Not the Average Patient?

 
“It is a travesty that patients are refused treatments that can save their lives, or at least make their lives a little easier, because of financial considerations.”
 
 

I had just sat down at my computer. I wanted to go through the latest notes that you all had sent in before I started to write. My plan was to write about my visit tomorrow with new doctors, who have a new kind of radiation machine, called Novalis. It can focus the radiation so precisely that they can use it on the tumors in my spine without doing any harm to the surrounding tissue. At least that's the hope. Given that the alternative is to simply wait for the tumor to grow and cause my vertebra to fracture, I'm holding on tight to that hope.

And then I saw this note from Robert:

I think the problem with the blog is that it is not realistic for the average patient. Many of the treatments you receive are just not available to the average patient even with insurance. My wife once had a doctor tell her he wouldn't have discussed a treatment she had if she was on Medicare, because they wouldn't pay for it. Most cancer patients are struggling to pay for what limited options they have and can only dream of the trips and things some people use for an escape.
Hopefully the successes you have had will help let people know there are still options and the publicity will make them available to everyone.

He's right, of course. I have been very lucky. I'm being treated at one of the best hospitals in the country. My insurance has covered the procedures. I did have a couple of fights with them because they declared the Radio Frequency Ablation procedure "experimental" and refused to pay. The first time they did this I had already had the procedure. They approved it and then apparently changed their minds. After a flurry of phone calls, they agreed to pay. A couple of weeks later, we went through the same fight again, as if the first round had never happened. In the end, they agreed to pay again. These decisions are very often made by insurance company doctors who are not specialists in the procedures in question. My doctor who performed the RFA told me that once the insurance company doctor who refused to cover a cancer procedure was a gynecologist.

It is a travesty that patients are refused treatments that can save their lives, or at least make their lives a little easier, because of financial considerations. How can anyone even try to make that kind of judgment? To decide how much money should be spent to save a person's life? Like the old line goes, "Who made them God?" I won't even go into the whole issue of how much money the government wastes, and how many lives could be saved. That's just too easy.

We have to keep fighting this. I truly hope that from now on my insurance company will cover all RFA procedures. But I don't know if they will. Did they agree in my case just because I fought back? If nothing else, I think that if an insurance company denies needed coverage, it should be confronted. It's hard to get to a real person, to fight through the computer systems, but I think it's worth it. Even if they still deny coverage, at least someone should have to answer the questions, "How can you refuse to help me? How can you condemn me?" Maybe it will just make them uncomfortable for a few minutes. But that's a start.

Leroy Sievers

6:54 AM ET | 07- 4-2007 | permalink

 

Comments (Send a comment)

I know i am lucky in comparison to many people who dont have insurance coverage. however, i was faced with an interesting issue lately. a woman who has a sarcoma cancer that has been an intense researcher on treatments and the like, brought to my attention that in other countries chemo and radiation are not used as much anymore, due to up and coming vaccines and gene therapy, and blood work, and that oncologists are the
highest paid doctor in our country, not sure thats true, she went on and on, saying that chemo and radiation are horrible and we are the only country still mainly using those treatments due to the pharmaceutical companies wanting the huge money they make on the chemo drugs and radiation therapies. Apparently chemo drugs cost the companies next to nothing to make and cost us, the public, thousands. this definitely needs to change. I see on the news, people like Farrah Fawcett going to Germany for her cancer treatment, and many others. why is that? could it be we have a blind eye to what is going on now?
in the meantime, i'm in treatment, receiving chemotherapy drugs, then radiation treatment, because i cant afford to go to Germany and pay thousands of dollars. again, it goes back to, how much is your life worth?
how much money?
thanks for this topic today leroy
jenn from Maine

Sent by Jenn | 7:14 AM ET | 07-04-2007

I am Stage IIIb with melanoma. I have had the approved treatments for my 5 recurrences- chemo, radiation and a vaccine. Unfortunately I continued to have recurrences after each of these treatments.

I now take a drug that has had some good success in preventing recurrences BUT it isn't yet approved by the FDA for melanoma. The annual cost is $20,000. Each time my oncologist calls in another prescription for another 6 months' supply, it is rejected. Fortunately there is an Appeals Committee. So my oncologist and I prepare the information detailing my history and send it to this committee. So far they have approved our appeal. (I don't qualify for clinical trials because I have also had renal cell carcinoma with left kidney removed. Two types of cancer seem to exclude one from any trial so I have been told)

My message is that each patient should be prepared to fight with the insurance company to get the treatment they need. As difficult and unpleasant as this is, it is a fact of life in the cancerworld. Be persistent, be your own advocate, escalate to next level when the answer is "no" 'cause the person you are dealing with has been trained to say "no" and cannot make any decision on your behalf, appeal to state insurance commissioner for help, etc. While all of this is time consuming and frustrating, remember that you are the beneficiary if your appeal is successful.

