Dear Mr. President, Please Bend the “Arc of Justice”

Please be aware, under the Federal Employee Health Benefits Program (FEHBP) it is health care policy to afford access to lifesaving treatment with provision of medical food to children and discriminate against prospective enrollees because of AGE for phenylketonuria (PKU), a liver enzyme deficiency or inborn error of amino acid metabolism (IEM) which requires a severely restricted, lifelong therapeutic diet. Failure to continuously treat PKU results in devastating clinical outcomes, even into adulthood – such as mental illness, psychological disorders and neurological deterioration that are otherwise preventable. It is the responsibility of the US federal government to assure EQUALITY in the provision of successful working conditions and BENEFITS for the recruitment and retainment of a world-class workforce, for all federal employees - including myself - who live with PKU and equally fulfill a critical role in the provision of safe, quality health care for the nation’s Veterans. Such inappropriate discriminatory health care policy compromises public health and safety for employees with IEM, fails to comply with the Affordable Care Act and many state mandates, and does not uphold key, quality measures that integrate scientific research with clinical practice as necessary to meet national patient safety goals and standards. America does not tolerate discrimination.
Despite evidence from leading medical and scientific experts and governmental partners (NIH, FDA, academia, many medical specialty societies, and industrial leaders in nutritional therapy), individual constituent matters have been passed to bureaucrats who lack the experience and expertise in the clinical management of specialized, rare genetic disorders such as PKU. No action has been taken by policy makers to address the blatant discrimination, health care disparity and inequity under the existing FEHBP plan structure - as has been for years. I am calling on your executive authority to do whatever you can to intervene while the legislative branch has been stagnant and inadvertent – for decades – as evidenced by more than 35 years having passed since the original call for Medical Foods Equity. Because Congress has failed to pass any patient protections to resolve policy problems, these issues of the past have now evolved to 21st century obstacles to access medically essential treatment. This irresponsible governance leaves a minority population of federal employees unnecessarily and unjustifiably disenfranchised from the US health care system for which they contribute. This is not the American way, and goes against the principle, fundamental core values and freedoms of our American democracy for which this country was founded.
Please heed the call and echoes from President Roosevelt’s 1941 Four Freedoms speech and remind Congress, “Since the beginning of our American history, we have been engaged in change - in a perpetual peaceful revolution – a revolution which goes on steadily, quietly adjusting itself to changing conditions.” The government needs to change and do more - Empower - Do Not Discriminate against essential health care workers who successfully serve an integral role in public health and as stewards of taxpayers’ dollars. Medical food saved my life and my children’s lives. Continuous provision necessitates the discriminatory policy be removed so the federal workforce’s most essential asset –the people - have equal opportunity to serve, and to live a lifetime with dignity, integrity, and respect.
I refuse to be handicapped by the US federal government anymore.