Atypical Care and the Federalization of Health Care
Posted by Mike O on July 12, 2009
Here’s an area for concern with increasing federalization of health care; how ‘atypical care’ will be handled.
My son was diagnosed with NF2 three years ago, a 1-in-40,000 genetic condition resulting in numerous benign tumors in the brain, spine and nerves. The severity and speed of NF2 varies widely (we are blessed that his case is on the milder side), and treatment approaches are constantly evolving. The current conventional wisdom is- in serious and complex cases- to get a second opinion. But what happens when there are multiple high specialists involved (neurosurgeons, neuro-oncologists, radiotherapists, etc.)… and the opinions on approaches vary widely? You end up like us, visiting over a score of doctors across hundreds of miles, lugging a stack of MRI films that now weighs 51 pounds. Had we not (and done a tremendous amount of research on our own) my son would have already gone under the knife twice; the result would be complete paralysis of the facial muscles, partial paralysis of the palate and swallowing, and complete deafness on the left side, as well as the need to wear braces on both legs. That fate may now be postponed for many years.
With federalization, make no mistake; rationing of health care will happen and costs will go up. It has never failed to do so in any increase of government in medicine, anywhere in the world. What we have gone through- in as quickly as we have done it- simply would not be possible for anyone. Sadly, some in the NF2 community currently do not have the resources nor do the due diligence we have done. But increased federalization stands far less chance in providing them those options, than in taking them away from others.
And the only long-term hope in NF2 is continued innovation; innovation paid for with the substantial return on investment that medical research is currently capable of producing. For example, Brain Stem Implants (BSIs) are essential to provide a sense of hearing to people deafened by NF2. The NF2 community hopes that advances in other areas, such as PARP inhibitors, can be found to benefit the more esoteric stuff like NF2. But those checks are only done if the funds are available from the large ROI elsewhere. And those ROIs will not be available with the government controlling too much of what goes on in the medical realm. One only has to look at where the majority of medical advancement occurs in the world to understand the value of our system.
Understand, the current system is very far from perfect; it can be a nightmare for the involuntarily uninsured or underinsured. (I have no empathy for the voluntarily uninsured, nor the illegal alien; they need to take personal responsibility for their voluntary actions). However, government is substantially more a problem than a solution in the medical field, both from a bureaucratic and from the judicial (lawsuit) sides. The catastrophic and uninsured problems can be addressed without going to a single payor or crippling the current private system with new rules, regulations and tax disadvantages.