Dear United Healthcare and the AAP,

Published by Jeff | Filed under Causes

Thanks for looking out for the best interest of all the children.  AAP (American Academy of Pediatrics), your new policy changes for the 2009-2010 RSV Season have left so many gaps in coverage it is unbelievable.  United Healthcare, labeling Synagis an experimental drug and not allowing coverage blows my mind.  Especially since the drug is approved by the FDA for the use of preventing RSV.

We have followed every recommendation to help reduce the risk of Max and Wes getting RSV.  We have asked family and friends take all the necessary steps as well (whether they follow our wishes when we aren’t there is up in the air, but guidelines were set).

According to the AAP:

There are important steps you can take to prevent exposure to RSV and other viruses, especially in the first few months of your child’s life.  These precautions include:

• Make sure everyone washes their hands before touching your baby.
• Keep your baby away from anyone who has a cold, fever, or runny nose.
• Keep your baby away from crowded areas like shopping malls.
• Keep your baby away from tobacco smoke. Parents should not expose their infants and young children to secondhand tobacco smoke, which increases the risk of and complications from severe viral respiratory infections.
• For high-risk infants, participation in child care should be restricted during RSV season whenever possible.
• All high-risk infants and their contacts should be immunized against influenza beginning at 6 months of age.

Hmmm, let me think.  Check, check, check, check, check, aaaaand check.  We have followed them all.

According to page 4 of the AAP RSV Guidelines PDF, found here, the boys should have been covered in this section:

Infants born before 32 weeks’ gestation (31 weeks 6 days):  Infants in this category may benefit from RSV prophylaxis even if they do not have CLD.  For these infants, major risk factors to consider include gestational age and chronologic age at the start of the RSV season.  Infants born at 28 weeks’ gestation or earlier may benefit from prophylaxis during the RSV season whenever that occurs during the first 12 months of life.  Infants born at 29 to 32 weeks’ gestation (31 weeks 6 days) may benefit most from prophylaxis up to 6 months of age.  However, once an infant qualifies for initiation of prophylaxis at the start of the RSV season, administration should continue throughout the season and not stop when the infant reaches either 6 or 12 months of age.  A maximum of 5 monthly doses are recommended for infants in this category (AI).

However, according to Table 3 in the same PDF on page 6, they should not be covered.  The explanation in the table states that children born between Nov 1 and Mar 31 of the previous RSV season should not be treated as they will be 6 months or older at the start of the next RSV season.  Yet the section referenced on page 4 states that factors to consider are “gestational age” and “chronological age” at the start of RSV Season.  And that infants born between 29 and 32 weeks “may benefit the most from prophylaxis” (Synagis).  The guidelines leave a major loophole that allows insurance companies to deny coverage in that they get to decide between gestational and chronological age.  Because the boys were chronologically 6 months they were denied.  If they would have gone off of gestational age they would have been covered.

Does anyone else see the problem here???

Why does this all matter now?  Well, as you know from yesterday’s post, our boys have tested positive for RSV, albeit a minor case.  As of yesterday, the symptoms are restricted to their nasal cavities and drainage into their throats, leaving them with abnormally running noses, sore, hoarse throats, and a nasty cough.  If we\they are lucky, this is as bad as it will get.  We won’t discuss what will happen if it gets worse (although my wife was up most of the night having nightmares about this).  Yesterday’s pediatrician appointment left us with a lot of hope.  Max and Wes did not have ear infections or a wheezing sound in their lungs – their oxygen levels looked great, they still have appetites, they are not dehydrated, etc.  If not for the major cold symptoms, it was just another routine appointment for two happy, healthy little boys.

We both realize how lucky we are, and for many reasons.  We are lucky that we were able to go through with in-vitro fertilization and have a successful outcome.  We are lucky that United Healthcare covered what they have so far (in regards to both Kerry’s surgeries and the boys’ NICU stay).  We are lucky to have such healthy babies.  We are lucky to have the support of so many people.

But when you have done everything right, followed every recommendation and guideline, and your babies still end up with RSV, you feel like a failure.  We don’t deserve to feel that way.  Nobody does.  We did all the right things and someone else dropped the ball.

All because someone wanted to pad the bottom line and deny the coverage.

Thoughts?

Jeff