Republican presidential candidate Rick Santorum with his wife Karen. (Matt Rourke - AP) GOP presidential candidate Rick Santorum’s youngest daughter, Isabella, is recovering at Children’s Hospital of Philadelphia after a bout of pneumonia forced her family to rush her to the hospital this weekend and her father to temporarily abandon the campaign trail.

Known as “Bella,” the 3-year-old was born with the genetic disorder Trisomy 18, which is often fatal for infants and leads to physical deformities and cognitive deficiencies.

In a strange coincidence, Bella is being treated at the same hospital that earlier this month made the news for its treatment toward another 3-year-old girl, Amelia (Mia) Rivera, who has the genetic disorder Wolf-Hirschhorn syndrome.

Rivera’s family said Children’s Hospital of Philadelphia officials told them their daughter was not eligible for a life-saving kidney transplant because she was “mentally retarded.” (I wrote about her story in a previous post here.)

Hospital officials will not comment directly on the case, but have said they do not have a policy of denying transplants to children with developmental delays. (Studies have shown such policies are a common, if unspoken and unethical, practice at many transplant centers.)

Hospital officials and the transplant team have also agreed to meet with Mia’s family.

Besides their conditions, ages and the venue in which they are being treated, the little girls share something else: Their stories have touched a public nerve.

In Bella’s case, her story was already well-known. Santorum has said that after she was born, doctors told him and his wife that they should let the girl die because she would never live a normal life. Controversially, he has linked that experience to his criticism of the Democrat-backed healthcare reform.

Santorum critics point out that healthcare reform expands coverage and will, in fact, help families in similar situations.

For Mia, her family’s fight to make her eligible for a transplant has brought her fame. Her plight has prompted tens of thousands to protest both her treatment and also the broader issue of discrimination in medical care.

Politics aside, if that’s possible, what’s most amazing about both these stories and all their similarities is that these two little girls, Bella and Mia, who have both been deemed marginal throughout their lives, are now part of the public discourse.

They are reminding us that children come in all shapes, sizes and forms. That even soft voices have merit. That children cannot be ranked for worth. Marginal? Not them.


The only problem with this beautiful essay is that under health care reform there are people who think that the plight of such children cause, well, a misallocation of resources.  In otherwords, why waste money on screening these kids, especially when they drive up health care costs.

Such is the attitude of Jean Slutsky, who is a senior offical at the Agency for Healthcare Quality and Research (AHRQ) and is on the PCORI methodology committee, which will determine how PCORI should conduct CER and what it should measure.  Slutksy, like other methodology committee members believe CER should be used to control health care costs.   (I will post on these other members in the future.)  Here's Slutsky opining on kids like Bella Santorum:

"Compelling stories of children who died from very rare metabolic disorders that might have been detected with newer, more expensive equipment have created powerful momentum for expanded screening of newborns. But in an era of constrained budgets, state policymakers need to weigh the benefits and costs of new screening programs against those of other equally important programs. Nonetheless, it remains politically risky to frame a health policy decision as being based primarily on cost or cost-effectiveness."

And taxpayers pay for her salary?  Slutsky should resign from PCORI and AHRQ.