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Dovetailing on my post from yesterday, I want to write a little bit about what parts of the documentary "Money-Driven Medicine" hit home for me.
Our health care system excels at what is termed "rescue care." So if you get cancer and need surgery, chemotherapy and/or radiation, be glad you live here in the U.S.A. Or if, God forbid, you need an organ transplant, you'll get an organ faster, have more skilled surgeons and have better aftercare here. If you need a complex cardiac procedure, you're in luck; some of the best cardiac surgeons are here too.
While all this expertise came in handy when I was diagnosed with leukemia in 1988, I currently feel extremely frustrated when trying to get the same kind of care and attention for my chronic illnesses: Hepatitis C, type 2 diabetes, fibromyalgia, dysautonomia and chronic fatigue. As a person living with chronic medical conditions, I am displeased, but not surprised, to hear that the American health care system ranks low on providing care to people like me. I already know that the current health care system isn't good at addressing chronic pain, helping people be in charge of their diabetes care, managing chronic infections like Hepatitis C or just simply taking the time to talk to a patient, giving them medical information and helping them make better health decisions.
I also find myself caught in the specialist shuffle. I've been referred to so many different specialists that I honestly have lost count of how many doctors I have seen. Once I get to their office, each one focuses on just one part of my body or one problem. So to the rheumatologist, I am just fibromyalgia, to the hepatologist I am just an infected liver, to the sleep specialist I am just sleep apnea; you get the picture. In the process, they lose sight of the whole me and forget about taking into account my multiple health problems which overlap and intersect and complicate my care.
As much as she want to be my quarterback, my primary care doctor relies on me to give her the reports and information I gather from all the specialists. But she simply doesn't have the time to synthesize all the information and translate it into a care plan. I am my own medical care manager, which concerns me because I am the one who doesn't have a medical degree.
When I first started my new life with chronic pain, the pain medicine doctors concentrated on my spine and wanted to do a whole bunch of injections: trigger point injections, cervical epidural injections, lumbar facet injections and radio frequency ablation. I decided to try the trigger point and cervical epidural injections, but they did not provide much relief. I finally told the doctors I had enough and stopped going to see them, because the only thing all these injections did was make me more fearful of having more injections.
Don't get me started about medial expenses. My husband works for a manufacturer of health care products and the company provides very good health insurance benefits. But with co-pays, deductibles and services not fully covered by insurance, we pay so much in out-of-pocket expenses, we qualify to deduct some of these expenses on our income tax returns. Since I qualified from Medicare in 2007, some of those cost are now covered, but now I struggle with getting providers to follow through and bill Medicare, which is my secondary insurance.
In my own case, I would welcome health care reform that addresses some of these issues:
- improvements to primary care, preventive care and the management of chronic illnesses.
- a more holistic approach to patient care.
- more collaboration and conferencing between medical specialties.
- more patient involvement in the discussion and informed choice of medical treatments.
- coverage for more services, especially for those with proven efficacy in helping patients.
- fewer out-of-pocket expenses and more efficiency in medical billing.