CARES Act

I was alerted to the introduction of the Children’s Access to Reconstructive Evaluation and Surgery Act -- or CARES Act -- via this American Society of Plastic Surgeons press release. The legislation was introduced by Reps. Carolyn McCarthy (D-NY) and Patrick Tiberi (R-OH). Below is the ASPS release in its entirety. I've bolded the highlights.

ASPS Applauds Introduction of Legislation to Increase Access to Reconstructive Surgery for Children
For Immediate Release: March 23, 2007

ARLINGTON HEIGHTS, Ill.—The American Society of Plastic Surgeons (ASPS) today announced its support of the Children’s Access to Reconstructive Evaluation and Surgery Act—or CARES Act. This bi-partisan legislation was introduced today in the House of Representatives by Reps. Carolyn McCarthy (D-NY) and Patrick Tiberi (R-OH).

In response to an increasing number of insurance companies denying coverage for reconstructive procedures to correct deformities in children, the CARES Act would require insurance companies to provide coverage for the treatment of a child’s congenital or developmental deformity or disorder due to trauma, infection, tumor, or disease. Seven years ago, President George W. Bush signed comparable legislation into law while Governor of Texas.

“The ASPS and Coalition for Coverage of Children’s Deformities believe that a statutory requirement for insurance coverage of children’s deformities is vital to correct the growing problem of insurance companies denying care on the grounds that the care provided is cosmetic in nature,” said Roxanne Guy, MD, ASPS president. “The American Medical Association defines reconstructive surgery as being performed on abnormal structures of the body caused by congenital defects, developmental abnormalities, trauma, infection, tumors or disease. Reconstructive surgery is generally performed to improve function and approximate a normal appearance. The CARES Act identifies the distinction between cosmetic and reconstructive surgery.”

Lauren Mandel, now a teenager, was denied such coverage when she was a little girl. Insurance covered the life threatening procedures for her arterial venus malformation (tumors made of blood vessels) but denied surgery to fix her jaw and teeth, stating it was considered a cosmetic procedure. Lauren finally had the surgery, which was paid for by her parents.

“My daughter deserves that chance as does every child in this country,” said Bernadette LaPoppa, Lauren’s mother. “No family should have to face the obstacles we have faced or experience financial hardship to receive necessary care from the appropriate medical specialist.”

According to the March of Dimes, 3 percent of babies born annually (120,000) suffer from birth defects. A birth defect is an abnormality of structure, function, or body metabolism present at birth that results in physical or mental disabilities or is fatal. Of the 120,000 children born annually with birth defects, approximately 40,000 require reconstructive surgery.

Examples of these deformities include cleft lip, cleft palate, skin lesions, vascular anomalies, malformations of the ear, hand, or foot, and other more profound craniofacial deformities. Although surgeons are able to correct many of these problems, an increasing number of insurance companies are denying access to care by labeling the procedures "cosmetic" or "non-functional" in nature. A survey of ASPS members revealed that nearly 54 percent of respondents indicated they had pediatric patients who have been totally denied insurance coverage, or had experienced significant and deleterious obstacles in obtaining approval for coverage of surgical procedures.

“The CARES Act is common sense legislation that will improve the current delivery system and restore patients’ and families’ trust and confidence in their health plans. Too many American families are being denied access to health care that would prevent long term physical and psychological injuries. The procedures used to treat these children are, by definition, reconstructive, and should be covered by insurance,” said Dr. Guy. “Speaking on behalf of the ASPS membership, we thank the sponsors of this proposed legislation and appreciate their support. As plastic surgeons, we recognize this disparity on a personal level with our young reconstructive patients and their families.”

Shriners sponsors Maryland patient screening

From the Frederick News-Post:

"Volunteering their time to help children with orthopedic or burn problems, 19 employees of the Mid-Maryland Musculoskeletal Institute offered a patient screening clinic Saturday.

Members of the Ali Ghan Shrine in Cumberland, a branch of the Shriners of North America, used the facility on Thomas Johnson Court for five hours to give parents with children needing medical assistance an opportunity to apply for treatment at no cost. No appointments were needed.

Children were accepted with conditions including burns; scoliosis; clubfeet, a common birth defect; leg length discrepancies; limb deficiencies; orthopedic problems associated with cerebral palsy; congenital hip, neuromuscular, hand and back problems; sports injuries; and cleft palette."

6-Year-Old Undergoes Toe to Hand Transfer

From the Baltimore Examiner:

Hector Salas endured nine hours of surgery Tuesday and emerged sporting a new ring finger.

The 6-year-old underwent a procedure that removed a toe from his foot and added a finger to one of his hands, which only had a thumb and “nubbins.”