As Leroy says, we shouldn't have to fight for our care BUT we do and we MUST. Navigating the insurance maze to receive coverage for our treatments is not easy but the alternatives are not acceptable - don't receive the treatment or out-of-pocket payment which with the cost of cancer drugs and treatments can lead to financial ruin.

For those of you who are about to enter the Medicare world of healthcare, you should checkout the medicare drug program because many of the cancer drugs are NOT covered. I carry a secondary drug policy for my cancer drug coverage.

Great topic and an important one.

Blessings and prayers as always.

Sent by Al Cato | 7:27 AM ET | 07-04-2007

I have so many comments on this topic but I'm far too upset about it to type it out. I am going through this now. I am self employed and pay $400 a month for Blue Cross Blue Shield. I give up other goodies in life so I can pay for health insurance like a good citizen. Yet, because it is a basic plan I have met limits on diagnostics and chemo treatments. My last CT was questionable and I will have a PET on Monday. If the PET shows we did not get the beast with RCHOP and radiation I will be having a stem cell transplant. None of this will be covered so I wonder how they will schedule it for me. So when I survive that I will spend the rest of my days trying to battle the bill collectors, pay for what I can, hopefully have a place to live and somehow try to heal and work. This seems more daunting to me than the cancer. What is the cost of survival? I am 37...what does this mean for the rest of my life? Nobody should have to go through this. I've paid for insurance and still I get screwed. I'm full of anger and hate at the whole system. If it weren't for my mother covering all my home bills and such I would have lost my house months ago.

I'm babbling. I'm so upset that I cannot do this post justice with any comment. Someone asked me if I was going to see the new movie "Sicko". I said I didn't need to, I'm living it.

I agree with what you said and how the insurance company should be confronted. Sometimes we are too sick to do it ourselves so we need an advocate. Maybe I should just threaten them with bodily harm and get myself arrested and thrown in jail so I will have a roof over my head, 3 squares and free medical service. Bastards.

Sent by Lori Levin | 7:55 AM ET | 07-04-2007

Don't forget that you are now a public figure! I'm sure you'd never name the insurance company, but that probably counts for something in their willingness to pay.

The chemo mix my husband gets is a tad "off label" for his sort of cancer and so the doc is careful to list a diagnosis that is a direct match and not slantwise. That said, there is no certified treatment for his sort of cancer, so it's urgent that he get this (which is working to keep it at bay at least).

We already know that some of the palliative medicines (advertised so nicely on TV) are both expensive and not covered. And, yeah, you get to worry about whether your doc avoids mentioning options that your insurance just won't cover. I keep wishing there were a medical equivalent of lawyers to protect our rights/needs.

Sent by Teri | 8:37 AM ET | 07-04-2007

Leroy, I'm so glad you're getting into that crucial subject of availability of care. Part of the terrible survival statistics for some cancers has to be because those who are uninsured, underinsured, or too sick to fight alone just can't get the procedures that might save them. I was the caregiver and insurance warrior for my husband and now do the same thing for my mother. Both were well covered by Blue Cross. But if they hadn't had a determined family member to deal with the bills, statements, and mistakes, how could a sick and frightened person manage? It was almost overwhelming for me and I'm healthy.
One of the things that I learned was to find a good case manager. I had been advised to ask for one when Shannon called and introduced herself as my husband's case manager. She's wonderful. She's sympathetic and feels like a friend. She'll say, "well we should have covered that. Let me check on it." Then she'll call back and explain why they didn't or tell me that I was right and she's resubmitting it. Having the consistency of one person to deal with that I trust has meant so much to me. I know how to reach her on the phone or by e-mail and am able to avoid that frustrating chain of "press 2 if you..., press 5 if you..." calling. My mother's cancer treatments began the week after my husband died. I asked for Shannon and was able to get her to take Mother's case too.
I don't know if other insurance companies have case managers. But I would advise people to ask. I'm sure they aren't all as wonderful as Shannon, but just having the same person to talk to at the company would be helpful.
The terrible fact that so many of us are uninsured just has to be fixed. My adult daughters are uninsured. I can't imagine how I'd cope with not being able to get a life saving procedure for them. We have to put this very high in our priorities as we go to the polls in the next election. We are the ones who have to push for this. We have to let our leaders know that it is time to fix the system.

