Elaine's HMO Question to me

[Fay A.]

Elaine,

On June 1st you responded to my post on my 5th anniversary with some questions. I didn't answer you then because you and I had done some private emailing on the subject several weeks before about how I have managed to obtain the care I've received. You're response at the time was that you are a paper-phobe, which surprised me because you're a journalist. Anyway...instead of typing it all out again I'm just going to cut and paste what I sent to you previously as an answer on what I do to try to see to it that my insurance covers my medically necessary care. I didn't mention that I filed a complaint with my Federal Congressinal Representative when authorization for my first lung cancer surgery was denied and the subsequent appeal was also denied. Here goes and I hope that the information is of help to others who are facing these problems. Not all of my medical providers have been so difficult to deal with...but most of them have. I just do these things as a matter of course now.

Sent :: Message

From: Fay A.

To: Elaine

Posted: Thu May 13, 2004 4:39 am

Subject: Re: Prayers and a question

Hello, Elaine,

And I am sorry you are having to fight the HMO battle on top of everything else.

I have an HMO type of insurance. The first thing you should do is obtain copies of all of your medical records. If you do this as you go along the cost isn't so hard to deal with. I invested $60 in a combination phone/fax machine for my home. It wasn't anything fancy, just a plain paper fax with a corded phone. The one I have now also has caller ID, which I subscribe to through the telephone company. It adds about $4 more to my telephone bill. The reason I do this, Elaine, is because this machine generates a printed report showing all of the faxes I've sent and to what numbers, along with all incoming phone calls and faxes to MY number. It creates a paper trail showing contact information.

I fax letters to my physicians that contain my questions for upcoming medical appointments, asking about referrals and or the status of pending referrals, notifying the docs when I have a medical problem and they are not responding to my telephone calls for assistance. When you can document that you asked for help in writing it changes how things are handled....at least if your docs are smart.

It's important to document your requests for help (referrals for tests, to specialist care, etc.) so that when you contact your State Representative, or Congressional Representative, or the board of medical quality assurance for your state, or the HMO itself you can back up what you claim has occurred....or not occurred.

Send letters along with making the telephone calls. Keep a telephone log for each call you make to the HMO, or your medical providers:name of person you spoke with, date and time of call, subject of discussion.

One of the things I learned was that during the 4 years I was going to the docs because I was sick they were writing in my records that I should be evaluated by a specialist, but they implied that I wasn't following through on their recommendations. What they were telling me was I had a virus, or it was just a pulled muscle in my shoulder, or I had an mild allergies causing my face and neck to swell, and that I didn't need to be seen by a specialist. That's why you need copies of the Doctors records, and lab results and scan reports.

I send my requests, concerns, questions in writing via registered snail mail with return receipt requested, via email to the physicians account, and by FAX. Once you start putting things in writing, Elaine, it changes the way they have to handle you. I know you can't afford an attorney, but if you have paper ammo, there are lawyers who will take your case on a contingency basis....as well as those who will work pro bono (no cost to you).

My insurance is notorious for not paying, for denying authorization for medical care. You let me know what state you're in and which congressional district and I'll find out who you need to contact for help in compelling your HMO to do what it is supposed to do.

It's all a big pain to have to deal with this, on top of the disease. But it's a part of the world we live in now. I hope that at some point we have the kind of support network available to Lung Cancer patients that is available to AIDs patients...the legal network they have in place helped to change the way society (docs, medical insurances) handled the care of Aids patients.

Let me know if there is anything you want me to look up for you.

Best Wishes,

Fay A.

_________________

Fay A.

NSCLC Adeno W/ BAC Features

Rt. Lung Upper and lower lobe segmentectomies 6-99, 4-00

Rt anterior thorascopy 11-00

Iressa 5-02 to 1-03

Pneumonectomy Rt. Lung and all Nodes right side of chest 5-03

Carbo-Taxotere 9/03-12/03

From: Elaine

To: Fay A.

Posted: Fri May 14, 2004 10:15 am

Subject: managed care

Fay,

(First paragraph deleted as not part of the topic above F.A.)

Thanks for the info on HMOs, too. As a paper phobe though, it seems like a lot of rigamarole and outrageous that we have to be that way--that our own health care system is corrupt. I know it must be. HMO's (managed care and I use the word care ironically) have to be one of the worst things anyone dreamed up in my lifetime.

