One way we learned was from role playing! We had two volunteers pretend to be consumers calling the payer (Michelle). Michelle tested them by deflecting their questions, providing wrong information and putting them on hold--a lot.
Michelle really set the tone. “For years we've been asking to be treated like everyone else. Well guess what? Now we are!” Payers now look at us not the helpless victims of a genetic disorder, but as patients with medical needs who have bills that must be paid. Unfortunately, our former reasoning of “But, we have hemophilia! We’re special!” is not going to work anymore. We need to get smart, savvy, and strategic.
Michelle asks: Is your request to the payer a question of access [to a particular brand of factor or HTC or home care company]? Or is it a preference issue? “We can’t spend time on preferences anymore. If you want homecare company A and not B, and B is not in network, then you must use A, or pay a lot more for B."
She reminded us that if your desired factor brand is not on the formulary (the list of drugs that the payer will cover), that doesn’t mean you aren’t going to get your drug; you’ll need documentation from your medical provider, and it will cost you more. And if your factor is not on formulary, check the major medical side of our policy—it might be there, and might be covered.
Bottom line is we need to accept a new reality in insurance. We need a personal budget for out-of-pocket expense each year. We need to read our insurance policies carefully and completely, each year. We need to open and read those letters from the insurance company. No short cuts!
Michelle stressed that we must take responsibility for our own insurance situation, even as the NHF, HFA and our local organizations continue to advocate for us on many levels. It starts with each of us first and foremost. Start with your policy: if you have private insurance, speak with your human resource department to get answers. If on Medicaid or Medicare, visit your social work at your HTC.
You can’t always get what you want, but you can read, document, question and hope! Working together, we will get many things need and maybe even want.Good Book I Just Read
Selling the Invisible by Harry Beckwith
Written in 1997, this book is a bit dated as it doesn't mention email, cell phones or social media. But still, there are many good lessons to learn that are timeless classics. This quick read teaches why focus groups, value-price positioning, discount pricing, and being the best can fail; the vital need to focus on one message; the one emotion that most influences why your prospects will buy from you. Three stars out of five.