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.

 

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.

 

Rafael Ortiz, MD, Neuro-endovascular Surgeon
Ask Dr. Ortiz your questions about vascular tumors of the head and neck region, cerebral and spinal arteriovenous malformations, treatment of craniofacial vascular lesions (venous, lymphatic, AVMs, hemangiomas) in adults and children.

 

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

 




Position statement from various birthmark support groups


December 10, 2009
Dear Friends:

 

As organizations that work to assist families affected by Vascular Anomalies including tumors, malformations, lesions commonly referred to as birthmarks and related syndromes we have come together to issue a joint statement on Health Care Reform.

 

Soon the United States Senate will vote on the “Patient Protection and Affordable Care Act.” This bill is more commonly known as the Health Care Reform Bill. Many families affected by a hemangioma or malformation have expressed concern as to how this proposed bill will affect you. We are concerned as well. We have identified areas of this legislation that, if approved, will have a negative impact on the treatment of vascular birthmarks/anomalies.

 

As patient advocacy and education organizations; our chief concern is that the newly proposed Health Care Plan seeks to impose a surcharge on all surgeries and medical procedures that are deemed to be “cosmetic”. This bill additionally proposes to allow insurance companies to make this determination. Our experience has shown that many treatments, be they surgical or laser, for hemangiomas, or port wine stains, are denied by insurance companies because they insurance company classifies the treatment as “cosmetic,” elective,” or “not medically necessary.”

 

Our organizations have worked tirelessly helping families appeal the denial of benefits and have won most of these appeals. Insurance companies now recognize surgical, laser and medical management of vascular anomalies as restorative and reconstructive but this bill will undo the good that has been done to get these treatments approved.

 

Every licensed health insurance company has a published appeal process for denial of benefits for consumers. The process allows for a review by physicians working in the field of medicine for which the patient is seeking care. Patients currently have a process by which they can claim medical necessity for medical care that has been denied. While this process is lengthy and time consuming it often leads to a reversal of the denial of benefits and allows for treatment.

 

The proposed health care legislation, to our knowledge, does not allow for an appeal process. Denial of benefits will be based on procedure codes assigned to various treatments and will make it impossible for families to appeal. This will force families to abandon treatment or have to pay cash. Both of these options are not acceptable to us.

 

Additionally the current legislation seeks to add a surcharge or a tax for procedures determined to be cosmetic or elective and possibly those deemed as not medically necessary. This alone is unacceptable to us but it may even mean that if a family decides to pay for a restorative or reconstructive procedure that has been denied coverage, there will be a penalty or tax assessed to the procedure because it deemed cosmetic or elective.

 

There is one solution that would resolve the issue of denial of benefits for the treatment of hemangioma and vascular malformations. If congress includes a provision that declares that the treatment vascular anomalies and other craniofacial anomalies as a medical necessity; then treatment could not be denied and penalties would not be assessed to procedures. This provision would benefit families affected by the spectrum of vascular anomalies including hemangiomas, port wine stains, and other malformations as well as craniofacial anomalies like cleft lip/palate.

 

Other concerns have been voiced by health care advocates and patient rights organizations. Answers to these concerns have yet to be resolved.

 

  • Out of Network Benefits: As the plan is written there is no allowance for out of network benefits. In an effort to cut costs patients will be assigned regional treatment zones. It will be nearly impossible to get approval to travel out of these zones for treatment. There are several states that do not have surgeons that treat hemangioma and vascular anomalies- how these patients will receive treatment is unknown at this time.
  • Increase Cost to State Government: Many Governors have expressed concern that the health plan will hurt the already troubled state budgets. If cost is passed on to individual states rationing and limitations on access to doctors and care will occur. Hemangiomas grow at a rapid rate in the early months of development- waiting for treatment will lead to avoidable complications.
  • Government Guidelines for treatment: Just last week we all saw how the government can issue guidelines to care that could be used to ration access to procedures. The authors of the guidelines for mammography admitted to a Senate subcommittee that their new guidelines may have been “poorly worded”. There is concern that the government will continue to issue “poorly worded” or reports that are based on bias data that will directly affect if patients should receive diagnostic testing. PHACE Syndrome patients, Sturge Webber Patients and other patients with complicated vascular anomalies required MRI and other diagnostic screening. Rationing of diagnostic testing has a direct impact on outcome.

 

Due to these concerns our organizations can not support the proposed health care legislation. We are asking the families that we serve to consider these concerns and then write or call your senators asking them for answers to these important concerns.

 

Karen Ball Linda Rozelle-Shannon, PhD Executive Director President/Founder
Sturge Webber Foundation Vascular Birthmark Foundation
kball@sturge-weber.org hvbf@aol.com

 

 

Karla Hall Corinne Barinaga
Executive Director Director of Family Services
National Organization of
Vascular Anomalies

Vascular Birthmark Foundation
khall@mail.novanews.org vbfadvocate@live.com

 

 

Kim Cody Mark Metcalf
PHACE Syndrome Community President/Founder
Patient Advocate KT Foundation
NOVA Family Advocate
ktfoundation@earthlink.net
support@mail.novanews.org