Some group of strangers or maybe just one nearsighted guy who has never had to look me in the eye making decisions ab out my care--sucks.

Good luck with demolition and the subsequent magic!!

Elaine

_________________

DX Feb 2004 NSCLC Stage IIIB/IV

inoperable: location and nodes

2nd opinion Bloch confirmed

Decided while quality of life is good won't do toxic chemo or heavy rad

Taking supplements

Main symptoms from hypertrophic pulmonary osteoarthropy, but livable.

Monitoring, worrying,wondering and looking for trials.

Stable as of April 04

Well, that's what I do. It works.

Oh, and something else: It's been brought to my attention that some feel I was "blowing my own horn" when I hit the 5 year date. I am very sorry that you feel this way. Nothing could be further from the truth. I am astounded that I made it this far, because it certainly hasn't been an easy road to roam. The point of that post was not to blow my own horn. It was to point out that as a Stage IV Lung Cancer patient I was given the option of surgery not once but twice, something that is usually not given to Stage IV patients. This happened because I was erroneously put at Stage I. I believe that part of the reason I did not die during the first two years after my diagnosis is because I had those operations. They reduced the tumor burden. I then took part in a clinical trial that held things at bay for a while longer, and killed the cancer in lymph nodes outside of the lung, also prolonging my life. I then had the third surgery as a known stage IV patient, which, based on the way I felt before and after the surgery, also kept me alive longer. I didn't have half my blood supply being shunted through a lung with multiple maligant areas, and so encased in scar from three previous chest surgeries that it just didn't move air too well anymore. The point was and is that I believe if surgery were made available to more stage IV Lung Cancer patients we would begin to see better quality of life and longer survival periods. I thought if others knew this they might be able to use it for themselves or their loved ones.

[Elaine]

Fay:

I received an email from my friend before you posted your five year anniversary and my friend never mentioned anyone specifically. She said she felt like a failure because she had no good news to report--as if she were to blame for the aggressiveness of her illness. I cant go into too much detail without giving info out that is confidential. That is why I wrote what I wrote about all of us having a different illness even though it might be called the same thing.

I never thought you were congratulating your ownself,totally for your longevity. I know you know better than that. Not everyone does, though. But you have every right to give yourself loads and loads of credit.

I didn't know until just now how you were able to get someone to do surgery, so I asked about that. I beleive as you do--no matter where the dang thing is, get as much out as possible--debulk it and then go at it if need be. I don't guess it's cost effective though or maybe it doesn't keep the chemical companies fat enough. I don't know. I started a whole thread on that a few weeks ago. I am convinced that surgery of some kind should be an option for nearly everyone.

I also don't buy the notion that screening won't help. Look at Japan's stats. They have mobile units that go around screening people and guess what----44 per cent 5 year survival accross the board--compared with our teens. Go figure. I think i remember reading that the mobile units were first used to screen for TB or was it the HBomb effects? When smoking caught on, they kept the mobile units and screened smokers, to great success, I would say.

I applaud you and everyone who ever saw a glimpse of this disease.

elaine

[Fay A.]

You're right about the Japanese...I lived there for over 5 years, and they have some of the highest incidence rates of BAC and Adenocarcinoma in the world. (Radiation exposure). They have been very aggressive in caring for their people, and it took a lot of work to get the elderly citizens to go along with the screening. They tended to view the possibiltiy of illness as something over which they should feel shame. (Now where have WE heard THAT before? )

[Elaine]

Fay

Guilt was the form of punishment used instead of the rod. Ok--I admit, I got the rod too.

One thing that struck me was that in a homogenous society like Japan, people will find something, anything, it seems to create "the other." This nation, like so many, has used race as a marker. Mental illness, I know, was something that was especially shameful in Japan.

I guess my point is: What is or is not shameful or stigmatized is extremely culturally based and deep, which is why one of the first things that LC advocates need to do is to face the stigmas head on and go about the work of chiseling them away.

As part of this culture, I, as a patient, like other patients have absorbed the "messages" that I am to blame.

Thanks to people on this board, like you Fay, I have come to learn that it is wasted energy to beat myself up over it. Can't say the thoughts go away easily, but intellectually, I know better.

Elaine