The Vascular Birthmarks Foundation (VBF) is the leading charity in the world for networking individuals with vascular birthmarks, anomalies, and related syndromes (VBARS) into proper medical treatment.
The VBF currently monitors over 80,000 individuals / families, worldwide, who are affected by VBARS, via various social media outlets. Nearly 90% of these birthmarks are comprised of the port wine stain (PWS) birthmark; also known as a capillary malformation (affecting 0.3-0.5% of infants) and / or the infantile haemangioma (IH) (affecting 1-4% of infants).
For the PWS, the gold standard treatment is the pulse dye laser (PDL). For the IH, the PDL can be used for early emerging IH lesions or those that never develop any depth over 1-2mm (which would be beyond the reach of the PDL). The gold standard for IH outside of the laser parameters is the beta blocker. A topical version, timolol, in combination with the PDL is often effective in treating early emerging lesions.
Patient images demonstrate the importance of early access; before and after treatment
with Candela PDL by VBF European and Italy Director, Giacomo Colletti of Milan.
One of the chief complaints by the affected families is that they lack access to the proper treatment team. The second complaint is that insurance providers consistently deny coverage of these lesions as they are inaccurately deemed cosmetic or elective. This problem is more rampant in the US than it is in other countries which have national health plans.
VBF has taken on the challenge of addressing these two chief complaints. In combination with leading laser treatment experts, and Candela Medical, the US-based global medical PDL device company, VBF has networked over 700 individuals into free laser treatment using Candela’s Vbeam® 595nm advanced PDL device. At a wavelength of 595nm, the Vbeam laser provides the optimal blend of depth penetration and haemoglobin absorption for successful results. In addition, VBF has helped to establish numerous treatment centres around the world, as well as many annual free laser clinics. Currently, VBF along with the American Society for Laser Medicine and Surgery, the world’s largest scientific organisation dedicated to promoting research, education and high standards of clinical care in the field of medical lasers, are working together to develop uniform guidelines for using the laser to treat cutaneous vascular lesions. Our projected completion date for the project is December 2023.
Each year VBF hosts an annual VBF Super Clinic / Conference where affected families are able to receive free services such as: laser, dental, ultrasound, and psychotherapy. Families also receive free lodging. At these annual events, teams of medical experts meet with each affected family to provide an informal diagnosis and treatment plan. The families are then networked to the closest expert for continuity of care. The average attendance ranges from 225-285 with a combination of families and physicians as well as VBF members.
In addition to the annual event, VBF hosts numerous free laser clinics throughout the world. Twice a year the free laser clinic is held in Milan, Italy in order to help families in Europe who cannot access care. In the US, there are free laser clinics in New York, Florida, California, Texas and Massachusetts.
In 2021 VBF began to work with leading lobbyists in the USA in order to garner support for legislation that will mandate that all insurance providers cover the treatment of VBARS. VBF continues to work on this project to ensure that all affected families have fair and affordable access to treatment. If any treatment specialists are interested in joining the VBF medical missions programme dedicated to providing free access to treatment, contact Dr Linda on VBFpresident@gmail.com
References
1. Goelz R, Poets CF. Incidence and treatment of infantile haemangioma in preterm infants. Archives of Disease in Childhood – Fetal and Neonatal Edition 2015;100:F85-F91.
2. Geronemus R. Port wine stains in infants: Optimizing outcomes with early treatment. Contemporary Pediatrics 2019
https://www.contemporarypediatrics.com/
view/port-wine-stains-infants-optimizing
-outcomes-early-treatment
[accessed 1 September 2022].
COMMENTS ARE WELCOME
