of my breasts; and now, the research from the most comprehensive programs that treat autonomic disorders (sometimes, simply being well-known in the field doesn’t mean that person is a good diagnostician – as I recently learned in an unfortunate way).
It’s been a busy 27 years. Translating my research skills from traditional materials (texts, professional journals and digests) to the Internet was smooth and easy for me. I was glad to be able to access many of the materials that previously had been unavailable to be because I was not a medical professional. Every year, more and more materials are made available on the Internet to everyone at no charge, making it much easier for people of all socioeconomic levels to obtain information about their health conditions that just may improve the quality their life, or the life of a loved one.
However, people in the U.S. in the 21st century should NOT have to spend their time combing through materials on the Web written in technical language that they may not clearly understand. Internet connectivity is widely available to everyone, everywhere, at all times. There is NO reasonable excuse for doctors and other medical professional NOT to utilize this technology when they see each and every patient with questionable, suspicious or unique symptoms. Internet searches take milliseconds to return results to an inquiry. It is entirely realistic to expect our highly compensated medical professionals to use technology to obtain information about the best treatment options available for their patients. It’s time that we all started making it clear that this is what we. as medical consumers expect and what we, as human beings, deserve.
It will take lots of lobbying by patient advocacy groups and medical societies to convince the insurance companies to change their archaic standards of care upon which they base their coverage for medical tests and procedures. The changes being suggested by Obama’s committees created by the Affordable Care Act are releasing recommendations that are already proving detrimental to the health of Americans are turning the clock back on treatment alternatives available to everyone. It is frightening. I doubt that I will see much change in my lifetime unless medical professionals begin to rally on behalf of their patients and put patient care ahead of profit margins. All of the reseach will then be moot – our care dictated by political groups driven only by cost concerns.
I am only one person, but if I can influence a few people to not sit idly by and let their doctors ignore their symptoms – if I can teach a few people how to effect change for themselves and their loved ones, then I will have succeed in sharing the gifts I have and the skills I have learned on the rough road I have been traveling to try to maintain my own health.