Here are some suggestions from Maureen Schilling about dealing with insurance companies

I understand the frustration out there with Insurance companies, It took me 5 years of vigorous campaigning to get my insurance company to listen to me and cover my treatment.

Here are some suggestions:

  1. BE PERSISTENT - the squeaky wheel gets the oil….I always made several calls to my insurance 800 number, amazingly if I asked the same thing of four different service reps I got four different answers. Find someone you trust and that is helpful and ask for that one person.
  2. Document Everything: Take names and dates, every call you make. Insurance agents have selective amnesia about coverage.
  3. Put it in writing. Follow up phone calls with letters. Overstate the obvious and make quotes when available. CC as many doctors, company executives that you possibly can - this lets the insurance company know you mean business.
  4. Educate your Primary Care Physician: I had a draft of a letter asking for coverage that I gave to my primary care physician so that it made it easier for him to write the insurance company. I gave him issues of the NLN newsletter and copies of articles on LE. When it comes to LE, you probably know more than most primary care doctors do but they are to embarrassed to admit that.
  5. Complain to your Human Resources Director: your company pays a lot of money for your policy, let the HR Director know you are getting the run around. See if they can put you in direct contact with the most senior person at the Insurance company. Show them your documentation of phone calls and letters to show how you have been working to get coverage.
  6. Change insurance companies: make sure the new carrier does not have the dreaded pre-existing condition clause. Investigate all your insurance options. You may have to pay a little more for better insurance but they may cover all your expenses. In some cases the cheaper HMO's offer more lenient LE coverage. Ask your LE specialist what insurance companies have been paying for treatments.
  7. Change Primary Care Doctors: find an advocate! If you are not getting the help or support you need to get coverage find another doctors. There are many great doctors who unfortunately are poor administrators. Find a doctor who will follow up with the insurance company for you, they all hate dealing with the bureaucracy but it is part of their job.
  8. Assume Nothing: Insurance companies think they have all the answers and will send you to who they consider to be the expert< often a Vascular Surgeon or Massage Therapist who does not deal or treat Lymphedema. Save yourself the time and call and find out what specific treatments they give LE patients: if they don't have the answer don't bother to go. MLD and CPT are specific treatments and massage therapists must be trained by the reputed schools. If the therapist just gives you a massage like you have a sports injury it is useless, in fact some massages can worsen the situation. As for Vascular Surgeons, for the most part LE has nothing to do with the vascular system and there is really no effective surgery, they usually don't have much to say on the subject.
  9. Try Again. Policies change, personnel changes, keep trying - they will NEVER call you and let you know it has changed in your favor!

NOTE: In preparing the letter for your Primary Care Physician (item #4), make sure this statement is included: "In my opinion, this treatment is appropriate and medically necessary"

If you still have problems convincing your insurance company, there are Cancer Patient Advocacy Groups which are pro bono. These wonderful lawyers do perform successfully and do guide you through.

Other things to include in your doctor's letter: