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Managing Multiple Autoimmune Diagnoses

This session featured Jaime Holland, IBD patient and caregiver advocate, Hetlena Johnson, lupus patient and advocate, Molly Schreiber, patient and Community Manager for Savvy Cooperative, and Selina Samaniego, patient and founder of Nix Essentials, who came together to talk about finding balance with multiple autoimmune diagnoses.

Recorded October 2021 at the Autoimmune Community Summit.

Maintaining Your Records

Working with different doctors, hospital systems, or payers presents big challenges to continuity and consistency. As patients try to keep their own care coordinated, it becomes exhausting repeating symptoms and stories over and over again.

“Apps,” Hetlena began, “can keep your information together, and allow you to print or send an email report to other doctors. But even though we give permission to share records from one doctor to another, we have to be the CEO of our own healthcare.” Patients should not assume records are delivered where and when they need to be.

Selina, found a way around having to repeat and explain herself repeatedly with every new doctor. “I found one doctor I really trusted, and I went to her to manage my care. Before I go anywhere else, I consult with her because she understands my overall health. And even though she doesn’t know how to treat my Ehlers Danlos or Lupus, she does know enough to give me advice on what to watch for.”

TIP: “Take notes at every doctor’s appointment, and take those notes to your next doctor.” – Selina

Jaime, who had open communication in her doctor’s office, had to start over when the practice got absorbed into another health system. “There was suddenly a third party gatekeeper between me and my doctor’s office.” Getting records or asking questions became very cumbersome, but because she had a healthy relationship with doctor and staff, she asked for a direct connection and got one.

TIP: “Ask your doctor or their staff if they have a direct number or email you can use.” – Jaime

Tools to Make the Most of Appointments

Apart from your medical records being present for appointments, you should also bring any questions or updates with you, written down.

“Bring a notebook, tablet or phone – wherever you’re keeping your notes written down – and bring it with you or, ideally, get it to the doctor ahead of time.” – Hetlena

“I always carry a list of my symptoms and medicines with me. Every doctor’s appointment asks about it, and I don’t want to forget something, especially during a flare where I might not be thinking clearly.” – Selina

Caregivers, too, should maintain a list of medicines, doses, and changes to meds as they happen. – Jaime

“I try to send my concerns ahead of time, not just so I won’t forget to ask, but so that my doctor can be better prepared to answer.” – Molly

Understanding Your Medication Better

With each specialist in their own silo, medications can come from multiple providers without much thought for interactions between these medications. It’s in every patient’s best interest to search for interactions between medications. While pharmacists should be doing such checks, multiple conditions could mean multiple pharmacies.

“The systems to check for interactions are great,” said Molly, “but they’re not perfect. When I’m given a new medication, I check it out myself”.

Resource: Search “Drug Interaction Checker” online to find several options.

Insurers Interfering with Doctor’s Orders

Insurance companies often interrupt the care a doctor provides by insisting on prior authorizations, a process that, on its own, can take weeks or months to be settled. That process could and often does result in the insurer insisting other (cheaper) therapies be attempted first. Try this, if it fails, then try this other thing, and if those fail to help, you can get what your doctor wanted in the first place. That process is called step therapy or fail first.

Regardless of the name, these delays often leave patients mistreated, leading to worsening of the underlying condition. For those managing multiple diagnoses, a delay here can cause a cascade of problems with other treatments. Additionally, there is an emotional and psychological toll associated with a patient’s loss of agency.

But there is an unexpected ally in this process – the drug manufacturer. “A lot of companies,” explained Hetlana, “do work with patients to help them get access to their medication.” Manufacturers, after all, have an interest in patients getting onto their treatments.

TIP: Reach out to the drug manufacturer through their patient assistance program to ask for help. – Jaime

Learn more about the Summit

We tackled the most pressing topics that impact patients and caregivers living with autoimmune conditions.

Learn more about the Autoimmune Research Network (ARNet)

Together, we’re accelerating the pathway to breakthrough treatments.