Sent by Laura | 8:41 AM ET | 07-04-2007

Hi Leroy!
your post today is perfect for the patients stuggling with the avalanche of paperwork on top of the realities of the full time job of dealing with this challenge. I am an RN and my husband has stage 4 colon cancer as well. I've seen how demoralizing it is to deal with insurance and all their games. I guess that leads me to ponder this diversion. I loved your comment that there should be a lane for cancer patients when driving etc. Why not Jeopardy/ wheel of fortune/ Millionaire offer "CANCER WEEK" where patients -family could play to win badly needed funds plus give them a thrill of all the hoopla around the shows they all watch while undergoing treatment etc. I know it's taboo to propose such a thing -but there's make a wish for kids-why not take the buzz kill out of cancer -for adults too? Only a thought-but who knows-you've touched so many-maybe a producer will come up with some ideas. Meanwhile keep up the good fight Leroy-we are all pulling for you. It stinks being made president of a club you didn't want to join. thanks again-Robbie

Sent by Robbie Cripe | 9:01 AM ET | 07-04-2007

I had a so-called insurance and still had to declare bankruptcy after all the chemo, pills, MRIs and 5-minute neurosurgeon visits as well as injections to revive my red blood count. I felt totally humiliated to be in the richest country on the planet and have to endure yet another heartbreak! As if having Cancer isn't enough....so now I have to revive my credit as well as my health. If my cancer comes back, I guess I'll just have to die from it this time.....

I still think your blog is great for the emotional side of things though! Keep up the good work and good luck!

Sent by Tammy | 9:20 AM ET | 07-04-2007

Dear Leroy (and others): Before I retired, I worked with/for health insurance comapnies and I tried to help my parents & clients with their claims. Everything today is processed by CODES. Many times it's GIGO from the hospitals & doctors that mess up the claims, other times the insurance company or government is not up-to-date. It is rare that even a nurse, let alone a doctor, ever sees the claim leaving the hospital or doctor - and certainly even more rare such a specialist sees the claim at the insurance or government office. It's all about CODES.

Sent by George Hofmann, RHU | 9:28 AM ET | 07-04-2007

I too hate the notion that money buys health care. All the drug companies really do have a hold on our health care system and we are the underwriters of it. Death is one to a customer and therefore no residuals. So much for the politics of disease.

Sent by Pat | 9:38 AM ET | 07-04-2007

WOW, what a great topic today. My fiance has medicare. After he was diagnosed with his stage 4 lung cancer, we started looking at some well known clinics for his treatment. He was told by one of the well known clinics that they could see him in three months. If he had supplemental insurance, they would have taken him that same week. How sad.. we did not have 3 months to wait. He is being treated by a great clinic now and as I said yesterday he is in remission. My concern has always been, what more would they do if he had the sup. ins.? Would he be getting drugs to keep his cancer from growing while he is in remission? I do know they have two floors at this clinic...one for the people with insurance and one for those with medicare or nothing at all...how sad...my own insurance, I have an $800 deductible and then I pay 30% of all costs. I am single mom... I don't have that kind of money...It is all sooo wrong!

Sent by Laurie | 10:00 AM ET | 07-04-2007

I am also extremely lucky to have insurance coverage for my $40,000/year cancer medication. I can't imagine what it is like for people who have to fight with insurance companies on a monthly basis to get the medicine that keeps them alive. The constant stress must be overwhelming.

I do think that those of us who are fortunate to have access to new procedures are paving the way for better health care for all cancer patients. Knowledge is power. As more and more people become aware of treatments they will start requesting and demanding them. It won't happen overnight but I think we have already seen great progress in cancer treatment and I am hopeful that it will continue to improve in the future.

I am so grateful to you for writing the cancer blog. It makes me feel like I'm not alone. You have a wonderful way with words - I can't believe how many times your thoughts resonate with feelings or experiences I've had.

I wish you the best and I'm pulling for you to stay healthy. We all need you.

Sent by Marianne Malinowski | 10:03 AM ET | 07-04-2007

I am tired of fighting my insurance company for every little procedure and treatment. My husband and I joke that they hope the patient will die by the time the appeals are done.
I was off systemic treatment for almost six months trying to get a new drug for treatment of my kidney cancer. They delayed my cyberknife approval for a spine met for three months. I needed embolization on my liver and they denied it three times. I am still fighting this one. They told me that they are not denying the treatment, just the payment!
I contacted my congressman and the local newspaper to try and get help. It's not frustrating enough dealing with having cancer, I have to deal with fighting for procedures and treatment that should be covered. They should be ashamed.
Another issue that hasn't been mentioned is the one of a lifetime cap on coverage. Cancer patients can exceed it in a very short time due to the astronomical costs of treatments and drugs. Unfortunately, it can impact the decision of deciding to try a newer, better more expensive treatment or drug.
This should not be.
I did see Sicko and urge everyone to see it. Then get your friends and family to see it and discuss what we can do. We need a revolution in this country!!

Sent by Ronni Ihm | 10:05 AM ET | 07-04-2007

Your topic today reminds me of when my husband asked me for a divorce in his late stage cancer because he saw the escalating bills. THIS SHOULD NOT HAPPEN.

