We have all heard about specific days, weeks and even months that are set aside in recognition of something special. Today – December 3, 2012 – is the first-ever National PKU Awareness Day. What does that mean for the PKU community?
Here are a couple things to know first about these special time periods of distinction. In the marketing realm, there’s a difference between national days and national awareness days. National days are typically reserved for organizations lobbying for commercial interests such as National Mutt Day on Dec. 2 which reminds potential dog owners to adopt mixed-breed pets. National awareness days, on the other hand, are used to identify health-related issues; some of the more well-known health awareness campaigns being in support of breast cancer and heart disease.
As a rare genetic disorder with no cure, PKU certainly falls within the national-awareness-day category. Receiving a national awareness day distinction for PKU required the support of the U.S. Senate, which unanimously passed the resolution on Sept. 19, 2012. Senators Johnny Isakson (R-Ga.) and John Kerry (D-Mass.) co-sponsored the resolution, and the National PKU Alliance, a coalition of local, state and regional organizations supporting PKU families, undoubtedly played an integral role assisting the two senators as they sought buy-in from their senatorial colleagues.
Receiving national recognition for PKU is rather moving and amidst all the excitement, I couldn’t help but daydream just what this elevated, national platform could mean for PKU. Call this a PKU National Awareness Day Wish List if you like, but here are just a few things I hope will change over the coming years with more attention brought to this issue:
- More scientists will know of and perhaps be inspired to study phenylketonuria.
- More funding may be allocated for academic research in support of PKU.
- Policy decision makers in Washington D.C. will better understand the importance of mandatory newborn screening and may eventually pass the Medical Foods Equity Act.
- Insurance coverage will increase at both the national and state levels.
- Any confusion that the PKU “diet” is cosmetic and applies to weight-loss will be eliminated.
- PKU clinics across the nation will improve thanks to shared best practices and individualized patient care.
- We may someday gain a better understanding for the differing degrees of severity found in PKU.
- The list of pharmaceutical drug therapies that are available for the treatment of PKU may increase.
- We could also see a greater variety of low-protein foods made available to patients…maybe some even available in common grocery stores.
- PKU patients and their families will experience a greater sense of community.
- We may improve upon the resources made available to women facing maternal PKU…and ultimately increase the number of successful pregnancies.
- PKU will have a greater, national identity; one that “adds a face” to what is otherwise an obscure genetic disorder.
I do not think it’s at a stretch to assume that through all of these “blue-sky” goals, National PKU Awareness Day could one day lead to a cure. With that in mind, what other items would you add to this wish list?