APPEAL FOR HELP

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Hello Forum,

Copied below is the email I sent this day to the Executive Director of NAFC, Steven Gregg, asking for help.

Perhaps you might support my request by submitting your thoughts to Mr. Gregg.

Also, I recommend you read the website; it is very useful.

VISIBLE


March 2, 2021

Mr. Gregg,

I am a grateful participant in the incontinence forum you provide.

I have this day taken the time to read through your entire website with admiration.

I came upon two flaws: a disabled topic: insurance and disbursement in the caregiver resource area; and no apparent addition to advocacy after 2012.

Those are the specific reasons I went to your website looking for help for the people in all categories you represent.

I am aware you monitor the forum. You recently responded quickly to a complaint about inability of an individual to delete an account; well done.

If you follow the forum, you would recognize an unending angst although seldom mentioned topic in the forum: the cost of protective supplies on a continuing basis. It is a substantial drain on budgets no matter the choice of protection, no matter the level of income.

Insurance closes the door on reimbursement and appeals are rejected.

I speak here of my own experience with Medicare and Blue Cross. My husband requires a system that is costly but the best solution to his Nocturia. He suffers idiopathic peripheral neuropathy that has progressed through the years. He no longer walks and is confined to a wheelchair. He cannot go to the bathroom and relies on the costly Afex Collection System at night to stay dry. Our primary care doctor and urologist attested to the need for this specific type of protection in writing and when submitted to Medicare appeal, it was rejected. It must pass Medicare before it can reach Blue Cross. The supplies are now our continuing monthly expense.

Inquiry of others would likely reveal many discouraging insurance stories. We are in our 80s but urinary dysfunction occurs at any age and could be a life long supplemental expense.

We need your help, your advocacy on behalf of the vast numbers that must not only contend with urinary medical difficulties but suffer the attendant cost for necessary protection supplies.

You present as a powerful organization. Please use your power to take on Medicare and Medicaid and insurance companies. Require they treat your members with the respect they are due; that they recognize and help pay for medically necessary urinary supplies. Request they revisit their seemingly arbitrary practices.

Thank you for your informative website and the incredibly compassionate forum.

I would like to send this same message to your Board Officers and Board Members. Would you please supply their email addresses; they are not included on your website.

VISIBLE

EXECUTIVE DIRECTOR
Steven G. Gregg, PhD
843.419.5307
sgregg@nafc.org

BOARD OFFICERS
Donna Deng, MD. Chairperson
Linnea Burman, Secretary
Eric S. Rovner, MD, Treasurer

BOARD OF DIRECTORS
David Chalkin, MD
Erica Jefferson
Lyndi M. Hirsch
Mara R. Holton, MD
Ara Sayabaliain, Ed.D
Lauren Sullivan
Andrew Stocking
Jennifer Miles-Thomas, MD FPMRS

 

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Very eloquent thank you letter. please let's sll stay informed on the progress of the appeal

 

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Thank you for writing this very eloquent letter. I hope you will hear back soon, and I hope NAFC will decide to take strong action.

 

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Hi @visible, Thank you for speaking up about this. This is something that needs action because the burden of bearing the cost of supplies is something that is too real for most if not all of us. Surely those who work in the insurance industry, which in this country, is a huge one, are affected personally and they do need to take a look at how costs of these supplies affect them as well as us. But an organization such as NAFC has the voice to take on the insurance companies as well as Medicare and Medicaid and challenge them to do better for us. And the ball is in NADC's court and it's time to take action!