Sent by anonymous | 10:05 AM ET | 07-04-2007

It is a bitter pill indeed to know I have less than an optimum survival rate because of my low income.It is one of the nasty little facts I keep from my children, family and friends.

But let's get real. I have never been a person with "disposable" income.Now that I have stage 4 cancer why should I expect that the world will jump up and change ? It's really just the same old self serving dog- eat- dog money grubbing American soceity that I've lived in all my life.

Thankfully I know I have people around me that love and care for me. Thankfully, I have things in my life that can still give me joy. I feel it isn't helpful to my quality of life to waste time and energy wishing that things had been different. Afterall, once we get a cancer diagnosis - don't we all wish it had been different?

Still; those of you that can fight the injustice, I cheer you on. Those of you that have found the tools and keys to open doors, thank you for passing on the information. To all of us, every one, I wish us peace. Penny

Sent by Penny Hoblin | 10:13 AM ET | 07-04-2007

My husband was diagnosed with melanoma in 1990. Six years later he was diagnosed with a tumor in his lung. We were fortunate to not have an HMO as our primary insurance because they would have sent us to the state medical school that didn't have a melonoma specialist. He was able to go out of state to MD Anderson and receive the latest most aggressive treatments for his cancer. After his death it would have been much cheaper for me to have signed up our two children and myself on an HMO through my job. I prefer to have some control over which doctors I see.

Sent by Joy Beal Meriwether | 10:16 AM ET | 07-04-2007

Leroy et al

Here is the cold hard facts...

Currently approximately 560,000 people die each year from this disease (in the USA alone not to mention in the world).... and it is estimated that a full 30% of those who die each year die needlessly!! If we ONLY applied what we ALREADY know about screening and treating this disease approximately 200,000 of those people would SURVIVE!!!

THAT IS A TRAVESTY!!!

Access to reasonable screening and ultimately treatment should be universal!!

Our medical system in this country is run by INSURANCE companies and actuarial charts and decisions made by people who never look a patient in the eye!!

Stories such as Tammy's are all too common and disgraceful!! How can someone PAY through the nose for health insurance and then wind up FORCED to declare bankruptcy??? Isn't that why we pay the darned insurance in the first place???

I am a small business owner... and I CHOKE every month when I have to pay those premiums!! But how could I not do that to help my trusted employees to try and protect themselves and their families???

Everyone MUST be prepared to fight tooth and nail with their insurance companies.. do NOT accept "no" as an answer!!!

I was EXTREMELY fortunate.. when I went through all my treatments my insurance agent came to my house periodically and we went through ALL the bills and what his company offered to pay and he refused to accept most of it on my behalf.. he resubmitted sooo much stuff and ultimately they paid!!!

You MUST advocate for yourself... both medically and with your insurer!!

And those who can't afford insurance... I can not imagine how they must feel and the living hell they are put through.... never mind doing the best they can to simply survive.. they are trod upon by both the disease AND the financial implications!!!

EVERYONE should join in and FIGHT the system.. there are several GREAT organizations out there doing advocacy to try and make things better for ALL of us...

http://www.livestrong.org/jointhearmy

http://www.canceradvocacynow.org

Make you voice HEARD!!!!

Sent by Ron Bye (NH) | 10:23 AM ET | 07-04-2007

The doctors have the AMA, the drug companies and the insurance companies have their lobbies. The patients don't have anyone but ourselves to advocate for us. In order to make an impact, we and our families who have been through this wringer need to organize and make our voices heard. It is not enough to curse the darkness, we need to light enough candles to be seen in the darkness, and it is vast. Many of us will not be around to carry on the fight and our poor families might be too beaten down by the process, but it has to start somewhere. I don't know how or where, but something has to give.

I have been very fortunate in that I have very good insurance and an HR friend who takes on the individual battles for/with me. But it is the system that needs to change.

At one point in my life our family was without insurance. My mother had died of breast cancer, so I was trying to get mammograms yearly. (And it wasn't breast cancer I did end up with, but pancreatic. Ironic but off the point.) I found a state program that paid for low-income women to receive pap and mammograms yearly. I did this for a few years and then started thinking about it. On my next visit I asked the gynecologist what would happen if they actually found something. He sort of stammered and was mostly silent. That is when I figured out that if I did have cancer without insurance, that I was basically out of luck. I make the decision at the time that if I was diagnosed that I would not treat it because of the expense. It just didn't make economical sense. My friends thought I was crazy and I'm glad I didn't have to make that choice, but that people in the richest nation in the world are faced with such devil-and-the-deep-blue-sea choice is unconscionable.

Sent by Stephanie Dornbrook | 10:31 AM ET | 07-04-2007

My sister is one of those people who answer the phone at the insurance company. She listens to people complain that some things are covered at 80%. Her employer provides insurance for her that covers 60% for her.

