Optimizing rare disease care for health plan members

Rare diseases, sometimes referred to as orphan diseases, likely affect only a small percentage of your health plan population. But these complex medical conditions can bring significant emotional and physical challenges for plan members, their families, and their caregivers. Specialized care and support can help to enhance the well-being of those affected by rare diseases and is the mission to which our Accordant program is dedicated.

Understanding rarity

In the United States, a disease is considered rare if it affects fewer than 200,000 people. But with more than 7,000 recognized rare diseases,¹ the total, combined rare disease population is sizeable.  

Receiving a rare disease diagnosis can be frustrating and confusing for members, and often can be delayed due to lack of awareness among health care providers and wide-ranging symptoms that can be misleading. Once a diagnosis is reached, establishing specialized care may seem daunting.

Accordant provides one-on-one nurse support for members with rare conditions. Our nurses can help members understand symptoms, side effects, or flare-ups when their doctor is not available; and provide emotional support when members have questions. Further, our Accordant CareTeams – available 24/7 – can help members understand their plan and benefits. They help to ensure that members can get the medication, supplies, financial support, and other resources they need to manage their health. And they can access information in real time through access to electronic health records (EHR), ensuring that they are always equipped with the most current data.

Further, Accordant supports caregivers, working directly with them to help:

• Support the health of members with complex conditions
• Navigate the health care system and benefits
• Make decisions related to long-term health
• Give loved ones increased independence, and caregivers peace of mind

“Managing rare diseases can have major impacts on quality of life for patients and caregivers. The Accordant team offers support to caregivers as well and will screen patients for depression or behavioral health needs that could prevent them from more effective self-management,” says Andrew Krueger, MD, senior medical director at Accordant Health Services.

For a list of rare diseases supported by Accordant, visit our website.

Focusing on epilepsy

Epilepsy is just one of the many complex conditions supported by Accordant. Some people may have multiple types of seizures or other medical conditions in addition to epilepsy. These factors play a major role in determining both the severity of the person’s condition and the impact it has on their life. Epilepsy can be controlled, and up to 70 percent of people with the condition could become seizure-free with drug therapy.² Successful self-management requires active coordination between the member, health care providers, family and friends, and the Accordant CareTeam.

Epilepsy is the most prevalent rare disease in the Molina Healthcare plan member population. Molina partnered with Accordant to provide comprehensive management of these members, Our CareTeams provide assistance with multiple issues including concerns arising from social determinants of health (SDOH):

• Discuss ways that symptoms and side effects can be managed
• Support overall emotional and physical health
• Get members the support they need, such as financial resources, support groups, and transportation assistance
• Improve overall health management

Meet Tom

Tom is a 47-year-old male Molina Healthcare member who was originally diagnosed with epilepsy at age 15. Throughout his life, he has struggled with homelessness, alcohol and tobacco use, comorbidities, and mental health concerns. Following a hospitalization in February 2023, he received an initial Accordant risk assessment, which focused on his medical history and evaluation of SDOH risk factors.

The Accordant CareTeam member shared with Tom a wide range of available resources, including legal advice, disability benefits and clothing, housing programs, and more. A Resource Specialist helped Tom to complete the paperwork necessary to access these programs.

Noting a history of noncompliance, the Accordant nurse also educated Tom on the importance of taking his anti-seizure medications as prescribed.

Connectivity is key to enabling ongoing, effective Accordant support of plan members; two-way communication takes place by phone or secure messaging. The Accordant Resource Specialist also provided Tom with a free smartphone and service from True Connect, a program enabled by Molina Healthcare. 

Partnering for member support and empowerment

Accordant continues to work with Molina on case coordination for Tom, working together to support his needs and achieve improved clinical outcomes.

Care for plan members with rare diseases and their caregivers and families is enhanced by the power of partnership. By joining forces with health plans, Accordant is even better equipped and empowered to serve this population and its unique needs. Further, an Accordant partnership can help health plans reduce total costs.