- Meet Consumers/Patients
|Your Voice on Capitol Hill|
Your Voice on Capitol Hill
Joy McVey Hugick, Oley Ambassador
Oley members play an important role in the public policy process, whether we’re describing the consumer experience to legislators drafting new laws or explaining how changes in regulations or standards will impact our lives to regulators who are charged with implementing laws once they’re passed.
One way Oley members advocate for home parenteral and enteral nutrition (HPEN) therapies is through the Digestive Disease National Coalition (DDNC), which is a non-profit organization that focuses on improving public policy related to, and increasing awareness about, digestive diseases. Established in 1978, DDNC includes patient and professional organizations.
Last October, Oley was represented by several of its ambassadors, members, and staff at DDNC’s first-ever Fall Public Policy Forum in Washington, D.C. The fall forum provided an opportunity for targeted and strategic outreach to congressional members on key health committees or with an interest in health care issues and medical research.
Thirty patient/consumer advocates, health care providers, professional society representatives, and industry members assembled to network and discuss legislative and policy issues of interest to the digestive disease community. We received advocacy training and broke into teams with complementary priorities to develop strategies for conducting effective congressional visits. We then swarmed Capitol Hill to meet with and educate congressional members and their staff on issues such as The Medicare Home Infusion Site of Care Act (S. 275/H.R. 605), The Functional GI and Motility Disorders Research Enhancement Act (H.R. 2311), funding for the National Institutes of Health (NIH), and other relevant topics.
The impact of these meetings has already been realized in two very tangible ways. First, Congress passed a consolidated appropriations bill for FY 2016 that included funding NIH at $32 billion, an increase of $2 billion above FY 2015 and the largest increase to their budget in twelve years. Second, after one of our groups met with the legislative director for Congressman Keith Rothfus (R-PA-12), Mr. Rothfus became a co-sponsor of The Functional GI and Motility Disorders Research Enhancement Act. Both of these actions demonstrate how valuable advocacy efforts can be. We can make a difference!
Spring into Public Policy
DDNC hosted its 26th Annual Spring Public Policy Forum in March in Washington, D.C. One hundred fifteen participants, including nearly forty patient/consumer advocates, were placed into teams by geographic region and visited one-hundred congressional offices spanning twenty-five states. Again, Oley was well represented.
This year’s theme, “The Value of Patient Engagement in Quality Care,” was emphasized through the legislative priorities highlighted and the messages presented to the groups before the teams dispersed to visit the Hill. Oley Ambassador Lynn Wolfson was invited to share her story of living with Hirschsprung’s disease and doing advocacy work. This was a meaningful experience and Oley participants plan to attend future DDNC policy forums.
Have your voice heard to help improve outcomes for the digestive disease community by participating in future DDNC events. For more information, see www.ddnc.org.
Using Your Voice Locally
If you’re not inclined to travel to D.C. or aren’t impacted by digestive diseases, your voice is still very important. We are united by HPEN therapy, regardless of our diagnoses, and we all face challenges regarding access to care and availability of treatment options.
Participating in Oley’s advocacy efforts is a great opportunity to have our voices heard and allows us to play an integral role in the public policy process. You can meet with your members of Congress in their field or district offices and get to know their staff. It’s helpful to have those relationships, especially in the future when you’re asking for their support on legislation, or a regulatory or personal issue. You may also participate in stakeholder meetings to provide the patient/consumer perspective via the Internet or phone when an event is taking place in Washington, D.C., or elsewhere. If you are interested in participating in Oley’s advocacy efforts, check the website and Facebook page regularly; updates are posted as policy initiatives arise.
LifelineLetter, March/April 2016