I've been thinking about this topic for the past two months as politicians go back and forth. What do you all think about what is going on? Do you think it will hurt those with MC?

What is the treatment that people in Europe and Canada get that have MC? Do we know if any have been denied treatment because of MC if they had cancer or heart problems? What time frame do they wait vs. people without MC?

Are there stats on any of this? Just want my son to have the best health care possible and no discrimination. Because, I feel if we are to reform our health care to not discriminate against those who can not afford it that's great but I don't want those who have an ailment to be discriminated against in order to foot the bills for those without insurance who are discriminated against.

That would amount to a double discrimination. The poor get insurance and the sick with a rare disease pay into the system but they loose out.Curious???

I have had Medicare as my primary insurance for many years because of disability from West Nile Virus. I have never been discriminated against in any way and I have not had any trouble finding doctors. One thing I really like is that I don't have to get a referral for specialists. I do pay for a supplement which covers the copays and deductibles.

So if Medicare was going to be the model for a government option I would have no qualms (can't say the same thing about Medicaid). However the new plan apparently cuts Medicare quite a bit and I don't think any of us can know how that's going to affect us until it happens. There are just too many variables to consider and how it's going to play out is just pure speculation at this point.

Hopefully some of our forum members from countries with socialized medicine and government sponsored healthcare will jump in. We've had plenty of posts from the UK/Canada/Australia in particular mentioning very long waiting periods for appointments and I have several friends in those countries which confirm to me that this type of healthcare comes with a cost in terms of sacrifices.

I do see a lot of waste in the system here as it is now and I'm sure Lois would confirm that. For instance every time my mom fell at her nursing home and bumped her head they would do a series of x-rays and usually a couple of CT scans. Most of it was totally unnecessary.

What I would like to see is a budget given to us to manage. It could be tiered, so that different conditions were allowed different budgets and we could shop around and get the best treatment for the price. I think consumer driven competition would help overhaul the system by exposing incompetent doctors, reducing prescription costs and encouraging us to educate ourselves and take responsibility for our health. Of course emergency care should be covered no matter what...but managing the long-term treatment of various illnesses and genetic conditions is one of the biggest issues right now.

I don't think we will be affected at all by whatever program is implemented because we don't have a life-threatening condition. However I am concerned that it might affect those with muscular dystrophy. I think they're already seeing some reductions in help for adaptive aids like wheelchairs.

Jan

Hi -

I am very strongly in favor of a universal health program, with a public option as one of the choices. In my professional experience, I have seen the incredible wastefulness and arbitrariness of private health insurance companies, as well as Medicare and Medicaid.

If all of the programs were managed efficiently, equally and effectively, we would have superb coverage and care for all, and probably a MASSIVE decrease in the costs of diagnostics, health care delivery and records, as well as pharmaceuticals. The reasons insurance companies and medical groups employ nurses as utilization and quality analysts and case managers are to review cases, act as patient advocates (run interference on behalf of patients, so 'bean-counters' don't arbitrarily deny medically necessary care!), and because NCQA (nat'l quality overseer) and other oversight groups mandate it - and because it is a very successful way to identify potential litigation situations, when someone tries to deny care for a medically necessary or prudent situation.

"I do see a lot of waste in the system here as it is now and I'm sure Lois would confirm that. For instance every time my mom fell at her nursing home and bumped her head they would do a series of x-rays and usually a couple of CT scans. Most of it was totally unnecessary." - Jan

Jan - This is a double-edged sword. On one hand, it is often totally ridiculous and wasteful to do all this testing when you are sure nothing happened - but on the other hand, God forbid a fall causes a hemorrhage or was caused by a TIA, let's say. If the patient suffers because of it, the nursing home stands to lose their license, or at least an enormous amount of money in a law suit - because everyone sues for every little thing nowadays.

I could have been a multi-millionaire due to an appalling case of malpractice about 15 years ago, but I was so naive and NON-litigious that it never occurred to me until just a few years ago.

Ooops - I also wanted to mention that one of the things which is repeatedly stated about the plans for a new health care paradigm is that "pre-existing conditions" will NOT be reason or cause for non-coverage. As I read this, it will mean that even orphan diseases and rare disorders will be covered, or at least that they will not preclude one from equal coverage. I'm watching and listening carefully, as this issue is extremely interesting and important to me, due to the number of years I invested in championing it.