Advocates on your side
MS Navigators also connect people affected by MS to other sources of specialized support. For example, if callers have questions about Medicare, or Medicare combined with Medicaid, they may be referred to their State Health Information and Assistance Program (SHIP). SHIP counselors can provide one-on-one assistance to help people understand insurance options, compare supplemental insurance products and apply for insurance or prescription drug assistance. The Health Insurance Marketplace created by the ACA also has a staff of “insurance navigators” to help consumers research and enroll in a health insurance exchange (see sidebar on previous page).
In addition, pharmaceutical companies “can be a wealth of knowledge,” says Valerie Stickel-Diehl, MSCN, an MS-certified nurse at the Mercy Ruan Neuroscience Center in Des Moines, Iowa. Many of these companies offer patient assistance programs. People with MS can enroll in these programs, or they can ask their healthcare provider to contact the company directly. “[Pharmaceutical representatives] know which insurance companies are covering what treatment and can assist with the process. They all have advocates on their staff whom I can talk to,” Stickel-Diehl says.
The ‘go-to’ person
Healthcare facilities may also have staff members designated to provide support services. Stickel-Diehl says she is the “go-to person,” or care coordinator, at Mercy Ruan. In fact, to be recognized by the Society as a Center for Comprehensive MS Care through its Partners in MS Care program, a facility must have a care coordinator on staff.
One of the most important things a care coordinator can do for people with MS is to help them understand their personalized care plans. “I meet with all newly diagnosed patients and give them my card with my direct phone number,” Stickel-Diehl says.
But it’s not a solo effort. “Patient advocacy is everyone’s role in our center,” Stickel-Diehl says. “My role is to make sure our patients leave here understanding the next step, the plan of care and whom to call. Newly diagnosed patients are starting a new journey in healthcare. They have many questions and may need assistance forming them. Many of their questions lead to more questions, which is expected. I help patients organize their thoughts and prepare for their appointments so they are able to receive the best care available. Providing the best possible care leads to healthier patient outcomes.”
People who have been living with MS longer may find that care coordinators can be helpful with weighing changes in treatment plans, evaluating rehabilitation options and wellness strategies, understanding insurance issues, and even initiating a discussion about long-term care. “If a person [anticipates having complex care needs] for an extended period, he or she may want to identify a program that offers care-management services,” says Rachael Stacom, an MS-certified nurse and senior vice president of care management at Independence Care System in New York City.
Distance doesn’t have to be a barrier, either, because healthcare providers often consult with each other via phone or email to get the answers they or their patients need. Stickel-Diehl says the neurologist on her team gets many calls from general neurologists in the Midwest for second opinions on treatment and care, and similarly, she may call Society staff with people’s questions about disability benefits.
Advocates for hire
People living with MS can also seek out independent patient advocates—those not affiliated with any hospital or nonprofit organization. These advocates, who may or may not have in-depth knowledge of MS, offer their services for a fee. Often, independent advocates focus on helping their clients manage insurance claims and find the healthcare specialists they need. But advocates can do more, including arranging for transportation to and from medical appointments.
As a profession, patient advocacy is relatively new, and may be practiced by nurses, physician assistants, social workers, medical billers, insurance advisers and even caregivers whose personal experience motivated them to make it a career. There currently is no national or state certification or licensure for fee-based patient advocates, and no actual qualifications are required to hang out a shingle. However, a committee of practicing patient advocates and academics is working on national certification for independent patient advocates.
Committee member Trisha Torrey, founder and director of advoconnection.com and The Alliance of Professional Health Advocates (APHA), estimates it will take two to three years to develop that standard.
There’s no set fee for independent patient advocates, and payment will likely come out of your own pocket, as their services generally are not covered by health insurance. In addition, patient advocates are not yet designated as a qualified medical benefit by the Internal Revenue Service, and the IRS has not provided clear guidance on whether these services are tax deductible or can be paid for with a health savings account or employer-sponsored flexible spending account. However, some employers do offer patient advocates’ services—sometimes at no cost.
Fortunately for Perry Joyner of Angier, North Carolina, his employer was one such company. “After the shock of being diagnosed with MS settled in, it didn’t take me long to realize that my insurance company did not understand or appreciate the special needs of people with MS compared to people with other conditions,” he says. “For instance, they didn’t understand how MS can affect my vision and why I needed to have multiple eye exams done each year.” Joyner turned to his doctor and the Society for help, and the patient advocate that his company hired also eased some of the insurance headaches.
“People newly diagnosed with MS have questions; however, they don’t always ask them due to the fear of this diagnosis,” says Stickel-Diehl. “I help people organize and ask those questions, but we hope they always know where they can go for help and advice.”