Government Health Insurance Coverage Horrors

[Ron]

Please read my letter posted on John Edwards site and comment there. I will leave the link for you. Thanks. This is for all of us. Ron

http://blog.johnedwards.com/story/2007/12/16/72221/769

Government Health Insurance Coverage Horrors

Ron Jordan, President Western Mass Area Local of the American Postal Workers Union

Dear John,

I have supported you in the past and God willing will support you as the next President of our country. I have consistently watched your commercials and saw your interest in resolving the health insurance dilemma that we are suffering in this country. I have contacted all the other candidates ( Sen. Clinton and Sen. Obama with no response) and even my own politicians as well as the media across the country with no results.
I have received no response as to my health problems and can't imagine why . It's unimaginable to say the least since this has been a priority for all these candidates. I've even written Oprah and Montel Williams knowing their exceptional views on this issue dealing with health insurance and again no response.

The reason I'm sending this to you was on the advise of one of your staffers who asked me to campaign for you in New Hampshire. I had to refuse because of the back and leg pain I suffer from the long traveling that will be involved. Today, I write to you about a tragic story that has been unfolding within my family throughout the course of my marriage and my career as a federal worker. For years I have suffered from debilitating back pain. The only treatment offered to me for many years consisted solely of painkillers. For most of my life, my problem went mistreated and undiagnosed. This has left me with a horrible choice to make. I have been forced to either experience excruciating pain or drug myself with painkillers which sometimes didn't work. Both options forced me to miss out on many experiences with my daughter and my wife. I've done the best that could be imagined given the circumstances, but there's only so much anyone can do when in horrific back pain.

In recent years, a glimmer of hope appeared in our lives. My back problem was diagnosed as degenerative disc disorder located primarily in the L5-S1 disc. I had a ruptured disc! It was a relief to finally put a name to what had hung over our lives for such a long period. My family also found out of a possible treatment for my disease. We thought that a new surgery which was approved by the FDA in October of 2004 may finally grant me some newfound comfort. The surgery consists of inserting the Charite artificial disc into my back in place of the degenerative disc. I found doctors willing to perform the surgery of which they said I was a perfect candidate and things began to look up.

However, things soon took a tragic turn when my insurance company was contacted. I was insured by ConnectiCare and had not expected any problems to occur but they claimed that the surgery was experimental and investigational. I being an experienced union official with the American Postal Workers Union quickly reminded the insurance company that they were legally mandated by the Office of Personnel Management to afford me the surgery since I was a federal worker. This came to deaf ears since I am the first federal worker in the country to challenge the insurance companies over this issue.

I then approached Congressman Olver's office which was not in my district but was located a block from where my office is. They were sickened by the lack of response that I received from the insurance company. They faxed my records to Senator Kennedy, Senator Kerry and Congressman Neal's Office who is in my district. I thought that would be the catalyst to overcome the hurdles that I endured. That was almost 20 months ago and nothing has happened other than having my family watch as I wake up screaming from back and leg pain and staying up all night crying. You know, my daughter has watched me go through this most of her life and I still tried to make a living for our family and protect my Union brothers and sisters at the same time.

Their reasons for denying my case are ludicrous because every time I proved to them that they were wrong, they would fabricate another reason to deny this procedure. The first time they denied my case they claimed that I didn't meet the criteria for the procedure of which my physicians clearly did through their narratives in my appeal. I proved them wrong using my physicians' narratives. Then the second time they claimed I didn't have a plan physician who stated that the procedure was medically necessary. Had they opened my appeal they would have found not one but three plan physicians who stated that it was medically necessary. Senator Kennedy and Congressman Neal had me submit a rebuttal with the physician's narratives again but I attached the page that they were on in the ConnectiCare plan booklet and circled their names. I then attached them to each physician's narrative and they replied that now that I found the plan physicians that it wasn't an issue.

Now they are stating that the consultant who apparently reviewed my records which is a violation of HIPAA since I did not sign a wavier stated that the procedure was not FDA approved. This is a third separate issue and was really heartbreaking and preposterous since the appeal was done in July of 2006 and the FDA approval was in October of 2004. I included all this in the original appeal including the "LAW!" Senator Kennedy's Office said they had enough and told me to take this to court but Atty. Bill Powell from Cong. Neal's Office stated that they were "screwing me around" and told me that he was going to have the Congressman call there personally. The Congressman knows about this case since I have spoken to him personally 3 times in the past. The last time was at Sheriff Michael Ashe's picnic which was in August. I even spoke with Governor Patrick who I supported and campaigned for just before he left the picnic. I believe this is too big a precedent setting case for the Insurance companies and nothing will happen. What's worse is the fact I can't afford this procedure.

This procedure has the ability of placing an employee back to work in as little as 6 weeks verses having your back fused which in some cases keeps an employee out of work as long as 24 months. On the average of 3 to 5 years later the employee ends up back in pain and having more discs fused because degenerative disc disease develops and continues up the spine because the spine has a natural lodical curve to it and the stress that is applied to it from the fusion procedure interrupts that curve. With the ADR procedure the spine is returned to its natural position. This assures the individual full use of their spine. This procedure is actually called nucleus arthroplasty.

