reflections related to disability advocacy, family and (needed) cultural change
Thursday, February 04, 2010
Guest Post From 'A Frustrated Grandmother"
This is our Oliver. Even before he was born, we were led to believe that Oliver wouldn’t do much. Thanks to all the medical technology available nowadays, we knew he had a good chance of having Down syndrome and we knew for sure he had a heart malformation. We were given a very gloomy prognosis. Weeks at the NICU, potential heart/respiratory problems , feeding problems, weight gain problem were all predicted. Well, he beat all the odds: 3 days at the NICU, no heart related problems, excellent nursing, good weight gain, good muscle tone, responding to all kinds of social interactions, good development, happy, never ceasing to amaze us, loved to bits by all of us.
He never needed an extra trip to the doctor’s office, just the well child visits covered by his parents’ health plan. He was a good patient... until Saturday January 23rd 2010.
You see, the only requirement Oliver had was to get a series of 4 shots during the winter months to boost his immune system and avoid getting sick from RSV, a common virus, which can cause a wreck in kids awaiting heart surgery. He had his November shot and his December shot, and stayed healthy.
Then, the nightmare began.
The company that Oliver’s dad works for decided to change insurance companies. The logical thing would be that all his medical needs would roll over, but his parents discovered that the pharmaceutical company would not deliver the shot unless they re-applied and got re-approved.
There was a delay transitioning between the two insurance companies, and a further delay with the pharmaceutical company apparently.
Before the process was completed Oliver had caught a common cold. His parents dealt with the cold the way the doctors told them to. They waited for the shot the way their insurance company and the pharmaceutical company told them to. They did everything they were told to do. And Oliver ended up in the hospital with RSV and pneumonia.
Why the delay?
I am sure all of those people could find Oliver’s information just by striking a couple of computer keys. It’s hard to believe they didn’t see that Oliver needed to be treated right away. Shouldn’t patients like Oliver have a red flag and get channeled a different way than people who aren’t in as much danger to speed up the process? Shouldn’t they take care of all the procedures instead of delaying it by making parents call doctors and rewrite papers?
All the information is available. Channel these urgent cases to employees trained to deal with the procedures right away, who can tell parents not to worry, that they are going to take care of everything, that they are going to call the pharmaceutical company so they deliver the medication right away, and that parents must call back if they don’t receive it by the next day.
You think it’s crazy? Why, one can get plane tickets instantly, or get approved for a credit card instantly, or have his/her information available on the net to anyone that wants it. These companies are being paid billions and billions of dollars, but the people that are paying them are being rationed and delayed when they need help.
Are you thinking that their employees are dealing with hundreds of requests and it takes time? Oh, but wait! What did Oliver’s parents received on the mail while Oliver was still in the hospital? A notification from their insurance company warning them that they “don’t guarantee payment for services provided while in the hospital,” that the company would have to determine the “appropriateness of the admission, length of stay and level of care and would have to review it against established criteria."
The timing was cruel. It added so much stress to an already horrible situation. Were his parents supposed to take him off the ventilator and take him home?
Didn’t Oliver deserve to be treated this diligently when his mom called requesting the approval of the shot?
I don’t even know whether my complaints will fall into the right hands. I am pretty sure the people who hold the top positions in these companies have learned to isolate themselves from us, the people that need their services.
We are blessed to be in a city with good medical care and to have Oliver home with us and healthy again, but still in so many ways, the system does not work:
*Tiny doses of lifesaving medications for babies should not cost over $1000.
*Somebody else besides the company making the $$ needs to make the decisions on what treatment is needed and how fast this treatment should happen.
*The process of changing insurance companies shouldn’t delay care.
*Companies we rely on for important medications need to be timely and communicate.
We need a system that hears the people and tells us: don’t worry we’ll take care of you.
(Picture of a brown haired baby boy wearing a t-shirt that says Mommy and Daddy Love (heart) Me.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.