(Washington, D.C.) – Patients Rising, a leading patient advocacy organization, says that a startling number of patients from across the country, all living with the same rare disease, have come forward with the same story.
These patients are living with a rare and chronic autoimmune disease called myasthenia gravis, and are being denied access to the same doctor-recommended treatment: intravenous immune globulin, or IVIG therapy.
“MG patients deserve access to the treatment recommended by their doctor,” said Terry Wilcox, co-founder and executive director of Patients Rising. “Insurance companies are denying MG patients access to a treatment that we know works.”
The National Institutes of Health includes IVIG therapy among its list of treatments for MG on its disease information page. Research published in the journal Neurology has confirmed “level 1 evidence for the effectiveness of IV immunoglobulin in patients with worsening weakness due to myasthenia gravis.” In the landmark article, International Consensus Guidance for Management of Myasthenia Gravis, published in Neurology in 2016, top experts agree that, “The use of IVIg as maintenance therapy can be considered for patients with refractory MG or for those in whom IS agents are relatively contraindicated.”
“Patients living with rare diseases are often the most vulnerable to insurance barriers to access—especially as nearly all treatments for diseases like myasthenia gravis are used off-label,” said Nancy Law, CEO of the Myasthenia Gravis Foundation of America. “It does not make sense for people with refractory MG to have to wait for insurance approval for treatment until they are in respiratory crisis, too often requiring extensive hospitalization in ICU with intubation, when health can be maintained through regularly scheduled treatments. We appreciate that Patients Rising is helping MGFA to bring attention to this issue.”
IVIG therapy is universally accepted as an effective treatment for a specific population of myasthenia gravis patients. We have highlighted a few of these patient stories below from Maryland, New York, Ohio, Pennsylvania and South Carolina – all of whom have recently been denied by their insurance company.
“I wish insurance companies could spend a week living the life of an MG patient who is experiencing an exacerbation of symptoms without access to the one treatment they know will help,” says 26-year-old MG patient Kait Masters, who lives in South Carolina.
Since the age of 11, she’s visited nine different neurologists before discovering the most effective treatment for her. When her insurance company, United Healthcare, refused to cover IVIG therapy, she turned to a compassionate care program from an out-of-network infusion company.
“IVIG has changed my life,” Masters says. “It has allowed me to find a job, find a sense of purpose, and no longer have nights afraid that I will stop breathing in my sleep.”
MG patient Jill Ford, who lives outside of Philadelphia, has been hospitalized multiple times, including three trips to the ICU, yet United Healthcare continues to block access to the IVIG therapy.
“These insurance companies hold all the cards. They have all the power,” says Ford, who is weeks behind in the treatment schedule prescribed by her doctor. “If the decision-makers could live one day in our shoes, they would understand the pain and agony – the emotional and mental stress — not just on us but our families.”
Myasthenia gravis impacts the voluntary muscles in the body, which can make it difficult to use limbs, swallow, talk, and even breathe. MG symptoms often worsen when the affected muscles are used, which limits the amount of activity MG patients can perform.
“My insurance denied IVIG therapy, claiming it would only be approved with exacerbation,” shares Cindy Capraro, an MG patient from New York, whose mobility is limited to just three hours per day. “My whole life is an exacerbation.”
“Without the IVIG therapy, I cannot take deep breaths,” explains Christina Thompson, who received treatments at Baltimore Washington Medical Center in Glen Burnie, MD. “With the regular IVIG I can take full deep breaths, I can cook dinner, get the laundry done, go grocery shopping—maybe not all in the same day, but I can do it.”
“To date, we have received dozens of stories from patients denied treatment in 2017 alone,” Wilcox says, “it is our hope that by bringing attention to these patient stories that insurance companies will find an acceptable protocol to approve these claims for the specific patients who need IVIG treatment before they find themselves struggling to breathe.”
Any MG patient who has been denied access to a treatment recommended by their doctor is encouraged to call Patients Rising’s patient helpline at 202-750-1168, or email: firstname.lastname@example.org.
Patients Rising, a leading patient advocacy organization, was formed to stand up for patients, advocate for their rights, and fight for their access to the medications they need and deserve.