Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder
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Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




An Example Letter for Insurance Appeals


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.

 

Sincerely,

 

 

 

 

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.”