Joy McVey Hugick
Since its founding thirty-two years ago, the Oley Foundation has placed people on home parenteral and enteral nutrition (HPEN) therapies at the center of its focus, enriching the lives of those requiring home intravenous nutrition and tube feeding through education, outreach, and networking. In recent years, Oley has increased its efforts to raise awareness about HPEN, including activities to educate decision makers about some of the unique issues people on home nutrition support face. By voicing the needs of its membership, Oley helps drive public policy and advance medical research.
This activity can be described as “advocacy,” which is defined generally as the act or process of supporting a cause or issue. Advocacy can occur on a local, state, or federal level. It includes activities such as developing educational materials, tracking important policy initiatives, and teaching others about HPEN therapies, which can include lobbying for legislation to improve care or reimbursement.
As an organization, Oley serves its members by providing updates on key legislative and regulatory initiatives, along with talking points and sample letters to provide a cohesive message. Oley also collaborates with partner organizations on advocacy efforts and facilitates providing the consumer experience to Congress and the Administration.
Individually Unique, Together Complete
With Oley’s support, we are empowered as a community of individuals to advocate for ourselves, our families, and others on HPEN therapy. We can do this not only by advocating locally—by educating our family, friends, and community—but also by increasing our reach all the way to our nation’s capitol by educating our legislators (i.e., members of Congress) and regulators (i.e., employees of federal regulatory agencies) about what we, as HPEN consumers, need from them.
In the era of patient-focused drug development, our participation as consumers is welcomed now more than ever by those regulators tasked with implementing the laws passed by Congress, like personnel at the Food and Drug Administration (FDA). Oley members constitute a community of sophisticated consumers, caregivers, and clinicians who can communicate the HPEN consumer experience incredibly well. While we may differ in our diagnoses, we are united by HPEN therapy 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 important role in the public policy process. By translating for decision makers how their policies impact our day-to-day lives, we can help inform them to improve access to, and reimbursement for, our national health care system. Won’t you join me in asking Congress and the Administration to support us?
Recent Advocacy Efforts
Oley Ambassadors Betty and Bettemarie
Bond meeting with Congressman
Oley has stepped up its advocacy efforts, including being actively engaged on issues related to drug shortages and patient-focused drug development. In May 2015, Oley facilitated consumer participation in an FDA public meeting focused on gathering the patient perspective on functional GI disorders. Two Oley Ambassadors, Bettemarie Bond and Lynn Wolfson, provided in-person testimony and many other members provided written comments.
As part of HPN Awareness Week in August 2015, Oley hosted “Awareness, Advocacy and You,” a webinar presented by health care attorneys Alan Parver and Leah Stone. Alan and Leah discussed why creating awareness and participating in advocacy efforts are important and offered an update on some of the current policy issues of interest to HPEN consumers and their caregivers, like the Medicare Home Infusion Site of Care Act of 2015. Following the webinar, Oley initiated a letter-writing campaign encouraging consumers and caregivers to urge members of Congress to cosponsor the act.
This October, Oley and its members will participate in the Digestive Disease National Coalition’s (DDNC) Fall Public Policy Forum. At the forum, patients/consumers, health care providers, and industry representatives will receive legislative updates and advocacy training, as well as meet with members of Congress and their staffs to discuss issues of concern.
How to Become an Effective Advocate
Your voice matters and you don’t need to physically travel to use it. Understanding the importance of educating policy makers and developing your advocacy skills is the first step in becoming an effective advocate.
Members of Congress and regulators need to know the impact their policy decisions have on consumers. HPEN is a complicated, technical area, which can be challenging to understand. Many policy makers are generalists who do not have personal experience specifically with nutrition support, but want to understand consumer issues in order to better serve their constituents. You can help increase their understanding by sharing your personal story. The key is making it simple and easy to understand.
There are various approaches to advocacy and education of policy makers. These include several individual methods of contact, such as:
- Sending letters, emails, or faxes to Congress,
- Calling Congress,
- Tweeting your legislator, and
- Conducting personal visits with Congress, which can occur in Washington, D.C., or in the legislator’s home districts and states.
Here are some tips to keep in mind when communicating with Congress:
- Make it personal. While Oley may provide sample letters to serve as guidance, use your own words to share your personal story and to explain how the issue directly impacts your life.
- Keep it simple. Make your message easy to understand. Define terms and avoid using jargon, when possible. Keep your position logical.
- Be crystal clear on your “ask.” Make it easy for them to act. If you are asking your legislators to support a bill as a cosponsor, provide specifics like the name and contact information for the original sponsor (or their staff).
- Numbers speak louder than words. Provide back-up documentation, including any recent data and statistics, to help reiterate your message. Do you know the number of people impacted in the legislator’s district or state?
- Express gratitude. Always send a thank-you note to members of Congress and their staff and follow up with subsequent communication to stay on their radar.
- Track results. Let Oley know about your advocacy efforts so they can keep track of positive outcomes on policies they are working to advance, like if your Senator agrees to cosponsor a bill.
Some parting tips:
- Do your homework! Learn about your legislators, including their committee assignments, biographical information, and interests. You may have a personal connection or may be able to use this information to frame your issue to relate to them! Find out if the issue you are inquiring about falls within their committees’ and subcommittees’ jurisdiction.
- Relationship building matters! Try to establish a positive, ongoing relationship with your representative and senators. It will increase your influence as a constituent in the future.
- It’s never too late to advocate! While it’s ideal to get involved in the legislative process early on (i.e., while legislation is being considered by Congressional committees), you can still contact your legislators when it is on the House and Senate floor.
- Don’t get offended if your representative or senators asks you to meet with one of their staff members instead of themselves. They are very busy and often times their staff members have more specific knowledge about the issue you are there to discuss.
To learn how Congress works, visit Congress.gov, the official website for U.S. federal legislative information.
LifelineLetter, September/October 2015