The Social Butterfly

Okay, so the other day I had a bit of a 'tude over an article that was brought to my attention through a support group that I participate in. The article was offensive to us because of the writers saying that medical coverage for PWS was "rediculous" (read other blog for info if you don't know what I am talking about). Anyway, a number of people from our community of those who have this condition and related syndromes basically let them have it....and told them some personal stories and how hurt we were about what they said. Well, the two guys who wrote the articles emailed each of us personally and apologized and published follow-up apologies for what they caused. I am thankful that they did and I personally recieved a few emails of apologies and grattiude for the work that I do for our families affected by these conditions They have also added my website to their links of where to find information at the end of the follow-up article which was exciting for me to see (BIC Foundation!!!).  Here is the follow-up:

Treating PWS with dignity and responsibility

 John Graham and I recently co-authored an opinion piece referencing port-wine stain (PWS) birthmarks.  We received feedback from parents and support groups for PWS which made us aware that we appeared to be mean-spirited and uncaring in our choice of words. This was not our intent whatsoever. We regret the error and apologize for any hurt it may have caused. We recognize the struggles of families and children who have to live with this anomaly on a daily basis.  In fact, one of my sons has a mild form of PWS (hemangioma) on his arm. We are very pleased that there exists a network of informed, supportive and proactive parents who provide information on this issue.

Corrine Barinaga very kindly wrote us about PWS in an email. Here are some excerpts:

"For the past 5 plus years I have helped thousands of families find adequate help and support from their primary care physicians and insurance companies.  After my son was born with an extensive hemangioma (benign vascular tumor) that covered the entire right side of his face, ear, neck, scalp, back of his neck and eye I felt compelled to help those that followed me.  My son was at risk medically for heart failure, brain abnormalities, eye malformations, etc.  Initially his primary care physician gave me the typical… "It will go away in one year."

Thankfully we followed our instincts and found a specialist that knew the risks of hemangiomas.  Because of prompt intervention followed by multiple laser treatments, my son has no medical concerns and the hemangionas  is for the most part gone.  Had he not had intervention he would have faced major reconstructive surgery with large scars or significant disfigurement if left alone, not to mention the medical risks.

I saw a grave misunderstanding by the general medical community, general public and insurance companies in regards to the field of vascular "birthmarks" (a.k.a. vascular tumors and malformations or anomalies), so my mission is to provide support, direct people to appropriate physicians and provide information and educational tools.

Very few people know the drastic side effects and medical concerns.  We've had babies die while waiting for approval to see a specialist.  It is a lot more than a birthmark we are dealing with.  While I appreciate that you agreed there should have been a distinguishing statement between medically necessary treatments of "birthmarks" vs. cosmetic treatment, it isn't as easy as being able to look at a lesion and say "this is not serious" or "this one is serious."  Only a trained specialist (with tools such as MRI, biopsy, experience, etc.) can make this call after evaluating the patient.  There are syndromes and health concerns that relate to these vascular malformations/tumors that aren't often visible initially.

The risk is that when information is out there that birthmarks are "no big deal, only cosmetic" people don't receive needed evaluation to determine if their case requires intervention or if intervention would improve the final results.

There is an enormous spectrum of cases and types of vascular tumors and malformations.  One of the largest problems we face is misdiagnosis.  Misdiagnosis is serious as it leads to improper treatment and expectations for the patient.  Another major issue we find is the misinformation and attitudes communicated to patients about birthmarks from the medical community, insurance companies and even in the media.  I have seen cases that may not appear serious, but ended up requiring emergency intervention.  The spectrum includes many cases with underlying medical issues not caught in time, all the way down to the very minor inconspicuous spot.  The problem is when the attitude is out there that this is a cosmetic issue; people don't seek proper information SPECIFIC to their case….

When we see statements made in the media that are not accurate or support benign neglect, it undermines the progress we've made in the field.  People need to know that all vascular lesions need to be evaluated.  The majority of cases don't require further examination, but we can't put a blanket statement out there that this is cosmetic….

You are putting people at risk by misleading the patient, parent, sometimes even the primary care physicians and insurance companies to believe birthmarks are not medical concerns. You can't make the call on medical necessity until after a patient is evaluated by a specialist.  PWS or Capillary Malformations as referred to in the article have major underlying medical concerns. I am sure you've recently been informed of these risks as a result of this statement.

I also take issue with the word cosmetic.  The comment I've heard frequently, "Cosmetic surgery is for nose jobs, breast enhancements, etc. where treating a vascular lesion is reconstructive surgery, not cosmetic."  You are dealing with something that is abnormal and doesn't belong.  It wasn't very many years ago that a cleft lip/palate was considered cosmetic surgery. It is accepted now as reconstructive to fix a birth defect."

I want to thank the number of parents who wrote me and shared with me a number of online resources and, more importantly, shared their personal stories.

For more information about PWS and what you can do to become engaged, please go to the "Because I Care" website at www.bic-foundation.org. Additional information is available at www.birthmark.org and www.birthmarks.com .

October 15, 2008

Michael Ciamarra is vice president of the Alabama Policy Institute and can reached at michaelc@alabamapolicy.org .