Sent by Irene | 10:31 AM ET | 07-04-2007

Thank you for addressing this, Leroy. I am a young cancer survivor and spent the last year of my masters education working in an oncology clinic. It is disgusting what the insurance companies get away with. I have seen many people denied treatment, treatment that could have saved their lives. My wish is that the rest of the country starts getting angry and we begin to do something against these insurance companies. Thank you for everything.

Sent by Liz | 10:32 AM ET | 07-04-2007

We joke (ha ha...) that my new part-time job, now that I can no longer work, is dealing with the insurance company. My husband and I are both self employed, and pay $500 a month for an "okay" health insurance policy for us and our son. Not cheap. And it's no cadillac policy either. And when I was diagnosed with a nasty brain tumor, one of our first thoughts was hoping our insurance would cover it.

And I have to say we've been amazed at some things and befuddled at others.

I sit here looking at my monthly chemo/Avastin bill from the hospital -- it's $48,000. That's for an outpatient infusion twice a month! And God bless them, my insurance company is paying for it, even though this drug combo is being prescribed off-line as it is not FDA-approved for brain tumors. Recently, we anxiously asked my neuro-oncologist if private insurance companies ever "tire" of paying these exorbitant prices and suddenly quit? He said no, only Medicaid did that. Hmm.

But I am amazed at the intense tangle the insurance company can get itself in over a $27 lab charge. George is right -- it's often over a simple code that the lab sticks in and then the insurance company's computer spits out. I've seriously spend HOURS out of several DAYS on the phones trying to get a code removed, or for at the least A to talk with B. It is a part-time job and I, too, wonder how people who are sicker than I am do it.

I completely agree with Laura about getting a case manager. Unfortunately, I've gone through about five case managers in one year -- it must be a horrible job for them as they don't seem to hang around that long, and now my insurance company has decided to outsource that piece of its business. Fortunately I've found kind, reasonably helpful people there, too.

I have to share the story of one sublime victory. When I started getting radiation and oral chemo, my radiation oncologist told me to get a CBC every week. "Just pick someplace," he said. It was at the very beginning of this journey (more like Mr. Toad's Wild Ride), so I picked the biggest lab company in our state/region, a name you'd all recognize, ASSUMING (my bad) they'd be covered by my plan. Six weeks later, and over $1,000 in bills later (nothing compared to the Avastin, but still...), my insurance company says no, we won't pay these as the lab is out of network. But because I'd developed such a great relationship with my case manager, out of the blue one day as we were going over ALL the bills together on the phone, she said, "I'll just see if I can take care of this lab bill." Bless her sweet, loving heart, she somehow ran the bill through as in-network and the whole darn thing got paid. Didn't know they could do that, did you?

Insurance Company - 10 million
Jordis - 1

But what a victory it was. Specifically because this kind of thing NEVER seems to happen in real life.

So I take the best notes I can EVERY time I talk to ANYONE. I follow up on every bill and every line on those nasty EOBs. And I've talked to a whole lot of people about stuff I never thought I should ever have to be concerned about, although ultimately it's my own care. Our system is completely dysfunctional.

Sent by Jordis | 10:36 AM ET | 07-04-2007

Karen..........I am deeply sorry for your loss. My prayers are with you.

Stephanie...........hang in there !

Sent by sasha | 10:39 AM ET | 07-04-2007

Hi Leroy and All

How ironic that the injustice of the health insurance, drug and medical technology pricing and availability nonsystem should be the topic on this of all days!

Like Leroy, I am among the fortunate in this respect. Over the last 8 months my family has paid around $9,500 for my medical insurance and deductibles for what a estimate to be $90,000 plus in retail billable care. We???re fortunate to be able afford this, though many can???t. That???s why I???m still alive and writing with no detectable tumor. My cancer is almost inevitable deadly within a few months or at best, years.

But as regular readers know, I spend perhaps too much of my time thinking, being angry and praying about the situations of those of us (and others) who are paying with their lives , time and emotions dealing with the inhumanity of the American health industry and the American approach to spending on international health and well-being as opposed to international war, destruction and corruption.

Fighting bad insurance company decisions and pharmaceutical/medical technology pricing structures on an individual basis (for those of us fortunate enough to have insurance) is important. Knowledgeable and energetic individual advocates both outside and inside the system are important as well.

But these are not enough.

I believe cancer survivors and others in similar situations ??? and there are many could do a lot more on an organized basis. Some of us are good at advocating and fund-raising for research on our individual diseases. That???s both safe and encouraged by the medical corporate world.

It???s time, I think to go beyond this, as I???ve said before. In an organized way, some of us who have the energy could:

Ask all relevant political candidates and major political web sites to make a major issue of health insurance and medical car costs and practices.

