Kirkland father fights for insurance coverage for son’s rare disease | Letter

Eosinophilic Gastritis is a rare and hereditary disease which my youngest son, Jacob, was diagnosed with at six months after three months of losing weight and constant acid-reflux.

Eosinophilic Gastritis is a rare and hereditary disease which my youngest son, Jacob, was diagnosed with at six months after three months of losing weight and constant acid-reflux. Jacob was fortunate to be diagnosed so young, many patients go years of abdominal pain, vomiting, and misdiagnosis. Our physician had the experience to order an endoscopy and biopsy of his esophagus, stomach, and intestine. Through endoscopy is the only means of diagnosis for this disease.

At one year, Jacob’s primary source of nutrition was Elecare, from Abbott Labs, an elemental formula.  He was consuming approximately $1,200 of Elecare a month. For most middle class families this expense is out of reach and pits their family’s health against financial stability.

My family is very fortunate in many ways. Until being denied in late 2010 our insurance carrier covered our Elecare monthly costs – that was nearly three years of coverage. Even more fortunate Jacob received a clean bill of health in March 2011 – this is something that we were told would never be possible. Overjoyed my wife and I committed to help change the laws in Washington State to ensure that family’s, like ours, never had to balance their families health with financial stability.

Washington State is going through the process of defining Essential Health Benefits in accordance with the Affordable Care Act. Early 2014 health care plans will be offered on the Washington Health Exchange using these essential benefits as the base level coverage.

The Office of the Insurance Commissioner is accepting open for public comment by emailing megj@oic.wa.gov by Aug. 31.

Jeff Schwartz, Kirkland