Living with ALS (Amyotrophic Lateral Sclerosis), often referred to as Lou Gehrig’s disease, involves not only immense physical and emotional challenges but also significant financial burdens. The financial impact of ALS stretches across various dimensions, including medical expenses, caregiving, home modifications, and lost income, leaving families grappling with a heavy economic burden that intensifies as the disease progresses. ALS is often called “The Bankruptcy Disease. “
We are fortunate that God blessed us with the financial means to absorb these additional costs, but others have no financial means to absorb these costs. I don’t want to spend our retirement savings on caring for me. I definitely don’t want to be a financial or physical burden to Carol! I want Carol to live comfortably when I’m gone. These are the financial decisions we wrestle with every day. The financial impact of ALS is REAL!
The initial financial strain of ALS often begins with medical costs associated with diagnosis and treatment. I needed neurological evaluations, advanced diagnostic testing, genetic counseling, and frequent visits to specialists, all of which add up even for those with health insurance. As ALS progresses, the need for durable medical equipment (DME) becomes increasingly important. For instance, power wheelchairs, essential for patients who lose the ability to walk, can cost upwards of $30,000. Ventilators and other breathing support devices, which become necessary as the disease impairs respiratory function, can cost between $2,000 and $5,000 per month. Patients who lose their speaking ability may require communication devices ranging from $3,000 to $15,000, depending on features and software. Even wheelchair mounts for eye-gaze computers can cost more than $2000 because they are deemed “Medical equipment.” Medical supplies needed for everyday care can cost upwards of $50,000 annually. Each of these items is crucial for maintaining quality of life, yet most insurance plans offer only partial coverage, forcing families to absorb high out-of-pocket costs.
In addition to medical equipment, patients often need home modifications to ensure safety and accessibility as their physical capabilities diminish. Many homes cannot handle severe mobility restrictions, necessitating costly changes like widening doorways, installing ramps, and adding lifts to raise my big ass. Each ceiling lift costs over $15,000. We have 2 in each home. Bathroom modifications—such as accessible showers, grab bars, and adjustable sinks—are also essential. Depending on the extent of changes required, these home modifications can cost tens of thousands of dollars. Our home modifications (lifts, ramps, doorways, bathroom, etc.) were roughly $50,000. Unfortunately, insurance generally does not cover these renovations, leaving families to bear the expense or resort to relocating, which presents its own financial and logistical challenges.
When you have a wheelchair, you need a specialized accessible van. The accessible van costs between $50,000 and $100,000. Because I couldn’t fit comfortably in an accessible minivan, we had to get a customized Sprinter Van (aka Big Ass Van), costing us at the top end of that range.
The need for professional caregiving represents another major financial challenge for ALS patients and their families. As ALS advances, patients become increasingly dependent on others for daily activities such as bathing, dressing, and eating. In the later stages, many require full-time supervision to ensure safety and comfort. Part-time caregiving can cost around $2,500 per month, while full-time, around-the-clock care can exceed $15,000 per month. Since I’m in the late stages of ALS, I need around-the-clock care. There was a statistic I read that only about 5% of ALS patients get a trach in the US. In other European countries, the figure is closer to 50%. That’s because caregiving expenses are so high in the US, and the European countries provide caregiving assistance. While some families initially take on caregiving responsibilities themselves, the demands of ALS often require professional assistance as the disease progresses. Most insurance policies, including Medicare, provide limited coverage for in-home care, meaning families must shoulder a substantial portion of the caregiving costs. This situation is compounded by family members frequently having to reduce their work hours or leave their jobs to provide care, resulting in lost income and financial instability. Like other ALS friends, we took a big financial hit when Carol had to retire from Southwire to take care of me. When you add up all the out-of-pocket expenses of ALS, the financial impact is over $250,000 EVERY year, not including the loss of income.
I’m sure that we’ve all rationalized that a loved one has chosen, for example, not to undergo yet another round of chemotherapy since their cancer is so far along, choosing quality of life over treatment. But flip that decision-making on its head …. Flip it to where you or your loved one chooses a very tough path to death so that you don’t destroy your family through debt or bankruptcy.
One thing that might hit home with all of you and is a conversation that Carol and I have all the time with ALS families is choosing treatments that extend life (think trach or feeding tube) …. Some patients and their families are comfortable living with the realities of ALS. Still, patients choose to forgo treatments and choose death so that they won’t bankrupt their families. Every ALS family we know has wrestled with the financial impacts of their decisions to undergo various approaches to life or death with ALS. Hence, another reason ALS is tagged as the “Bankruptcy Disease.”
Medical bankruptcy is a very real outcome for MANY ALS families. And while it might “feel better” to you when you hear the word “medical” associated with some family going bankrupt. But know this …. Financial devastation tears families apart and crushes the lives of spouses, children, and family members who try to make a go of it. These are families that live in your neighborhood, go to school with your kids, and are left to piece together their lives with little or nothing left. AND these are hard outcomes for all of us as a society. When families are torn apart, the societal costs are very, very high
The economic impact of ALS extends beyond the patient to their entire family, often resulting in a significant drop in household income. Many ALS patients lose the ability to work as their symptoms worsen, and family members who step in as caregivers may have to sacrifice their careers. This loss of income, coupled with the disease’s high expenses, leads to significant financial strain. Families may have to drain savings, take on debt, or rely on public assistance to make ends meet, which can create additional stress. For many families, the financial toll of ALS leads to a loss of financial independence, amplifying the emotional and mental burden of managing the disease.
While Medicare, Medicaid, and private insurance provide some financial support, they are often inadequate in covering the costs associated with ALS. Medicare typically covers only 80% of approved expenses, leaving patients responsible for a considerable amount. Furthermore, many essential services may not be covered, particularly those that enhance quality of life but are not directly related to life-sustaining care. This gap in coverage forces families to either fund these expenses out of pocket or go without certain equipment and services, which can negatively impact the patient’s quality of life.
Many families turn to additional resources such as government programs, nonprofit organizations, and community support to alleviate the financial burden. For example, Social Security Disability Insurance (SSDI) and Medicare provide some financial relief for ALS patients who qualify, though they often fall short of covering all necessary expenses. I’m on SSDI and Medicare, but Carol is not. Organizations like the ALS Association offer equipment loan programs, financial assistance, and support services that can help bridge some of the gaps. Families often turn to crowdfunding platforms or organize local fundraising efforts to help cover medical and caregiving costs. Whether through direct donations or local fundraising events, community support can provide meaningful relief, allowing families to focus on caregiving rather than financial concerns. Consulting a financial advisor specializing in chronic illness can help families navigate complex insurance policies, explore financial aid options, and create a long-term budget.
Living with ALS imposes not only a physical and emotional toll on patients and their families but also a severe financial strain. The high medical equipment costs, home modifications, caregiving, and lost income can be overwhelming, often forcing families into difficult financial decisions. While support networks and resources exist, they are usually limited and unable to meet the full scope of need. Increasing awareness about the actual cost of ALS is essential to mobilize further support from policymakers, insurers, and communities. Addressing the economic challenges of ALS is a critical step in ensuring dignity, comfort, and peace for patients and their families, allowing them to concentrate on making the most of their time together despite the devastating nature of the disease.
If you want to help ALS families with their financial burdens, donating to the Kerry and Gary Challenge will help ALS families in Alabama. If you would like to help ALS families in other states, the ALS Association is best positioned to help the families (just be sure to designate your gift for family support in the state you live in). Here are the links to the Kerry and Gary Challenge and the ALS Association:
kgchallenge.com
ALS.org
