August 13, 2009
The Cystic Fibrosis Foundation is following the health care reform discussion very closely. We commend those who are working to create a health care system that would improve care for people with cystic fibrosis and other chronic diseases.
Cystic fibrosis is a costly disease to treat, and increasing numbers of people with CF are struggling to pay for the care they need. In a recent survey, one in four people with CF reported delaying or skipping care because of cost. Medical costs for people with cystic fibrosis are nine to 13 times higher than for the average health care consumer.
It’s important that people with cystic fibrosis get the care they need. To ensure this, the CF Foundation is pressing Congress to include specific reforms that are essential for the treatment of CF. Because the health care debate is still evolving, the Foundation has not yet taken a position on any particular health care reform bill. However, we are pleased that the plans being discussed contain many of the provisions the Foundation supports, including:
- Ensuring that people with CF are able to receive quality, comprehensive care from an accredited CF care center, and can choose their health care providers even if they switch health plans.
- Reducing restrictions on coverage, including annual and lifetime health insurance caps, as well as limits on pre-existing conditions. We also support provisions that allow dependents up to age 26 be covered by their parents’ insurance plan.
- Protecting against exorbitant out-of-pocket costs, which helps protect patients and ensures they can benefit from specialized medication without unreasonable economic burden.
As this landmark debate unfolds, the CF Foundation continues to educate elected officials about the unique needs of people with CF to ensure the health care system can best deliver exemplary care to extend the quality and length of life for all those with cystic fibrosis.
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I am an advocate for the initiatives that the CF Foundation is supporting. However, I can say - emphatically - that I don't want my health care to change. I have been extremely lucky in always having good coverage through my employer but I have worked hard for that coverage. That's not to say that it's always been perfect and I haven't had to fight many battles with my insurance company, but I've always had access to the care that I need and I've always had my bills paid - with my own fair share of co-pays, deductibles, etc.
I know that there are many CF patients that can't work due to poor health. I myself have been out of work before on short term disability, long term disability, and I dread the day that I have to go on permanent disability. That day may be sooner rather than later.
However, I take great umbrage at the number of CF patients that could work and don't. If my clinic is any representation of the average, I know that there are a number of people that don't have a job - by choice. How dare you complain about your coverage, or lack thereof, when you do have done nothing to better your situation and you could?
Healthcare isn't free. It never will be. The cost might be monetary or it might be quality of life. Healthcare is a benefit - one that more people should have, I agree. But it's not free. If the government is going to offer healthcare to the masses, how do we pay for it? Taxes? Taxes suck, but I can deal. Managed care? Managed care sucks more, but again, I'd survive. LESS care? NO WAY, NO HOW.
The thought of a government managed insurance policy strikes fear in the heart of this little banker girl. Especially if paying for this program means I can't maintain my current level of care. You may call me a terrible person, but I am not willing to sacrifice my care - THAT I WORK HARD FOR (my coverage) - just so somebody can get a free hand out.
Reform of the insurance industry cannot be the equivalent of "Cash for Clunkers."
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