On Your Behalf
Many advocacy groups schedule visits to state and federal legislators in late winter. It’s a time when legislators are available in their offices. Oley executive director Joan Bishop was in Washington, D.C., and Albany, New York, this winter, helping legislators understand what it is like to suffer from digestive diseases and be dependent on nutritional therapies like enteral and parenteral nutrition, and why they should support legislation aimed at helping these constituents.
Hannah’s Law
In Albany, Joan joined the Devane family and several other Oley members whose children suffer from severe food allergies for a state Legislative Lobby Day hosted by Assemblyman Greg Ball. Assemblyman Ball has drafted, introduced, and has bipartisan support for Hannah’s Law, which will ensure that all insurance plans in New York State will cover the cost of elemental formula, regardless of whether it is taken orally or through a tube.
Many children, including Hannah Devane, drink an elemental formula that is manufactured to be fed through a tube. Children in Hannah’s situation do not have tubes in place, and this interferes with reimbursement for very costly formula that is necessary to sustain the children.
Capitol Hill
In March, Joan met several Oley members in Washington, D.C. They came together with clinicians and representatives from homecare companies and digestive disease organizations (including Crohn’s & Colitis Foundation of America, United Ostomy Associations of America, and Celiac Disease Foundation) to put a “face” to diseases and related therapies. Our representatives on Capitol Hill often have limited knowledge about “living” with complicated diseases and therapies—and these are the folks who are making decisions, and introducing, sponsoring, and voting on legislation that can affect you (for example, increasing or decreasing the budget for NIH research and/or for restructuring and strengthening the FDA).
We are grateful for the support of those who were able to join us for these efforts. Perhaps you will consider participating next year.
Joan’s Observations
“I repeatedly witnessed representatives or aides,” said Joan, “become speechless as families candidly described their circumstances, medical challenges, strategies for survival, and so on.”
“The plan of attack to educate the legislators,” she continued, “always included a bit about how ‘normal’ the rest of the consumer’s life was—attending school, working, volunteering, and being one of their constituents who votes. The emphasis was that they simply ‘eat’ in a unique way that is complicated and which classifies them as medically fragile.”
Consumers were allowed to present their situations to individual legislators and/or their staff, in small, private groups. “Words cannot describe the interest and amazement legislators expressed as the consumers’ situations unfolded. This reinforces the need to make more visits and introductions to keep the ‘face’ of homePEN therapy in the forefront,” Joan added.
Most elected officials—at all levels—host town hall meetings. These offer an excellent opportunity for you to introduce yourself as a constituent who receives intravenous and/or tube feeding to sustain yourself. It’s a worthwhile experience. Please don’t hesitate to contact Joan for more information at bishopj@mail.amc.edu.