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

 




Insurance Claims


Insurance Claims

How to Appeal an Insurance Denial or
Request Out-of-Network Treatment
(pdf)

Massachusetts Residents Get Free Health Insurance

You have health insurance and you expect your benefits to cover the cost of treatment for a vascular birthmark. Your insurance or HMO denies coverage. It's not an unusual situation. Many insurance companies still classify the treatment of vascular birthmarks as cosmetic surgery. The reason: for decades, the medical books instructed physicians to "leave them alone, they will go away." Therefore, if the books say they will go away, the insurance company is going to consider treatment "elective." Unfortunately, it will take a great deal of time and effort to change this philosophy. In the meantime, we want to help you plan a strategy for appealing an insurance denial. The following information has been excerpted from the Birthmarks book but it should be enough information to get you started on your appeal.

* Because there are so few specialists who treat vascular birthmarks, you may have to go out of network. If that's the case, you'll need to get a doctor in your network who will support your cause. Supply your network doctor with articles, journals, internet information and even a copy of the Birthmarks book as support for your cause. You will need his/her referral to the "out of network" specialist in order to convince the insurance company that the treatment is necessary and not obtainable in your network.

* Keep a detailed journal of the lesion(s) from birth to present. Document if the lesion bleeds, causes pain, problems, swelling, emergency room visits, or doctor visits for concern. If the lesion is on the lip, indicate if it affects eating or drinking or speaking.

* Seek other opinions that will support "out of network" treatment. Find a doctor who will do a phone consult with the specialist. Send him/her photos and or documention with and MRI, etc.

* If you are denied coverage verbally or in writing, request a detailed written explanation of the denial (this is very important for your cause/case). Ask your support doctor to request an "expedited appeal." Call your carrier personally and ask the Medical Case Management Department for the specific steps to appeal the decision. Most carriers have 5 to 6 appeal levels. You don't need a lawyer, most companies allow you to write the appeal letter yourself.

* Notify the Benefits Department of your employer about the denial. The insurance company may not be following the specific guidelines for your plan. A claims adjuster can make an error or faulty decision.

* Write or call your claims adjuster personally.

* File an appeal with your state's Commissioner of Insurance Department.

* When writing to your Commissioner of Insurance, use key words and phrases like "the quality of my child's life has been adversely affected by this lesion" or if the lesion is near an eye, ear or mouth you can indicate that it MAY cause a problem with seeing, hearing, eating or speaking. Also, list frequency of any bleeding, ulcerating, crying episodes.

* Indicate that the out of network specialist can likely treat the child in fewer visits than a doctor who does not know how to treat the child.

* Ask the surgeon who agrees to do your child's surgery if she/he will accept the network fee for such treatment.