Knowing how to help treat your disease and being able to afford those needs are two different questions. As reported in Newswise, in a study from Harvey L. Neiman Health Policy Institute, researchers found out 75% of people with multiple sclerosis (MS) experience financial toxicity (hardship caused by monetary expenditure), often making the patients unable to keep up with doctor recommendations. Anyone living with a rare disease knows just how expensive it can be, with medical bills, out-of-town trips to specialists, and difficulties keeping up a steady job. This study got to the bottom of the impact by examining the various out-of-pocket expenditures put on MS patients.
Multiple Sclerosis
Multiple sclerosis is a neurological disease that causes the immune system to mistakenly attack nerve cells due to miscommunication between the brain and body, potentially causing permanent damage. Symptoms can include weakness or numbness in the affected part of the body as well as loss of coordination, balance issues, vision and speech loss, and bladder control difficulty. Some patients experience progressive MS which causes symptoms to intensify over time; other experience the relapsing and remitting form, causing phases of symptoms followed by remission. While there is no cure, various symptomatic treatments are available.
The Impact of Financial Toxicity: A Study
The research team set off to find how financial toxicity, or the high out-of-pocket medical fees, impacts behaviors related to lifestyle and healthcare. According to Newswise, the lead author of the study, Dr. Gelareh Sadigh at Emory University said,
“Over the last 20 years, higher out-of-pocket costs for advanced imaging tests and increased cost sharing have caused the financial burdens on MS patients to escalate. Among medically bankrupt families, MS is associated with the highest total out of-pocket expenditures, exceeding those of cancer patients. Our study results demonstrate the high prevalence of financial toxicity for MS patients and the resulting decisions patients make that impact their health care and lifestyle.”
They found patients experienced financial impediment from a multitude of angles. Of the 243 patients surveyed, 56% reported their income dropped post diagnosis, 37% of which reported they lost 20% or more of their prior income. Another 35% reported they didn’t adhere to health care recommendations because of the costs of treatment.
Without more equitable care and cost-splitting, many MS patients cannot keep up with the costs that keeps their well-being in check. A study like this just proves the tremendous financial weight of a chronic disease.
