Ostomy Supply Heroes: How Financial Distress After Ostomy Surgery Inspired Four Ostomates To Create Low-Cost Ostomy Supply Programs

The economic burden of living with a permanent ostomy in the United States is something most individuals never thought about before they had surgery. Having an ostomy results in a dramatic change of toileting/elimination patterns and the need for lifelong use of disposable prosthetic devices (ostomy pouches) that must be changed every 3 to 4 days on average. Ostomy supplies are not free in the United States, as they are in many other countries around the world. Ostomates need to pay for a variety of essential supplies, and this can get very expensive. A physician’s prescription is required for insurers to reimburse for these supplies, which are only sold at durable medical equipment (DME) supply stores or distributors. 

If an ostomate is old enough to be on Medicare, they will pay 20% of the cost of supplies. If an ostomate has Medicare and a supplemental policy, they typically won’t pay anything for supplies. However, those with private insurance will incur out-of-pocket expenses according to their plan’s requirements. These expenses can be upward of $200/month for ostomy supplies after meeting the plan’s deductible, which is often excessive. The out-of-pocket financial costs can be close to $3,000 per year (Table 1), which can have a negative impact on a person’s quality of life.¹  Furthermore,  if the individual has any complications such as peristomal skin breakdown (as up to 80% do at some point), the supply costs can be doubled due to multiple daily pouch changes. Meeting the financial needs for individuals with an ostomy can be a challenging task that many were not aware of when they had surgery. People living with an ostomy find that they are having to reevaluate household budgets to include these essential expenses. 

Imagine life without being able to toilet yourself and maintain personal hygiene. This is what life is like for an ostomate who does not have access to ostomy supplies. Having access means the difference between leading an active life and being homebound. Quality of life and productivity are negatively affected when access to ostomy appliances is hampered. This can lead to depression, unemployment, and risk of severe skin infections and hospitalizations. 

When faced with the challenges of supporting your patients who are uninsured/underinsured or facing unusual financial circumstances, it is good to know that there are resources to assist these patients, in particular ostomy supplies heroes such as the following. 

Deb Fox is an ostomate who created an ostomy supply storehouse in her own backyard. Ostomy-2-1-1 (ostomysupplies.ostomy211.org/) is a 501(c)(3) organization that she created in 2014 after she found herself without insurance to pay for her ostomy supplies. Due to living with a high-output ileostomy (> 1200 mL/day), she was having to change her pouch once a day or more. Her insurance would only reimburse her for 10 appliances per month. Her local United Ostomy Associations of America (UOAA) Affiliated Support Group (ASG) helped her when she had nowhere to turn for supplies. Fox was so grateful for the help that she was inspired to start her own supply storehouse. Individuals with excess supplies can now donate them to her organization, making her able to serve approximately 100 customers a month who are uninsured or have extremely high deductibles. 

Michael Hasset formed The Ostomy Supply Exchange (OSE), a private Facebook group to which people can donate their extra ostomy supplies, and those in need can search for supplies. Hasset states his insurance deductible was $7500 a year, and he realized that he could easily purchase ostomy supplies for less than that. Many members claim that their insurance deductibles are so high that it is more economical to buy supplies online than to spend down the deductible and then still have a 20% co-payment. All deals are worked out between members on a good-faith basis. It is a great way to get supplies at a fraction of the original cost.  

Kindred Box is a 501(c)(3) organization created by Christine Kim. This organization provides free ostomy supplies for disaster relief and to U.S. veterans in need since 2017. They also offer low-cost supplies to people in the United States who are facing challenging circumstances such as being uninsured or underinsured. Kindred Box (www.kindredbox.org/) accepts donations of all types of pouching systems for both adults and children. Kim founded Kindred Box as her chance to pay it forward to the ostomy community. She too, like Fox and Hasset, experienced having to pay out-of-pocket for ostomy supplies at the young age of 21 after undergoing life-saving surgery due to Crohn’s disease.

Osto Group is a not-for-profit 501(c)(3) organization that provides discounted ostomy supplies to the uninsured, underinsured, and those with high deductibles. This organization was also created by an ostomate, Stephanie Sullivan, when she saw that many people at her local support group were desperate for ostomy supplies because they had no insurance. This warehouse operation distributes ostomy supplies at a nominal fee for those who have fallen on hard times. They ask only for shipping and handling charges. Donated supplies are inspected, sorted, and inventoried at the warehouse facility. People can order on-line (www.ostogroup.org) or by phone.

Low-cost ostomy supplies can also be purchased from distributors that do not accept insurance, and this keeps pricing down. Parthenon Ostomy Supplies, StomaBags, and Best Buy Ostomy Supplies are just a few. Many ostomy manufacturers also offer patient assistance programs for a limited time to those in need. Some ostomates have been known to shop on Amazon or Ebay for products as well. 

UOAA has 300+ Affiliated Support Groups all over the United States. Many of these have supply closets and will accept donations from members and then donate them to ostomates in need. The National office does not have ostomy supplies.

With increasing demands for affordable ostomy supplies, these self-made, non-funded ostomy warehouses are just a quick fix. UOAA is continuing to pursue legislative actions at the federal and state levels and also advocates with key decision-makers to improve access to care and supplies. Future work should explore patient-driven recommendations to reduce the economic burden after ostomy surgery. Nurses and physicians involved in ostomy care have a responsibility to educate patients about the need to purchase ostomy supplies and the costs that may be incurred. 

UOAA does not endorse particular products, manufacturers, DME providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.