Allow access to a lifesaving medication to all premature babies born before 36 weeks.

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Allow access to a lifesaving medication to all premature babies born before 36 weeks.

This petition had 6,444 supporters


Premature babies deserve a shot!

7/29/14 - IMPORTANT UPDATE - Jul 28, 2014 — We are quickly gaining ground with the petition! PreemieWorld has received word that the AAP has officially implemented further restrictions on Synagis use to prevent RSV. Advocacy groups are fighting back with well-placed ads in large media outlets. 


This petition was created by PreemieWorld without influence or financing from either "side" and has quickly gained ground with signatures and media attention. As such we are maintaining a strong focus on what's most important here - the babies and the families that we serve in this community. For us, this is not about the pharmaceutical company vs. pediatric association and all the politics and self-interests that incorporate each entity. 

It is about the babies! 

Your signature has helped us get this far. Please send the petition link out to your Facebook , Twitter, and Instagram friends today so we can continue to make it clear that we want guidelines that are based on proper research, are agreed upon by the patient families and providers and do not create drama.

 

 

6/13/14 - IMPORTANT UPDATE - we have learned that the AAP is planning to restrict these guidelines yet again, with plans to make it only available to babies born 28 weeks and younger.  My own daughter was born at 30 weeks and she got Synagis that first year.  It was the second year that she didn't get it and ended up sick and with a diagnosis of asthma.  Imagine if she didn't have it that first season.  This is a TRAVESTY. PLEASE GET THIS PETITION MOVING NOW SO WE CAN FIGHT THIS.  

I myself had a premature baby due to a set of circumstances that were out of my control. My daughter was born at 30 weeks and spent 38 days in the NICU and came home on medical equipment and was lucky to get Synagis that first season. The second season she did not qualify and we know now she ended up with RSV and shortly thereafter was diagnosed with asthma.

You may not realize it but in the United States alone 1 out of 12 babies are born premature. Almost half a million babies are born earlier than 37 weeks each year and are considered premature. Of those half a million babies, more than half are born before week 36. For babies born this early, there are increased health risks due to their decreased strength and immature immune systems. To ensure these babies survive, extraordinary measures are taken and substantial costs incurred, to provide them the best possible medical care in the NICU. Typically babies born before 35 weeks will remain in the hospital for weeks to months, until they grow strong enough to go home.

Once they are at home, the greatest health risk they face can lead to lifelong chronic problems like asthma, and too often re-hospitalization. This risk is Respiratory Syncytial Virus (RSV). Babies at greatest risk are often from low income households.

For several years, a drug called Palivizumab (Synagis) was regularly given to premature babies born before 35 weeks, to prevent them from getting RSV. During their first year of life, monthly shots were given during RSV season (October -March). This practice was considered the ‘standard of care’ approved by the Food and Drug Administration (FDA) and endorsed by the American Academy of Pediatrics’(AAP) practice guidelines.

By preventing RSV, at-risk infants are more likely to have good quality of life - free of chronic respiratory illness. By comparison, limited access to this medication can result in years marred by wheezing, asthma and expensive treatments –or in the most tragic cases, life cut short by the infection and related complications.

But in 2009, everything changed when the AAP backtracked on the guidelines. The professional organization for pediatricians, trusted to ensure the health of children in the US, decided to ignore the FDA approved medical label and deny Synagis dosing to specific groups of premature babies. Under these new guidelines, Synagis shots were dramatically decreased for babies born between 32 and 35 weeks. Not surprisingly, this change is all it took for insurance companies and Medicaid programs to stop paying for this medicine. This has caused parents to be “on lock-down” once they are home with their baby, fending for themselves with only hand-washing and hand-sanitizers in their germ warfare arsenal. All too often, these efforts fail and infants end up back the intensive care unit, once again fighting for their lives.

With the growing pressure to cut healthcare costs, there is worry that the AAP will, once again, change the guidelines to deny even more babies from getting Synagis. While this might save some money now, in the end, this will cause more lifelong harm to premature babies and cost more, as hospitalizations will increase.

Babies don’t have a voice- but you can speak for them.  Help prevent premature babies from having life-long lung disease! Save these families from sleepless nights in the intensive care unit, listening to their babies fighting for each breath! Save the healthcare system from the costs associated with re-hospitalization and years of treating chronic respiratory ailments.Tell the AAP to allow access to this life-saving medication to all premature babies born before 36 weeks.

Thank you for helping these tiny infants.  They deserve a shot at breathing, a shot at a normal life.

- Deb



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