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Connecting the Dots for People in Medicare with Autoimmune Diseases

JULY 21, 2016

Celebrating 25 Years American Autoimmune Related Diseases AssociationBy Virginia Ladd, President and Executive Director of the American Autoimmune Related Diseases Association, Inc. (AARDA)

In our last blog post, we explored the care coordination challenges facing people in Medicare with autoimmune diseases. Among the key challenges were communicating with the providers patients often see across the care continuum, diagnosing and identifying autoimmune diseases since they can affect all organs in the body, and maintaining adherence to a medication plan.

While those challenges are significant, the good news is that there are strategies to improve care coordination and help people in Medicare live as healthy lives as possible.

First, people in Medicare or their caregivers should be advocates for care coordination across the board. This means bringing a copy of medical records and list of medications to appointments to ensure that providers are aware of the patient’s care plan and medication regimen. This will help doctors understand the patient’s whole health picture and prevent negative interactions with medication. AARDA also recommends carrying a copy of medical records when traveling because you never know when you will need to seek medical care while on a trip.

Along with that, for those providers who use electronic medical records, regularly verify that the information in the records is correct and has been updated with your most recent appointments and prescriptions. With all the specialists that people in Medicare often see for their autoimmune diseases and other chronic conditions, mistakes are possible even with the most integrated systems. Print out or review your records online regularly to ensure your health status is up to date.

Second, look for providers who are assisted by care coordinators or nurses who review conditions and medications before the patient visits with the physician. People with autoimmune diseases often do not have enough time with the physician to go through all their conditions and medications, so the care coordinator can fill that gap and spend more time explaining the care options available. They can also be on call to answer questions when the patient isn’t in the clinical setting.

Medicare Advantage may offer these coordinators and often provides very good access to specialists. For example, people in Medicare with a disease like vasculitis need to see a specialist as soon as possible to prevent permanent vision problems. With Medicare Advantage, patients have access to necessary specialists and may find it more helpful than traditional Medicare.

Finally, don’t be afraid to ask questions to pharmacists or doctors about medications and dosages. Many pills and packaging look similar, while generic medication may serve the same purpose as a brand name drug but have a different name. Patients should have a conversation with their doctors about potential side effects and how long the medication should be taken. Too often there is incorrect or incomplete information on the internet or television, so only a provider can determine the best medication regimen for a patient with autoimmune disease.

AARDA offers many resources – including Patient Education Courses, the “My Autoimmune Story” Video Series, and information about the Autoimmune Coalition – for people with autoimmune diseases to learn about their condition and seek support from the patient community.

Overall, being an advocate for your health and keeping a constant line of communication open between your providers, care coordinators and caregivers or loved ones will set people in Medicare up for successfully managing their autoimmune conditions.