Patient Navigator: Rita Piccin

WHEN A PATIENT NAVIGATOR COMES A-CALLING: BY: RITA PICCIN

How to Make the Most of the Patient Navigators at the Lupus Foundation of America, Greater Ohio Chapter

My name is Rita Piccin, and it has been my pleasure and honor to serve as a Patient Navigator (“PN”) with the Lupus Foundation of America, Greater Ohio Chapter. Many of you may have received a phone call from myself or another PN several times throughout the year. The PNs make these phone calls to “check-in” with a lupus patient, to see how the patient is doing and to let the patient know of current and new services or assistance that the chapter provides. Maybe some of you have wondered who a PN is and what do they do? Why are the PNs making these phone calls? How can these calls help you, the lupus patient? All of these are very good questions; and I hope to answer them, so that you can make the most of the PNs when we come a-calling.

The PNs of the Greater Ohio Chapter serve a vital role within the organization. The job is pivotal in ensuring lupus patients, caregivers, families, friends and healthcare providers across Ohio have access to appropriate services, education, support, and resources. Many of the PNs have lupus or have family members who have lupus. Some of us are healthcare workers. We all bring a variety of important and useful life-experience and workexperience to our role. Knowing about lupus and understanding the impact of living with a chronic disease helps us to connect with you, so that we can work together with you to help you live your best life with lupus.

When a PN comes a-calling and asks “how are you doing?”, the PN is providing you with an opportunity to share by listening to you. You decide what you would like to share or not share, what is going well or what is challenging for you. By listening to you, the PN begins to understand your story and then begins a conversation with you about any concerns you may have. Sometimes, just having someone who can listen, understand your story, and provide support is enough. Sometimes it is not. By listening to you, the PN can help you identify issues and concerns and begin to find possible solutions.

Think of the PN as a kind of gate-keeper who holds keys to the many services that the chapter provides. We can let you know the different types of services or resources we provide and work with you to find the best fit possible. However, we do not always have immediate solutions. We then have to do some research to see if there is something available. Or, we may recommend some services or resources, but you find that these solutions are not a good fit for you or your situation. If this is the case, it is very important that you let us know. We cannot help you

find the best solution or support, if we don’t know if something is not working.

When a PN comes a-calling, we will also update you about new or existing services that we provide. For example, from January 1 - June 30, 2022 we provided patient assistance programs for the very first time. These assistance programs were targeted to help reduce barriers to receiving healthcare that some lupus patients may be facing. We are pleased to announce that these programs have been renewed and expanded. We will be offering transportation assistance, (for those who are having difficulty getting to and from their healthcare appointments), medical copay assistance (for those who are having difficulty with out-of-pocket medical expenses), and a mental health assistance program with Signature Health (for those who wish to be evaluated and receive mental health counseling). Keep an eye on your email for more information on these programs. Although these programs can only provide limited, short-term funding, they do provide some support and relief to those who need them. If you and the PN decide you can benefit from any of these programs, the PN will ask you to fill out an assessment form to start the process. The PN will be checking with you during the program, to see how you are doing on the program and to get any feedback. Again, it is very important for you to communicate with us so that we can determine if the service is useful and/or make any necessary adjustments. In addition to the patient assistance programs, we have many other resources that we offer. The following is not an exhaustive list, but does give a good overview of the information and services we provide:

• Aurinia All In Website - Lupus nephritis support community • Be Fierce. Take Control. - Lupus Foundation of America’s awareness campaign for young women of color who are not yet diagnosed with lupus • Caregiver Toolkit • Clinical Trials Information • Community Healthcare Worker Toolkit • Could It Be Lupus? Quiz • Could You Have Lupus Fact Sheet • Educational Programs • Financial Resources Information • Greater Ohio Chapter’s Events Calendar • GSK Us in Lupus Website - Lupus information and support • Healthcare Professional Toolkit • Lupus Foundation of America, Greater Ohio Chapter Website - provides lupus information, resources and services • Lupus Foundation of America National Resource Center on Lupus - the national organization’s up-todate resources and information on lupus • Living with Lupus Magazine - quarterly magazine with informative and inspiring articles and new developments in lupus • Lupus Night Light Blog - articles by Suzanne Tierney and special guest authors • Medication Information • Medical Copay Assistance Program - financial assistance with healthcare and medication copays • Mental Health Assistance Program - mental health counseling assessment and sessions through Signature Health • My Lupus Living Room - monthly podcast hosted by Suzanne Tierney for candid conversations about living with lupus • New Patient Education Class • Patient Inquiry Packet - printed materials with information on lupus diagnosis, treatment and management and information about the Greater Ohio Chapter’s services and resources • Patient Toolkit • Physician Directory - a non-exhaustive list of physicians throughout the state who treat lupus patients • SELF - Lupus Foundation of America’s free online lupus self-management program • Support Groups - lupus patient support groups hosted by facilitators throughout the state • Take Charge - Lupus Foundation of America’s free 12 week email series on managing lupus • Transportation Assistance Program - transportation assistance to and from health care appointments through Uber Health

Sometimes, it is not the PN, but the patient that comes a-calling. Caregivers, family members, friends, co-workers, and healthcare professionals call our office too. We love it when you do! Our job is to support you, our constituents. The PNs are ready and willing to assist anyone who is interested in learning more about lupus and the services and resources we have to offer. Are you interested in learning more? Do you have questions about lupus? Please contact us at 1 (888) NO-LUPUS, (440) 717-0183 or email us at info@lupusgreaterohio. org. We’d love to hear from you!