Mission: to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.
The Patient Advocate Foundation (hat tip: Myeloma for Dummies) is an organization that provides FREE service to patients and their families who may be experiencing some difficulties in their healthcare journey. I have no personal experience, and if anyone does, it would be great if you would share. It’s nice to know though that there may be some additional assistance out there when you run into difficulty.
They have a “success story” testimonial that just happens to be, you guessed it, a 13 year MM survivor! link here
Their site is not the easiest to negotiate, but pound around and make some notes if you find something helpful you might want to revisit. Here is the link to their “blood cancer resources” page. Given that their site is a bit arcane, I would call, after I familiarized myself with the FAQ Section which is under the Get Help tab.
I hope you don’t need them and that you have somewhat smooth sailing on these paperwork issues with insurance, pharmacies, employers, Social Security Disability, hospitals and doctor’s offices. If you do run into trouble and you have exhausted all the usual work-arounds, it might be worth giving them a call and see if they can help get things moving in the right direction again.
Don’t give up. Remember that while sometimes it really is the RULE, sometimes, it is indeed the person(s) who may not have the ins and outs of the rules as well as another. So be kind in your approach. Let them know you are frustrated, but don’t ACT FRUSTRATED. Just be clear, and calm in explaining your situation. People’s natural inclination is to help. If you get someone who exhibits an unwillingness to do that, call back and talk to someone else. If you are employed, go through your benefits coordinator if you have exhausted the usual insurance routes. They won’t like hearing you are not be taken care of and have all the power to move the company’s insurance to another provider. Sometimes they can get things moving again too. And finally, there are Social Workers at the hospital/cancer centers whose job it is to be helpful, direct you, connect you, and sometimes step in.
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” – Mary Anne Radmacher
