Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It is a devastating illness that causes the gradual loss of muscle control and eventually leads to death. Individuals with ALS require a significant amount of medical care and assistance to manage the symptoms of the disease. However, for those living in North Carolina, accessing affordable care can be a significant challenge due to the lack of Medicaid expansion in the state.
The cost of care for individuals with ALS is exorbitantly high, with annual out-of-pocket costs reaching as high as $250,000. The ALS Association conducted a survey of people living with ALS, and one out of four respondents said they experienced significant debt or had to borrow money due to their ALS treatment or caregiving, and the respondents said that the cost of care was their number one stressor. This is why Medicaid expansion in North Carolina is crucial for individuals living with ALS.
In North Carolina, there are approximately 1,018 people living with ALS, with an estimated 154 new cases diagnosed each year. Based on a recent report by Health Management Associates, a research and consulting firm specializing in healthcare policy, we know that roughly 15 percent of people with ALS are currently eligible or utilizing Medicaid in North Carolina, but a significant amount of people fall outside the current income requirements and would greatly benefit from Medicaid expansion.
Medicaid expansion will not just benefit North Carolinians living with ALS, but it will also reduce the strain and financial burden on the healthcare system and state budget. Leaving people without access to necessary medical care, treatments, or equipment puts an even larger burden on the state’s budget because individuals end up overutilizing expensive emergency services and rehab facilities. The state can save money that would otherwise be spent on avoidable and expensive outcomes if more cost-effective interventions are implemented earlier. Additionally, providing the care people need earlier in the course of their disease means their caregivers face less burnout, better quality of life, and may be able to remain in the workforce longer.
Finally, Medicaid expansion will improve access to care for individuals with ALS who live in rural areas of the state. Many individuals with ALS are unable to travel long distances to access medical care, and without adequate healthcare facilities in their area, they are left with limited options. Medicaid expansion would increase access to telehealth and the availability of healthcare facilities and providers in underserved areas, ensuring that individuals with ALS have access to the care they need, when they need it.
We applaud the General Assembly and Governor Cooper for expanding Medicaid in the state! We also give our thanks to Care4Carolina and their impeccable leadership on this issue. Now comes the crucial work of funding the initial expansion and implementation of the rollout. We are grateful to be a voice in this effort and look forward to partnering to educate and inform North Carolinians on the benefits of expansion.
To learn about additional policy priorities and advocacy efforts of The ALS Association, please email:
Kara Cantoni, VP, Care Services and Advocacy, The ALS Association North Carolina Chapter
Lindsay Gill, Managing Director, Advocacy, The ALS Association