To the extent that this is not done already, civilly hold corporate feet to the fire on major cancer walks runs and marathons (dream on!)

Share our own experiences, positive and negative at public forums and, where invited, medical professional meetings.

Find out and share lists of which of our existing organized groups are engaged in this kind of advocacy. Actively encourage others, up to and including giants like the American Cancer Society to become advocate in these ways as well.

I think we would need to be civil but assertive in this. I have heard of cancer groups being disruptive and threatening, which is usually both morally wrong and strategically counterproductive.

It???s also important I believe to be mindful of those who are suffering, often en masse from deadly diseases and threats around the world. Our problems are tough, often potentially deadly and major sources of unnecessary anger, frustration and time-loss. But they are not the only problems.

I don???t know how many people this blog reaches. I do know by now who the regular correspondents are. We could form a part of the nucleus of a group that could do this work on a regular basis, given the energy. I say a part both because our energy is limited and these issues go way beyond cancer. I would enjoy responses at johnshippee@hotmail.com. Thanks for if reading this morning???s rant and happy 4th!

Vaya con Dios

John Shippee
Atlanta, Georgia


Sent by John Shippee | 10:50 AM ET | 07-04-2007

I look forward to your blogs, Leroy, as you so often hit right on the mark for something I'm experiencing. I know that having insurance is a blessing - we've reached $3 million in billings, so there is no way we could handle this without insurance and "PPO's contracted fee allowances", but dealing with the aftermath of paperwork is daunting. While my husband was critically ill the first 8 months from his MM diagnosis, I just tossed all of the EOBs, billings and statements in a box by the fireplace - just didn't have it in me to deal with it all. When he reached remission and I started digging through the massive pile I could not imagine doing this if I was the patient. Arguing with bill collectors who threaten to take your home for a bill they never even submitted to the insurance company, having to point out specific information in my benefit plan to my insurer so they will cover, having to explain the same thing to the same person over and over and over ... it's very frustrating. We're older and really don't care if they threaten to ruin our credit - but it's unfair to the younger folks going through all of this. If they are lucky enough to get a remission, they shouldn't have to spend a moment worrying about having to declare medical bankruptcy. Something is very wrong with our system.

Sent by Dianne West | 10:54 AM ET | 07-04-2007

Dear Leroy/All

My husband has pulmonary metastases from esophageal cancer. He has been on chemotherapy since 3/06. Aside from the co-payments I have been fortunate, up until recently.

Three months ago my husband's oncologist decided that in addition to the chemo (by infusion every three weeks} he wanted to start him on oral cheomtherapy. He has to take eight pills on a daily basis (4 in the morning and 4 in the evening) He does this for a two week cycle then takes a week off. My insurance company will not cover the cost of the medication. Maybe I am ignorant, but I cannot understand why they will pay for the chemo by infusion and not the oral chemo. I asked a social worker to help me, but I was told that my monthly income was too high. So, I am now paying $2,700 per month, almost like a second mortgage.

In closing I would just like to say that I would pay anything, give up my home, cars, all my assets if my husband could be cured, but this is not the case. I agree with Leroy, its a "travesty" to cancer patients. We don't need the added pressure.

Sorry ...............just needed to vent and today's blog was the perfect time. Prays to all.

Sent by sasha | 10:56 AM ET | 07-04-2007

Add to the money tangle, that many people are forced to work full time during the most grueling of treatments because there are no other options. I just finished a round of IMRT for bone tumors, and shared the waiting room with many who, however exhausted they were, would receive treatment, then go straight to work. What a system.

Sent by Michele | 10:59 AM ET | 07-04-2007

Hi Leroy,

Boy this is a hot topic. I am in a medical HMO. They say to call customer service with questions. When I have a question I can assure you no one they call a customer service representative is capable of answering it. They are all trained to say "if it is medically necessary it will be covered". You can tell they have no idea what you asking about.

Yes, codes run the system. My GI doctor wants to put me in the hospital to put me on Sandostatin and regulate the dose he thinks I will need. He requested this months ago. The person (not a doctor) who decides whether or not I can have this treatment wants the "codes" for the procedure. My doctor said he keeps sending them information and nothing has happened. I am not sure I want to take this drug so I have just let them play it out.

As for case managers, mine is an idiot and after filing a complaint about her, she is still my case manager. She was going to send me to a vascular surgeon at a hospital in Los Angeles for a second opinion on chemotherapy for my rare small bowel cancer. I "googled" the doctor and found he had participated in a stolen liver transplant surgery a year or so prior. I finally did get sent to UCLA for a second opinion and then paid myself to see Dr. Lenz at USC.

My oncologist said he won't fight with the HMOs anymore because they will cancel his contract. So much for help from that side. He said he was glad I was fighting them....well duh!!!