In my daughter's four years of high school, there was a father and daughter's dance that I could not attend because of horrific back and leg pain. I told her that no matter what in her last year I would have the dance with her that I dreamed about as a Dad. That week came and I could hardly walk so suffice to say, she was heartbroken and so was I, not because of me but my pain.

It seems like no one is really trying to help me. Congressman Neal's office stays in contact and has processed my paperwork to no avail. I have personally spoke with Congressman Neal on 3 occasions and all he does is assures me that it will be resolved and to call his office. I call his office but his aide states OPM refuses to answer him now and there's nothing more they can do. How ludicrous! Senator Kennedy's office has been in contact and his aide Bethany Bassett told me that Senator Kennedy has taken a personal interest in my case to no avail. It's difficult for me to believe that one of the greatest and most powerful politicians of our time can't get an answer from OPM. My surprise has been Senator Kerry's response which has been none even though I was a staunch supporter of him and am a Viet Nam era disabled veteran.

You know something, if I can't get this operation I pray that I can open the door for others so that they don't have to suffer the physical pain associated with the back and prevent the peripheral pain that accompanies it that the poor family also suffers from. I found out there is an organization out there dealing with my issue which is the Arthroplasty Patient Foundation, Inc. ( direct line is 617-314-5900 ) and they had my story in their website so I know there are literally thousands out there just like me that suffer as I do. I know you can sympathize with me over this because of all the problems you see people suffer as a result of the lack of concern from the health insurance industry over issues such as these and the issues that are close to home for all of us.. You know the physical, emotional, and financial hardship that not only I suffer from but literally thousands who could benefit from this procedure.

You are my last hope! I am running out of time as indicated by my physicians' reports. All you have to do is have me tell my story or have a staffer contact me and I assure you this would be newsworthy. I know if this is brought up to these potential candidates, you will have the answer and something will be done. I implore you to please tell my story if not to help me but others like me so that some Dad or Mom will get the chance to dance with their child that I couldn't. With this special season upon us the prayers that might be offered could open the necessary doors so that people who suffer this horrific pain may again be able to lead a more productive life and be contributors of our great society.

With your help and some prayers, I know this could be a reality. Lastly it would be something if someone at least just answers me especially since I've written so many letters and the only person who hasn't gotten one has been the Pope. It would at least make me and my family feel like someone out there really cares. Thank you and may God bless you!

Sincerely,
Ronald M. Jordan, President
WMAL-APWU, AFL-CIO
Hm addr 24 Briarwood Avenue
Springfield, Ma. 01118-1312

(Edited for formatting by Harrison)

[Ron]

To all.
I need your help. God please this isn't just for me..it's for all of us. This might be the opportunity we need to publicly get this issue to the American people and make it an issue for the candidates.Please go to the website and comment. Being a Presidential website you must sign in but it doesn't mean that you are supporting him nor will you get spammed. This is our chance. Let's not blow it. God Bless
Ron

[Harrison]

Ron, thanks for sharing and posting this! Sorry for ALL the work you had to expend thus far. It's crazy what some patients must endure.

BTW: I'll be including this in my response on Mr. Edwards blog:

True Stories from Patients: Insurance Nightmares Abound
http://adrsupport.org/eve/forums/a/t...1/m/9291065952

My thanks to the many of you that contributed to this topic. Ron, let's catch up again mid week. I hope we can help!

[Harrison]

Sorry, Ron, I ran out of time today and have a few hours more work. I'll be posting to the blog soon -- I just want to do it right! Talk to you soon.

[Harrison]

OK Ron, I posted on John Edwards blog, I hope this helps!
_________________

Mr. Edwards,

As a spine patient and an advocate for the community, I find it troubling that people like Ron must go to such extremes to "negotiate" for an FDA-approved spinal procedure. If millions of people have serious and chronic spine issues, why are efforts to help people them so neglected by our government?

We are not asking for a new system or universal health care. We simply need the insurance companies to pay for a procedure that has been practiced in Europe since the 1980s, and approved now in the U.S. for more than three years.

On my global discussion board, you will see that people across America sent their stories to me. This topic was created expressly for educating the media and government about their urgent medical and financial situations. Please see this "tragedy in progress:"

True Stories from Patients: Insurance Nightmares Abound
http://adrsupport.org/eve/forums/a/t...1/m/9291065952

I really don't get it - if patients are already spending thousands of dollars annually on insurance, why do they have to mortgage their house to pay for an FDA-approved procedure? They simply want to become a healthy, whole person again and return to work, love and life.

Please embrace this issue with all your heart and mind. Many, many patients are still hoping for changes that will help them get their lives back! Please contact me if I can be a resource to you or anyone in Washington.

Thank for your time.

Richard Longland
Founder & Principal
The Arthroplasty Patient Foundation
617-314-5900

Main: www.adrsupport.org
Global Discussion: www.adrsupport.org/eve
Spine patient documentary in progress: www.jointmotion.org

[LBP]

There is another member,Stan - member name: sfmcfar, on this site who is a federal employee denied surgery by his ins company but won the appeal when he got the OPM/FEHB policy enforced. He had a Maryland UHC insurance policy. do a search under his posts you'll see it. He won his appeal back in Aug of 05 so you are not the first person to try and enforce this policy re ADR surgery!