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 Birthmarks Foundation





Karla Hall

Corinne Barinaga

Executive Director

Director of Family Services

National Organization of
Vascular Anomalies

Vascular Birthmarks Foundation





Kim Cody

Mark Metcalf

PHACE Syndrome Community


Patient Advocate

KT Foundation

NOVA Family Advocate