Health Care Reform and Children with Chronic Conditions

Living in the DC area, surrounded by neighbors who are lobbyists, Hill staffers and professional thinkers at think tanks, I tend to take my political opinions seriously. There is plenty of lively discussion to go around at playgrounds and carpool lines.

But I have to confess something. I have been harboring mixed feelings about health care reform. Because of this, I haven't done all my research, chatted up those in the know and watched the news coverage. But today, I read all the posts on the various Silicon Valley Moms blogs about health care reform. Then I started doing my research.

Health care reform is inevitable, whether it happens now, or when the system completely collapses. Each year, a larger portion of my husband's paycheck goes to our insurance premiums. And yet, our out-of-pocket expenses for care also climb every year. I have to admit, I have been doing a bit of rationing of care on my own -- failing to schedule a follow-up with my own doctor and even putting off taking one of my children for a cardiology follow-up because our share of the expenses for the doctor visits and tests is becoming astronomical. Just getting ear tubes for my youngest daughter earlier this year cost us well over $1000.

And WE are the lucky ones. We HAVE insurance, and good insurance at that. One of my biggest worries in the current economy is that my husband will lose his job and while the loss of his paycheck scares me, the loss of our health insurance terrifies me.

One of my children has a pre-existing condition, a chromosomal abnormality -- Turner Syndrome. If we were to lose our group coverage, she would NEVER qualify for private insurance. And while her health is fairly good, she has a LOT of appointments and expensive tests every year to make sure we keep her that way.

And yet, having to rely on a government-based health plan, should we need to, makes me nervous as well. Right now, I can take my daughter to almost any doctor I want. I have searched out the best specialists for her particular issues and those are the doctors we see. I can travel to any city in the U.S., and indeed may soon take her to Oregon to see a specialist there. While the travel expenses are my own, the doctor visit will be covered.

Currently, I can ensure that the designated protocol for caring for a child with Turner Syndrome is followed, that she sees each doctor and gets every test and preventative measure that will benefit her. We elected to have a PPO instead of an HMO because I wanted the additional freedom from paperwork and referrals. I do my research, I make sure the protocol is followed and I make the appointments. I can't imagine if that control were taken from my hands if we were covered by a publicly-run plan.

For most of us with private health insurance, the plan is that things would only change for the better. President Obama promises an end to pre-existing condition exclusions and lifetime maximum benefits (another fear for my daughter, that she will max out her $1 million benefit limit) and reasonable limits on out-of-pocket expenses.

With the addition of the safety net of a government-provided plan, it sounds perfect. But yes, my fears remain. Will the system of private insurance as we know it be able to withstand the competition of a government plan? Will employers decide that the costs of offering a private plan are greater than additional taxes imposed to support the government plan?

Despite my best efforts, will I be left in a situation that will limit access to care for my daughter?

These are my fears and my personal situation. However, the greater reality is, there are nearly 46 million Americans who have NO health insurance. FORTY-SIX MILLION. It's appalling. That doesn't even begin to count the people who have insurance but are crippled by mounting medical bills or are rationing their own care to avoid additional costs.

Who can deny the system is broken? That something must be done? It is time to find the solution. We must find a way to ensure that our children (including those with medical issues) will never be without adequate care. That changing jobs or starting your own business or being unemployed will not cause a health care crisis. That families of all income levels will not be buried in medical debt by skyrocketing premiums accompanied by staggering co-pays when a medical emergency arises.

It would be easy to sit back, with my private insurance, and say I am against change because of what it might mean for my daughter. But I'm not willing to do that because I know people with no insurance. I know people who have sold their home to pay medical debt. I know people who struggle daily to meet the obligations of medical bills. There but for the grace of God go I.

Yes, I have fears, and for those of us with a family member with a chronic health condition, it is our responsibility to make our voices heard, to ensure that reform does not limit access to care. But it is also our responsibility as citizens to help forge a solution that provides better health care for all of us and that we leave our children with a better system than the one we inherited.

This is an original DC Metro Moms post. You can find Sue, complaining about laundry and medical bills, at My Party of 6.