Insurance for Breast Cancer Patients – Lymphedema September 11 2014

Insurance for Breast Cancer Patients – Lymphedema

If you are a breast cancer survivor, be sure to cite the Women’s Health and Cancer Rights Act (WHCRA) of 1998 that was signed into law on October 21, 1998 by the 105th Congress. It is called Public Law #105-277. It appears as provision Title IX under Subtitle IV of a much larger Omnibus bill, HR 4328. It is, in fact, this bill that passed, which included the WHCRA, and mandates that all insurance companies provide coverage for “prostheses and physical complications of mastectomy including lymphedemas.”


I have compiled some healthcare insurance codes and healthcare conditions as relating to Lymphedema coverage. PLEASE NOTE, These conditions, codes, rulings etc. are different from state to state, insurance plan to insurance plan and are constantly changing. Proper documentation and codes may be crucial in getting treatment coverage. Please check with your insurer on the requirements and restrictions as it concerns lymphedema treatment. The codes and medical language should be an asset to your physician or therapist in putting together the request for treatment/therapy coverage or appealing a declination.

Conditions For Insurance Coverage (taken from various state medicare sources sources): This coverage policy was developed to provide medical necessity guidelines for complex decongestive physiotherapy for lymphedema.

1. There is a physician documented diagnosis of lymphedema: and the physician specifically orders CDP 2. The patient is symptomatic for lymphedema, with limitation of function related to self-care, mobility and/or safety. 3. The patient or patient caregiver has the ability to understand and comply with home care continuation of treatment regimen. 4. The services are being performed by a health care professional who has received specialized training in this form of treatment

ICD-9 diagnosis codes:

457.0 – Post-mastectomy Lymphedema Syndrome

457.1 – Other lymphedema

757.0 – Hereditary edema of the legs (congenital lymphedema)

CPT Codes:

97001 – Physical therapy evaluation

97002 – Physical therapy re-evaluation

97003 – Occupational therapy evaluation

97004 – Occupational therapy re-evaluation


Getting Insurance Coverage – Not Always Easy

Suggestions on Getting Insurance Coverage for Lymphedema Treatment 1. BE PERSISITANT! 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 HMOs 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 has not been trained specifically for Lymphedema. Save yourself the time and call and find out what specific treatments they give LE patients: if they ‘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 as they will NEVER call you and let you know it has changed in your favor!


Edema, Diagnostic Swelling Codes

729.81 Swelling of limb 782.2 Localized superficial swelling 457.0 Post-mastectomy lymphedema syndrome

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