Vermont ALS Advocacy - August 2022: Testimony by John Hedstrom, Territory Executive

Vermont State House
Today, the ALS Association advocated for Vermont to enact Medigap premium protections against higher premiums for persons under age 65, a proposed benefit to 50% of our Vermont ALS community.

Re: Support for Medicare Supplemental Insurance Policy Premium Price Protections for People Living with ALS Under the Age of 65

Commissioners Gaffney and Brown:

Thank you for the opportunity to speak with you today. My name is John Hedstrom, Territory Executive from The ALS Association’s New England Territory. I am speaking on behalf of The ALS Association and the roughly 46 people living with ALS and their families in the State of Vermont. I am testifying in support of premium price protections for people living with ALS under the age of 65 on Medicare supplemental insurance policies, which will significantly help reduce the out-of-pocket healthcare costs for our community.

Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disease that slowly robs a person’s ability to walk, talk, eat, and eventually breathe. The cost of care for someone living with ALS is astronomical, with annual out-of-pocket expenses reaching upwards of $250,000 per year. Medicare supplemental insurance policies, also known as Medigap, can dramatically reduce the crushing financial burden of this wretched disease.

Most people with ALS become eligible for Medicare Part A and B regardless of age the month their Social Security disability benefits start. Most patients choose to enroll in Medicare as their primary health insurance coverage. Medicare Part A covers hospital care, skilled nursing facility care, nursing home care, hospice, and home health services. Part B covers outpatient care, durable medical equipment, ambulance services and mental health.

For many of these patients, affordable private supplemental Medigap insurance is needed for their deductibles and co-pays, as Medicare Part B covers 80 percent of medical care with no limit to the outof-pocket maximum one might pay beyond what Medicare covers. Medigap plans may cover some of the costs that Original Medicare does not cover such as copayments, coinsurance, and deductibles. Not having supplemental insurance can put many people in the predicament of deciding whether to pursue certain types of care or face bankruptcy.

Additionally, the lack of federal premium price protections for Medicare-eligible patients under 65 has resulted in an uneven patchwork of state laws on this issue. Currently, 39% of people under the age of 65 with ALS receive their healthcare in states where Medigap plan options must be available to all Medicare patients, but this guaranteed access can come with a catch in the form of unregulated exorbitant premiums. As of right now 11 states, including Vermont, allow higher premiums among those 2 eligible under the age of 65, which can make Medigap plans unaffordable even if the plans are available. Currently, 23 of the 46 persons with ALS served by our organization in Vermont are under the age of 65 – the number ticks slightly higher when accounting for date of diagnosis as some people have since crossed the age 65 threshold. In addition, Vermonters often report there is a lack of information or direction when attempting to procure a Medigap policy. Indeed, many report that they should simply call around to find out which policy best fits their needs.

Because most people who develop ALS are diagnosed between the ages of 40 and 70, with the average age being 55 at the time of diagnosis, premium price protections for those under the age of 65 are incredibly important to our community. We further support the utilization of a community-rating regarding pricing as opposed to issue-age or attained-age rates. Community-rating means insurance must charge all policyholders within a given plan type the same premium without regard to age or health status.

People with ALS and their families experience high indirect costs as well as high healthcare costs. People with ALS often need expensive and nearly immediate home modification, personal and custodial care (including from family who reduce income to provide it), assistive technologies and transportation not covered by insurance. When they combine these expenses with reduced income from converting to disability status or family taking unpaid leave, the outlook is devastating. Wait lists for affordable, accessible housing exceed lifetime expectancy for many people. The cost of goods is challenging the capacity of families with skills but limited funds. People raising families fear making their children homeless or impoverished in the future if they take advantage of financing programs for people with special needs. All these Vermonters are shocked when they realize that their medical insurances do not adequately protect them at a price they can afford. They frequently tell us that they thought the point of insurance was to protect individuals and families from the worst events that can happen in our lives.

For all these reasons, we respectfully ask for your support for premium price protections. We believe that enacting these consumer protections for Medicare supplemental insurance policies for Vermonters living with ALS under the age of 65 is an important and concrete way elected officials can support those with this life-altering and devastating terminal disease.

Thank you for your time and for your consideration of this important policy proposal.


John Hedstrom
Territory Executive
The ALS Association, New England Territory

Author Information:

John Hedstrom is the Territory Executive of The ALS Association, New England Territory. John came to the Chapter by way of Washington, DC and California with an extensive background in health care advocacy and association executive leadership. He has effected change and served as the front-line voice for multiple national organizations, establishing himself as a trusted resource for many constituencies. John was born and raised in Massachusetts and now resides in the area with his wife and three children. In his tenure at The ALS Association Massachusetts Chapter, John has worked tirelessly to lead the Massachusetts Chapter to the forefront of the ALS Association. He continues to prioritize providing our families with more comprehensive care services, funding additional research, and more robust advocacy efforts.

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