Insurance Coverage For Uncommon Diseases - Page 2
What can be done to change this state of affairs? First, be proactive. If you are diagnosed with a rare condition, obtain a copy of your policy and read it. Do not call your insurance company and ask what your coverage is for your condition-- you may be given the wrong answer. If that happens, you will be the one who-- literally-- pays for that mistake. (It happened to me, to the tune of $20,000.)
Make sure you understand how your policy covers your condition and what treatments they consider to be “medically necessary”. Do not take “no” for an answer the first time you hear it: if there is a treatment your doctor recommends and it is not covered, ask your doctor to write a letter of medical necessity.
Did you know that precertification is not a promise of coverage? Insurance companies can legally give you a precertification number and deny coverage after the fact. Really!
Always keep a written record of any communication between you and your insurance company.
If your treatment is denied, you can appeal the decision. Should that fail, contact an attorney. An excellent resource that will walk you through the appeals process can be found at Patient Advocate Foundation: http://bit.ly/bzy8VP
Finally, use your voice. Raising awareness about your disease is the best way to improve coverage for it as a whole. Remember the old saying “The squeaky wheel gets the grease”! If you do not advocate for yourself and speak out about your condition, if you do not fight back, why should the insurance companies change anything?