Reading about the current proposals floating around out there, my heart sank. I spent much of last night crying. It’s clear we’re not going to get any health care reform legislation that is going to help people with orphan diseases, or remove the cost of their care from the national budget.
Most likely families like mine would be exempted from buying coverage, because we have serious, chronic, progressive diseases, and so our premiums are insanely high. We can’t go through any insurer that restricts access to physicians, because there may be 2-3 experts in the world who know how to diagnose and treat us.
The problem that Congress and the President won’t tell you is, we’re the expensive uninsured. Sure, getting the vast majority of the un/underinsured will save some dough, since providers and hospitals will no longer be eating the cost, but most of those people don’t use a whole lot of health care. Those of us with orphan diseases can use 100 times what your average family does per year, and you, my dear taxpayer, are paying for it one way or another.
There’s millions of us. You do the math.
My friends with Medicare get most of their orphan disease expenses covered, and those who connect with experts and advocates via patient support networks and use their assistance to file their appeal are usually successful. I can tell you that’s rare with private insurance. After a year and a half with no access to care under the HMO we could afford, impossible through an HMO.
How do we cover these people?
How about allowing people with chronic diseases who can’t get insurance any other way to buy into Medicare?
Medicare can provide care more cheaply than any insurer, and it’s more comprehensive than most. Certainly having people buy into Medicare at the 8% cap that’s been suggested for families buying other insurance would have them paying for a chunk of their care at a more affordable rate, and would allow them access to care that would keep them healthier (and less a drain on the system) for longer. An 8% premium would be tough, but many of us have been paying out of pocket so long, that even if it’s more than we were spending, we’d gratefully pay it in order to know we’re covered if the worst happens (which it inevitably does with chronic diseases).
I can’t imagine what objections anyone could have for this. It would save taxpayers money in the long run. If there’s one group for whom preventive care is emphatically cost effective, it’s people with progressive diseases. It’s such a small slice of the US, that it can’t feasibly be considered to be a back door to socialized medicine, any more than disability or Medicare itself. Similarly it won’t be an unfair competitive advantage against insurers. In fact most insurers would heave a huge sigh of relief not only to have more insured people, but not to have to insure us. We’d be paying into this care, rather than fighting for disability coverage, therefore we can continue to work, and be tax-paying citizens ourselves. In fact some who otherwise must apply for disability could be treated early enough in their diseases that continuing to work is a feasible option.
How about Medicare for many?