You, or someone you love, receives a diagnosis of colon cancer, and within days, or sometimes, minutes, surgery is performed. The offending lesion is removed and either permanently or temporarily, an ostomy is performed. Your life, or that of someone you love, is in the balance, but an ostomy, which is a lifesaving procedure, offers the greatest chance for recovery and survival. There is a huge sense of relief, although you, or someone you love, will have a challenge ahead. There will need to be lifestyle education around the new anatomy, making peace with the stoma and its needs, and simply adjusting to the newness of it all. You, or someone you love, will have to find out where to get the medical care and follow up that will be necessary, and where to get the supplies that the stoma requires. In essence, the stoma replaces the full functioning of the organ, or part of the organ that was removed. Imagine all of this, and then imagine you, or someone you love, has no insurance, has difficulty with the English language, and doesn’t understand what has happened to dramatically change life as it was known!
The reason I am taking you on this path is that it relates to the phone call I received this week, and it followed a similar one I received the week prior. In actuality, the first one I received was terribly upsetting because the gentleman was working and earning a salary, part of a union, and seemed entitled to his insurance providing the supplies necessary to live his life. This turned out not to be true, and this gentleman could not afford them. Not understanding the nuances of his situation, I shot from the hip and gave his wife a few recommendations. These included reaching out to the manufacturer and asking about a Manufacturers Assistance Program I had in my mind.
The second call, however, was much more serious, because the patient is uninsured and without any resources. The lovely lady who called me was from the Cancer Center at a major university and she was troubleshooting for not only this uninsured patient, but others in the same situation. This was heartbreaking to me! I reached out to the incredibly supportive Advocacy Manager, Jeanine Gleba, at United Ostomy Associations of America (UOAA,) and was near tears explaining the challenges these patients face. Not only do they have cancer, and are having surgery, which is frightening enough, but it will result in an ostomy, with all that entails, and then…they have to find and pay for supplies. Supplies are NOT A LUXURY…PATIENTS CANNOT LEAVE THE BATHROOM WITHOUT THEM!
Jeanine gave me some leads, and reminded me that all of this information is on the UOAA website. Please visit the website for all things related to ostomy, as well as the specifics regarding supplies.
Life should not always be about challenges, but for the many uninsured, it certainly feels as if it is. If you have unused supplies, or want to make a donation, please go to the website to see how you can make a difference for someone who greatly needs and will benefit from your graciousness. Imagine how much of a difference you can make in the life of someone facing such an uphill challenge, and imagine how much better you, or someone you love, would benefit from that kindness.
Thank you for sharing this sobering info.
You are a valuable resource and your heart is always in the right place.
So sad to learn about the devastating obstacles that an uninsured patient faces. Thanks for making the suggestions to donate unused supplies and to make a contribution to UOAA for those needy ostomates.
Ellyn you always make such poignant points. It is particularly interesting to me that I was just yesterday. Looking at supplies that I have that are no longer being used by me I’m thinking, how can I get this to somebody who needs them. I will go to that website you mentioned and see if I can find out how to get them to someone who could use them because it would
be such a shame to waste them, especially when I’m lucky enough to have insurance that does cover it. Once again, thanks for stating the obvious which is not always obvious to most people.
Ellyn you always make such poignant points. It is particularly interesting to me that I was just yesterday. Looking at supplies that I have that are no longer being used by me I’m thinking, how can I get this to somebody who needs them. I will go to that website you mentioned and see if I can find out how to get them to someone who could use them because it would
be such a shame to waste them, especially when I’m lucky enough to have insurance that does cover it. Once again, thanks for stating the obvious which is not always obvious to most people.
Thank you Ellyn for sharing these stories and for recommending that people check out UOAA. We unfortunately hear from many people in similar situations. The more the ASGs can have donation closets if possible that we can refer people to, the better. As always, we appreciate all you are doing to support the ostomy community.