Complications usually surface within the first five days following surgery, and the first 24 hours hold the most danger, said Dr. James Higgins, a surgeon who performed the operation at Union Memorial Hospital’s Curtis National Hand Center.

Helping Hands Foundation Aids Romanian Boy

The Capitol (Annapolis, Maryland) had an article recently about Paul Lacatos, a 17-month old Romanian boy who suffers from complex syndactyly along with other issues in his legs.

The Helping Hands Foundation helped bring Paul to Annapolis from Romania. The foundation has covered travel and medical costs along with finding a host family for Paul and his mother.

The article itself is comprehensive and thoughtful. It touches on almost every aspect of the story from potential environmental causes of the condition to the emotional bond that Paul's host family developed for him. Most importantly, it demonstrates how the generosity of these individuals has resulted in a tangible benefit for Paul.

New Diagnosis for Poland's Syndrome

On Wednesday we took our six-month-old daughter to see Dr. Steven Moran at Shriners Hospital in Minneapolis. He quickly diagnosed her with Poland's Syndrome. According to this overview by the National Organization for Rare Disorders:

Poland Syndrome is a rare condition that is evident at birth (congenital). Associated features may be extremely variable from case to case. However, it is classically characterized by absence (aplasia) of chest wall muscles on one side of the body (unilateral) and abnormally short, webbed fingers (symbrachydactyly) of the hand on the same side (ipsilateral).

In those with the condition, there is typically unilateral absence of the pectoralis minor and the sternal or breastbone portion of the pectoralis major. The pectoralis minor is a thin, triangular muscle of the upper chest wall; the pectoralis major is a large, fanlike muscle that covers most of the upper, front part of the chest.

Affected individuals may have variable associated features, such as underdevelopment or absence of one nipple (including the darkened area around the nipple [areola]) and/or patchy absence of hair under the arm (axilla). In females, there may be underdevelopment or absence (aplasia) of one breast and underlying (subcutaneous) tissues. In some cases, associated skeletal abnormalities may also be present, such as underdevelopment or absence of upper ribs; elevation of the shoulder blade (Sprengel deformity); and/or shortening of the arm, with underdevelopment of the forearm bones (i.e., ulna and radius).

Our daughter appears to have the classic symptoms of the disorder minus any skeletal abnormalities in her ribs and shoulder blade. I based this last comment on an x-ray she had at three-months-old that didn't appear to show anything abnormal. It is certain she's missing at least one of her pectoral muscles.

There is likely to be surgical procedures down the road that are both functional and cosmetic in nature. I'll cover more on the condition, treatment options, and related topics in subsequent posts.

As for our daughter's hand, Dr. Moran was as optimistic about her function and prognosis as the other specialists, orthapedists, hand surgeons and pediatricians we've met with.

Cleveland Clinic

I came across this overview from the Cleveland Clinic that includes a good straight-forward explanation of the most common congenital limb conditions, treatment options, and information for relevant staff at the Clinic. I dug around in the Cleveland Clinic site to try and find a page dedicated to the Clinic's approach and resources for treating limb differences. The closest I could come up with is the Pediatric Plastic Surgery Section and the Orthopedic Surgery Section.

I haven't read or heard anecdotally about the Clinic's reputation for pediatric plastic or orthopedic surgery, surgical rehabilitation or the specific experience its specialists have with limb differences. While it's always risky to make assumptions about an institutions ability to diagnose and treat rare conditions, given the Clinic's national reputation it's probably fair to assume that if your seeking initial information and treatment options you'll be well served. This is especially true if you need to seek treatment in the Cleveland area and don't have access to other treatment centers in the Midwest or East Coast.

Back to Curtis

Last week we took our daughter back to see Dr. Thomas Graham at Curtis National Hand Center. This was our first real appointment at Curtis. Our first visit was during the monthly clinic the Center offers for those seeking initial consultations for children with congenital hand differences.

As I previously detailed, our daughter has a small thumb and a pinky finger on her right hand. She is missing her index, middle and ring finger. The growth of the hand so far has allowed her to form a very functional pincher grip.

Overall the discussion was as positive as we could've hoped for. Dr. Graham was as optimistic about our daughter's hand function as he and the others physicians were during her initial clinic visit. It was Dr. Graham who first diagnosed her condition as "transverse failure to form." Meaning it is not connected to any other conditions and is very unlikely to have been passed on genetically. In his words, it was a "lighting strike."

The bottom-line from this appointment is that there is really nothing more to do in the short-term other than continue watching our daughter develop. We are seeing one more specialist at Shriners later this month. Provided his guidance doesn't dramatically differ from the 1/2 dozen others doctors we've seen, my wife and I have agreed that we've heard enough to be confident that our daughter is lucky to have the level of function she has and that there are no procedures we need to plan for in the near future.