At the end of every PKD Educational Seminar I have attended, there was always one question that broke my heart. A mother or father would raise a hand and say: “I am afraid, for health insurance reasons, to get my child tested to determine if they have PKD.” I would think to myself, how awful that the deciding factor on whether or not families seek information about their child’s health is based upon a fear they would be labeled with a pre-existing condition. And how awful that such labeling could possibly lead to their children being denied medical insurance.
I am not a political junkie and I surely did not read the whole Affordable Care Act, but the one item for which I am very grateful is that I no longer have to fear being denied health coverage because I have a pre-existing condition. What a relief to know that I don’t have to hide this major component of my life– in which I have no control– from my employer and my health insurance provider. My heart is happy that those parents can now get their children tested and there will be no more waiting games, wondering if they have passed PKD on to their child.
I now breathe a sigh of relief knowing those PKD families near and dear to my heart no longer have to be afraid to get their children tested and that they will not be denied health insurance. This is huge news for the PKD community and I would like to know how you feel.
I invite you to watch this video discussing the Affordable Care Act, which features a volunteer of the PKD Foundation and friend of mine, Rabecca Ranaldi.
Also, in case you missed it, my webinar, Keeping a Positive Attitude with PKD, is now available online! Watch it here.
thanks for pointing this out Valen – such a HUGE thing to consider! I guess I am somewhat of a political junkie – and proud to say I stand 100% behind this and hope that people really take the time to understand what it means and how many it will truly benefit!
Insurers can’t deny you. But can’t they still charge you a mint for it? I’m also worried that my employer (225 employees) will dump its benefits and put us all in the government health insurance pool. What’s to prevent them from doing that?
Hi David,
The Kaiser Family Foundation has a very helpful website that explains the inticacies of the health care law. I found this flow chart helpful. http://healthreform.kff.org/the-basics/employer-penalty-flowchart.aspx
Employers who employ more than 50 people face fines if they deny health coverage. Since they are not required to provide health insurance at all now, I can’t imagine why they would choose to dump benefits after the law passes. But I am very willing to listen and learn if there is a reason to believe they will do so.
Please remember that our children may not be denied health insurance, but it will extremely expensive to purchase life insurance. It is still very risky to have the test done on our children before they suffer any symptoms. PKD is still a risky diagnosis.
Yes, it is comforting as a middle aged adult to know that I won’t be denied group health insurance because of my PKD. Still not sure about my children’s future though.
Thank you all for sharing your comments and also for helping to provide valuable information to each other. Wonderful to see all of you helping each other out…that is what this blog is all about…makes me happy to see this happening already! 🙂
Date: October 19, 2017, and Healthcare rules are up in the air. Does anyone have current advice or resources on how to decide if a PKD diagnosis or ruling out of PKD, should be pursued in a 13 year old girl that had a few cysts show up on an ultrasound.