FAAMA, The Food Allergy and Anaphylaxis Management Act was passed into law in the United States after being signed by President Obama on Tuesday, January 4, 2011. So what does this Act mean to you as a food allergic parent?
Here is the official summary of the ACT which was introduced in February 2009:
Requires the Secretary of Health and Human Services to develop and make available to local educational agencies, schools, early childhood education programs, and other interested entities voluntary guidelines to develop plans for individuals to manage the risk of food allergy and anaphylaxis in schools and early childhood education programs. Directs that such guidelines address:
(1) parental obligation to provide the documentation of their child’s allergies;
(2) the creation of an individual food allergy management plan for each such child;
(3) communication between schools or programs and emergency medical services;
(4) reduction of exposure to anaphylactic causative agents;
(5) food allergy management training; and
(6) administration of epinephrine.
Allows the Secretary to award matching grants to assist local educational agencies in implementing such food allergy and anaphylaxis management guidelines.
What the law will actually do in its practical application remains to be seen. At the very least, this law should give parents a legal means to fall back on in EVERY state should their school/school district administration not accomodate for their child’s anaphylaxis. Further, it allows for the legal means to give epinephrine, which seems to have been a cause for confusion or inaction in schools.
While there are many teachers and administration who have been wholly supportive of anaphylaxis plans, many parents report to me that they have been treated as second-class citizens in the school system and even have had it suggested that they home school their child. While many allergic parents do pursue this option, it should be by choice, not fear or intimidation. As a former teacher, I can’t imagine that any teacher or school would be apathetic about anaphylaxis but it has been a very real issue for many around the world.
It will take some time for the voluntary guidelines and educational materials to be developed and funding to be provided for training. But in the meantime, a very important first step has been taken for those with anaphylaxis in a school setting.
Just after Christmas I heard that a Chicago teenager had died of anaphylaxis on the last day of school before the Christmas break when she had Chinese food with her classmates. These stories always make me cry because while I cannot understand what it is like to lose a child, I can tell you that I have imagined it more than once. My heart goes out to the family of this child.
From all accounts, this was a child whose parents had well-equipped her for living with her food allergies. School staff had checked on the safety of the food to be served more than once and school officials and classmates were well aware of the peanut allergy. The details have not been released so the public may never know what exactly happened. There is some question of whether epinephrine was injected. The stories indicate that it is against Illinois law for staff to administer epinephrine unless the prescription is specific to the student. If you’d like to know more, you can read the Chicago Tribune article and the Allergic Living article.
I have many questions after reading the accounts; not in the interest of assigning blame but to understand and learn about what I can do with my own child and her school. The accounts indicate that in Illinois students are not allowed to have epipens with them and teachers can’t give another’s epi-pen to a child having a reaction. To me this is highly disturbing. Is this an indication that the fear of liability trumps medically necessary action?
So now you’re wondering, okay Alana, you title says Tragedy and Hope; where’s the Hope part? While we can never bring back these children, we can use these tragedies to better protect all anaphylactic children. After a similar death in an Ontario school, we got Sabrina’s Law. Sabrina’s Law helped provide the background for my province’s anaphylaxis policy and gave allergy advocates around the world a springboard for their own country’s anaphylaxis laws and policies. I have Sara Shannon to thank for making sure that the lessons learned from her daughter Sabrina’s death would not be forgotten. My child has benefited from that advocacy.
To that end, more hope was created yesterday in the US when President Obama signed into law FAAMA. This stands for the Food Allergy and Anaphylaxis Management Act, a national law for all states to protect anaphylactic children in schools. Voluntary guidelines and materials will be created for states to access. You can read the information about what this law means and how it came about on the FAAN website.
I look to these developments with hope to educate all about the very real risks of anaphylaxis and to prevent any more needless deaths.