Data from Icahn School of Medicine at Mount Sinai Update Knowledge in Dementia (Health insurance literacy and health services access barriers in Niemann-Pick disease: the patient and caregiver voice): Neurodegenerative Diseases and Conditions – Dementia

2022 SEP 15 (NewsRx) -- By a News Reporter-Staff News Editor at Insurance Daily News -- Research findings on dementia are discussed in a new report. According to news originating from the Icahn School of Medicine at Mount Sinai by NewsRx correspondents, research stated, “Major challenges to health care access include low health insurance literacy, prohibitive costs, and insurance barriers. Niemann-Pick disease (NPD), comprising acid sphingomyelinase deficiency (ASMD) and Niemann-Pick type C (NPC), is a group of rare, autosomal recessive, highly heterogeneous, neurovisceral, life-threatening, relentlessly progressive lysosomal disorders. Patients experience debilitating systemic and neurological symptoms and substantial emotional and financial stress.”

Financial supporters for this research include National Niemann-pick Disease Foundation.

The news journalists obtained a quote from the research from Icahn School of Medicine at Mount Sinai: “Currently, these multifaceted disorders are managed symptomatically as there are no approved therapies. Given the considerable disease burden of NPD, timely access to quality health care is paramount for improving outcomes in these life-threatening disorders. Understanding health insurance literacy and access challenges among patients with NPD and their caregivers is a first step to overcoming treatment barriers. Patients from the Niemann-Pick community participated in a health insurance literacy survey and follow-up telephone interviews on perceived access challenges. Of the 79 respondents who completed the survey, 67 participated in interviews. All respondents had stable health insurance coverage. However, 61% of respondents were unaware of Medicaid waivers and did not avail of them. Overall, 50% of respondents with childhood onset NPC selected Medicaid/Medicare and private insurance; 35% utilized Medicaid waivers. Most respondents with ASMD had private insurance only. Although the Niemann-Pick community demonstrated greater health insurance literacy than the general population, knowledge gaps exist in calculating insurance coverage, out-of-pocket maximums, and defining a formulary. The most frequently cited access burden was the process of obtaining medical care and services. Among respondents with ASMD, the greatest access burden was fear of unavailability of or access to medications and treatment. Access challenges adversely impacted patients’ mental health and exacerbated physical symptoms. Delays and denials in obtaining essential medication, equipment, and services contributed to disease progression. Caregivers faced burnout and often questioned the utility of their advocacy.”

According to the news reporters, the research concluded: “This study identified knowledge gaps in health insurance literacy and challenges to access medication and health care services among individuals impacted by NPD. Patients and caregivers need the knowledge and skills to navigate a complicated health care system, understand their rights to medication and services and, ultimately, benefit from improved outcomes, especially in a post-drug approval era.”

For more information on this research see: Health insurance literacy and health services access barriers in Niemann-Pick disease: the patient and caregiver voice. Orphanet Journal of Rare Diseases, 2022,17(1):1-13. (Orphanet Journal of Rare Diseases - https://ojrd.biomedcentral.com). The publisher for Orphanet Journal of Rare Diseases is BMC.

A free version of this journal article is available at https://doi.org/10.1186/s13023-022-02490-8.

Our news editors report that additional information may be obtained by contacting George A. Diaz, Division of Medical Genetics and Genomics, Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai. Additional authors for this research include Joslyn Crowe, Justin Hopkin.

(Our reports deliver fact-based news of research and discoveries from around the world.)