When open enrollment comes up again I am definitely looking into regular Medicare with a supplemental policy.

I was not thrilled when I saw President Bush on TV a month or so ago saying that people just need to plan on paying more for their own medical care. I wonder how much he pays for his care???
I was paying almost $500 a visit co-payment for my chemo treatments and I know that is nothing compared to what a lot of people have paid.

Our health care system and how to pay for care needs a major overhaul. The thought of a government run system makes my blood run cold! Having seen how the VA system works over a long period of years it scares the H*&l out of me.

I am also sick of hearing doctors say "it is your insurance" or "it is your HMO". It is my opinion that doctors could have stopped the HMO movement but did not. HMOs can not operate if they have no doctors in their systems.

And then there is an issue of incompetent doctors. My daughter is fighting advanced stage uterine cancer because a stupid doctor did not listen to her and would not discuss removing her uterus several years ago. Cheryl feels guilty about not pursuing it with another doctor. Her current radiation oncologist told her it is not her fault.

Well, enough ranting for today. I hope you all have a great Fourth of July. This is a great country. I just hope some great minds figure out how to handle these problems with health care.

Charlotte in Temecula

Sent by Charlotte Kewish | 11:14 AM ET | 07-04-2007

Leroy,

On top of having cancer, a patient should not have to be his/her own advocate. It is cheaper to hire a lawyer to do the leaning than it is to pay for everything yourself or possibly not get treatment. If you think your insurance company is saving money on your misfortune, consult your attorney.

Making your situation public doesn't hurt, either. Insurance companies don't like bad publicity.

Sent by Diana Kitch | 11:31 AM ET | 07-04-2007

The day residency ended last week, I went to go watch SICKO, and I had to leave an hour into the documentary, because I felt ill...literally sick to my stomach... when you're a resident you are not 'seeing' the behind the scenes 'do they have insurance or not' disucssion, you just see the patient, treat, and see the next patient..

The learning curve on the 'business' of medicine will be dealt with when I start...not looking forward to it... but I hope that things work out for the best.

You are fortunate to be getting the kind of care that you are getting, and I hope that you are able to get the necessary treatment/s.

I was sent this video, and wanted to share.

http://youtube.com/watch?v=54UGYWqanek

That is Novalis :) Leroy...

Be well...
Krupali

Sent by Krupali Tejura MD | 11:43 AM ET | 07-04-2007

Money, insurance, and life saving procedures - each dependent on the other? What a world we live and die in! It works BUT Not yet FDA approved for your cancer - have you heard that one? I don't remember getting an FDA approval to get this terminal desease!

Big brother wouldn't want to give us something that may kill us - even if it might save us or give us more time.

We have to try the cheaper stuff first (Medicare says) even thought we KNOW the more expensive meds really work better --- to save money! Saving taxpayers money never seemed as important before I got cancer. But Washington is all about re-elections and votes and I suppose that our votes don't count (in the long run). The 2,4,and 6 year campaigne cycles do eliminate most of us as a voting block to be concerned about!! We fight for days, weeks, and hope for months. Each day is a win.

Didn't mean to vent !! This blog has been a great positive reading for me daily. But who in government votes for me? or for you?

Sent by Richard Davis | 11:52 AM ET | 07-04-2007

I remember sitting with mom in the waiting room for her "nth" CT. There was an older gentleman on the other side of the room, obviously exhausted, leaning his head and his arms upon his walker. He was alone. I remember wondering how he got there. Did a bus drop him off from the nursing home? Wasn't anybody with him? When the nurse called his name he couldn't quite stand. She asked him if he'd rather wait and do the CT another time. He told her it wouldn't make any difference, he'd still feel like hell, and, anyway, he didn't have much time. The nurse, looking uncomfortable, rushed to fetch a wheelchair and off they went. I remember feeling such sorrow for the fact that this man didn't have somebody with him; a daughter, a son, a sibling, a friend, an advocate, who would look out for him at such a vulnerable time in his life. My mom, who was dealing with IV lung cancer, saw it the way I did. When we left the hospital that day she told me how blessed she was. I understood. I wish there was a system in place, rather like hospice, I guess, where caring advocates would be available for those who so desperately need them. An advocate to help them fight their insurance company's denials and help them face their "nth" CT. Wouldn't that be grand?

