The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder

Dear Sir or Madame,

The purpose of this letter is to appeal the recent decision to deny 50% coverage for out-of-network care for our daughter’s compound hemangioma. The appeal is based on two accounts: first, the denial of the request under the assertion that the procedure is cosmetic and therefore not covered under our benefit plan, and second, the delinquent handling of our repeated requests for prior authorization for out-of-network coverage.

Pertaining to the first matter—denial of benefits for cosmetic surgery—the American Medical Association in 1989 adopted the following definition for cosmetic surgery: “surgery performed to reshape normal structures of the body in order to improve the patient’s appearance and self-esteem.” Similarly, the AMA Council on Medical Service defines cosmetic surgery as “that surgery which is done to revise or change the texture, configuration, or relationship with contiguous structures of any feature of the human body which would be considered by the average prudent observer to be within the broad range of ‘normal’ and acceptable variation for age and ethnic origin; and in addition, is performed for a condition which is judged by competent medical opinion to be without potential for jeopardy to physical or mental health.”

Hemangiomas are not normal structures. They are benign tumors composed of rapidly proliferating epithelial cells. The most common variety, the superficial (capillary or “strawberry”) hemangioma tend to be flat, and bright red in color. Less commonly, hemangiomas are composed of larger arterial tributaries, originate deeper in the tissue (deep hemangioma), and typically broadly protrude with a bluish or purplish appearance. Compound hemangiomas exhibit characteristics of these two forms simultaneously.

My daughter’s hemangioma is of the latter type, principally deep with a small superficial component. It initially appeared at 2 weeks of age as a purplish fleck about 2 mm in diameter. Over the ensuing months it proliferated to a mass that appeared approximately 2-3 cm in diameter. (At the time of excision it was found to be significantly larger that initially suspected [see attached letter from physician].) The AMA CMS statement “considered by the average prudent observer to be within the broad range of ‘normal’” certainly cannot be applied to her vascular malformation, as attested by the attached photographs. Even her 1 year old play-buddies would frequently point to her hemangioma, and try to touch it. The psychosocial distress of facial anomalies is well documented, as is the self-awareness of children by the age of 2 or 3 years, which is even more prominent in girls than boys. It is a stretch to suggest that a prominent facial hemangioma like my daughter’s cannot therefore be held “without potential for jeopardy … to mental health.” Further, on several occasions mild trauma to her hemangioma resulted in profound pain, swelling and bruising. Although we had been advised that this could happen, and took many painful bumps in stride, a recent incident raised sufficient alarm for us to immediately contact her pediatrician’s office (January 21st 2005). Following a slip and bump, her hemangioma expanded within minutes into a contusion protruding approximately an inch from her forehead with the circumference of a tennis ball, and the resulting bruising covered half of her forehead and temple. An attached photo, taken a full week later, still shows substantial discoloration from the bruising.

It is commonly taught that full spontaneous involution of hemangiomas is the rule, and hence, if the tumor poses no immediate threat to life one should “leave it alone.” Most hemangiomas do regress (lose their color), but less than 50% return as normal. In fact full resolution is the exception, rather than the rule for deep and compound hemangiomas. (see footnote 1.) In August 2004, when my daughter was 5 months of age, we forwarded a number of images of my daughter’s hemangioma separately to Dr. Milton Waner (Vascular and Birthmarks Institute of New York, Beth Israel Hospital) and Dr. John Reinisch (Dept. Head, Pediatric Plastic Surgery, Children’s Hospital Los Angeles), both of whom are world-renowned experts in the care and treatment of vascular birthmarks in children. Each emphasized that hemangiomas like my daughter’s would either require intervention now, or reconstructive surgical intervention at a later stage. According to the expert opinion of Dr. Reinisch, a pediatric plastic surgeon specializing for 25 years in the treatment of hemangiomas, laser treatment had an extremely poor prognosis for my daughter’s hemangioma due to its shallow depth of penetration (1-2 mm). At my daughter’s age, however, and given the location of her tumor, Dr. Reinisch advised that excision could be performed now with reconstructive results far superior to any reconstructive procedures undertaken at the conclusion of involution. This advice was consistent with the indications for early excision given by Milliken (Editorial, International Pediatrics, 14(3)):

Most comforting to us as parents, the procedure could be achieved very quickly (40 minutes) under mild sedation as an outpatient surgery without further procedures or trauma. The estimated total cost was $4475. Alternatives to treatment (some of which my daughter experienced already) included many weeks of painful intralesional steroid injections, or systemic steroids and laser treatment of the superficial component. I suspect that the total cost to you of these protracted courses of action would quickly surpass the 50% copay of the $4475 surgical outpatient procedure. The anguish that my daughter would have to endure with many weeks of repeated intralesional injections, or a growing awareness of her facial malformation cannot be so easily reduced to numbers.

