Hemophilia treatment center (HTC) social workers are more than just a resource. They’re your advocate, problem-solver, and support system. But are you tapping into their full expertise?
Here, we spotlight three important yet often-overlooked conversations to bring up with your social worker: insurance changes, isolation and loneliness, and insights about your challenges and successes.
Opening up about these issues can connect you to tailored resources, a stronger support network, and personalized advocacy — helping you navigate life with a bleeding disorder more confidently.
Insurance: “My coverage has changed”
Any change in health insurance coverage can create a ripple effect through other areas of your life, so it’s best not to leave out any details.
“That’s something we can’t say enough as HTC staff members,” says Meredith Getz, MSW, LSW, a social worker at the Hemophilia Treatment Center of Central Pennsylvania. “If you have an insurance change, please let us know, because we may be proactively preparing for something months down the line. If you could tell us, hey, there’s going to be a change on March 1 and I have a procedure on March 12, we can ensure that we’re accurately coordinating your care and services.”
If you’re changing jobs and will have new health insurance, your medical providers or your specialty pharmacy may need to change, too. Your social worker can guide you through the transition.
Or, if you’re no longer insured because of a job loss, your social worker can put you in touch with resources.
“There are certain programs that only those patients who don’t have insurance can access,” Getz says. “If they need to look into their state Medicaid medical assistance insurance plans, we can navigate with their financial support. Do they need to be educated to potentially go through the health care marketplace?”
Isolation: “I’m feeling lonely”
Living with a bleeding disorder can feel isolating, especially if you don’t know other people who are in your situation. Whether you’re struggling with loneliness, feeling disconnected from friends and family, or simply need someone to listen, your HTC social worker is there for you.
“We find that if patients and family allow themselves to open up about how they are feeling, we can work with them on emotional responses, to put into context what may be swirling around in their brain,” Getz says. “We have a keen awareness of how to provide support and then direct them to resources within the community.”
Bleeding disorders advocacy organizations such as the National Bleeding Disorders Foundation have local chapters that provide programs designed to educate you about your condition and connect you with others.
“There are all these different entities for this rare disorder that can help bring patients and families out of that worry of feeling isolated and alone and to be able to connect with others and understand that there are other people — maybe in the exact same shoes that you are right now — that hopefully provides some comfort, security, and feeling of connectedness,” Getz says.
Insight: “I have a concern, but it’s not related to my condition”
Even if an issue doesn’t seem to be relevant to your condition, Getz encourages you to share it. Armed with your insights, social workers may be able to help you directly or make connections that ultimately improve care for the larger bleeding disorders community.
“Tell us what’s going on. Issues at work, or with insurance, or concerns related to family planning and intimacy — these struggles help us advocate for policy change,” Getz says. “A lot of times what really moves the needle is that many patients have this issue.”
Besides the struggles, social workers want to hear about your successes.
Once, Getz says, an adult patient figured out that letting a medication get to room temperature before injection helped to minimize the burning sensation during the administration. Because the patient told social workers at the HTC, they were able to share the revelation with the drug representative, which may be used to improve the experience for others.
“The big thing is just making sure that patients feel comfortable to share those pieces of information,” Getz says. “That way, when the hemophilia treatment center staff talks to other patients, they can bring out success stories.”