In November of 2004, prompted by an immediate opening in Dr. Reinisch’s schedule, we initiated contact with your health services seeking authorization for out-of-network coverage (at the level of 50%) for the treatment of my daughter’s hemangioma. An unknown agent of yours advised us that because of our out-of-network coverage, no pre-authorization was required. We would have a $500 deductible and 50% copay. We elected not to undertake treatment at this time, but instead make an appointment for February 17th-18th 2005. Following the scheduling of this appointment, the following events occurred:

On December 3rd, we again requested authorization for 50% coverage of an out-of-network visit to Dr. Reinisch. Julie Rojas, surgical coordinator with Children’s Hospital Los Angeles (CHLA) faxed information on the CPT and diagnostic codes for the procedure to your health services (CPT 14060 and icd.9 code 228.00)
Several calls followed in the next two weeks with an unknown agent of your health services, advising us initially that no pre-authorization was required, since our plan allowed for 50% out-of-network elective coverage. I requested a letter affirming this.
January 18th 2005 after not receiving a letter either confirming or denying our coverage, I followed up with your health services, learning that my initial contact was no longer with the organization, and someone else was now handling the prior authorization. She advised that no CPT or icd9 code were on record, and for CHLA to re-fax them to you.
January 18th 2005 confirmed with Julie Rojas (CHLA) that CHLA had faxed required CPT and icd9 codes to your company
January 20th 2005 called you to confirm receipt of CPT and icd9 codes – none were on record
Over several phone calls, culminating in a three-way call with CHLA (again Julie Rojas) and your agent, we were advised that the visit to Dr. Reinisch on February 17th and outpatient procedure on the February 18th were covered at the level of 50% copay. Your agent cautioned me that you would pay only 50% of the standard billing amount for the surgical procedure in NM, which was almost certainly going to be lower than would be charged in CA. I told her I understood this. She also spoke for some time about a family member of hers with a hemangioma.
February 16th 2005 (day before our trip to California)

o 10 AM: received call from the surgical center in California confirming our details, and quote of costs. They advised that they had no record of our insurance.
o 10:30 AM: phoned your member services, spoke to an agent (extremely kind and helpful), who immediately phoned Julie Rojas (CHLA), and connected her with another agent in your Health Services.
o later: Your agent advised us that the other agent was no longer with the organization, and her actions on our case had not been documented or picked up after her departure. She apologized profusely that your organizations had “dropped the ball”.
o 5-6 PM: several messages left from your agent in Health Services, advising that our request for benefit had been denied
At this point, with fewer than 12 hours before our departure for California, there was little that we could do. We had nonrefundable airfares, lodging, and transportation, and were absolutely convinced that this was the most effective course of treatment for our daughter’s hemangioma. We had a preoperative visit with Dr. Reinisch on February 17th as planned, and the hemangioma was excised on the morning of the 18th.

In summary, you claim that the treatment of my daughter’s hemangioma is ‘not medically necessary’, and therefore constitutes a cosmetic procedure. It is clearly not cosmetic according to the American Medical Association and AMA-CMS guidelines, but instead a reconstructive procedure to rectify a painful and deforming childhood vascular abnormality. The term ‘medical necessity’ is conveniently subjective, but not included in the recently introduced “Treatment of Children’s Deformities Act,” supported by fifteen different American medical organizations, which mandates insurance coverage for treatments of deformities like cleft lip and hemangioma to restore normal appearance.

Repeated requests for authorization, and countless communications over the course of 4 months leading up to the procedure resulted in several verbal confirmations of benefit coverage, but not one verbal or written denial of benefits for the outpatient procedure until 30 minutes before close-of-business on the day prior to my daughter’s treatment. I can appreciate that representatives of your company may have acted inappropriately in verbally affirming coverage.

On these grounds, we request that you carefully reevaluate your decision to deny coverage for treatment of our daughter’s condition, and the manner in which it was handled. We are prepared to pursue this matter to a successful conclusion and if required contact the appropriate state insurance commission and state congress to determine that every possible means has been exhausted.


footnotes: “Excision in early childhood is indicated if: (1) resection is inevitable, for example if there is post-ulcerative scarring or a high probability of fibrofatty residuum; (2) if the scar would be the same in length and appearance if excision were to be done later; or (3) if the scar is easily concealed.”