Sent by Karen Laven | 12:07 PM ET | 07-04-2007

Leroy,
THANK YOU, THANK YOU, for bringing up this issue in your blog. I wrote to you a few days back about the same issue. My husband has stage 4 colon cancer and was scheduled for chemoembolization and the insurance company denied it. We are in our last appeal. I don't understand how insurance companies can deny patients that have cancer. These patients should be able to try EVERYTHING. I can understand why they have their policies because sometimes people take advantage of insurance. An example such as plastic surgery because someone doesn't like their nose etc. But this is not the case with a cancer patient. This is their life. Shouldn't a person have the right to fight and try everything. It's not like they enjoy going through all those procedures. They are doing it so they can stay ALIVE. I believe that when you are dealing with cancer everyone is different. I believe that is why a cure is so hard to find. The insurance company quoted that the chemoembolization is not a medical necessity. There is no proof of improvement, but went on to say that 40% showed shrinkage in their tumors. Isn't that worth a try. What works for one may not work for another. We need to all get together and fight this. That is why I wrote to you a few days back. I know you are a producer and did that special on the Discovery channel with Ted Koppel which was great.
Can you please do a follow up special on this issue. We need to get this out and I don't fully know how to go about doing this. You have helped so many by sharing your story. This blog is a place to go to where others understand. I feel bad asking you when I know how much you have going on with your own fight, but we need to get this out and get this changed. Insurance company's can't keep doing this. Please, if there is anything you can do I am willing to help in anyway. I just don't know how to go about it.
Aurella

Sent by Aurella Rocchi | 12:07 PM ET | 07-04-2007

What a great topic for Independence Day!

Thank you Leroy, for opening this canof worms. My Non Hodkins Lymphoma (stage 4) and prostate cancer (stage 1) were treated by my HMO with NO PROBLEMS when it came to bills. I do not have drug insurance, however, and for that I wonder why my HMO did not try to set me up with that when I purchased an indivdual policy (still have it) about 15 years ago?

Until I got the cancer diagnosis, costs were not an issue. As everyone who lives with cancer knows, the drug bill can really add up fast. There are drugs I could not take becuase of the high price. Luckily, I survived without them. Next time, who knows?

Another issue is that needs to be dicsussed is that of portablitity of insurance issued by HMO's. If I leave their "area of coverage", I must give up my coverage. Yet I have been told repeatedly by many insurance ocmpanies that I am "uninsurable" because of my illnesses. So my moves are limited to areas that are within driving distance of my HMO!

On this Indepenence Day 2007 I ask, "What does living in a "Free" Country" mean when our mobility is limited by our abliity to obtain health care?

I recommend all of us take our family and friends to go see "Sicko", the new movie by Michael Moore. We are not alone in this regard.

Holding us all in the Healing LIght,

Sent by Free Polazzo | 12:14 PM ET | 07-04-2007

Boy Leroy, you have sure taken your finger out of the hole in the dyke about the matter of our having to try to pay to stay alive! Yet, is it right for us to expect our governments and companies to pay for our lives?
Of course all of us want to live, no matter what the cost in dollars and painful treatments. But why is this such a mess? Why do we give treatments FREE to some, while others go wanting? Doesn't it still come down to GREED & accumulating wealth? How do we reach a point in Society where Food, Health & Housing are a person's birth right?
I know this may sound ridiculous but there should be enough on this Earth to spread around where everyone can live, work, love, and live in a comparative & reasonable style which will fit them individually. Guess I am talking about a utopia of sorts, which can never be.
However Drugs, Doctors, Hospitals, etc, have become Pirana's which are causing people without means to want to die and have peace.
Leroy, you have a great following. Maybe together we can begin a movement in the right direction.

Sent by J.C.R. | 12:19 PM ET | 07-04-2007

Robert and you are right, the average patient does not get the same care as someone being treated at a better hospital or has insurance. I have witness first hand when a patient is sent home to die because she has used up her insurance and chemo was no longer available to her. When you are in the chemo room you see the same people each time and when one does not show up, or leaves after seeing the oncologist without treatment. It means treatment is no longer helping or their insurance is used up. Each time it is sad seeing them leave knowing you won't see them again and what their fate is.

Sent by Miriam | 12:21 PM ET | 07-04-2007

I have just read the story about the man whose wife has medicare, and is unable to recieve treatment. My heart is broken by this. My fear is that our elected politicans will bring in universal health care, and none of us will recieve treatment. Just take a look at our VA system, goverment run heatlth care. My brother in law needs a lung transplant, and as long as he is in the VA system, he will not even be evaluated for the surgery. I have private health insurance, and pay dearly for this. But I have cancer, and I want to live. It may be selfish, but if I was a canidate for raf, I want the chance to have it and live. Every day I wonder if my cancer is going to return, and will I be able to get treatment.

Thank you,
Susan Flynn

Sent by susan flynn | 12:24 PM ET | 07-04-2007

While I can understand the comments of the person you quoted, I must say I get a lot of comfort out of reading your blog every day. Life is not fair, as we all know, but we can come together to try and make it easier on each other. If not financially, then emotionally, which is as important.
I was diagnosed with stage 4 colon cancer last year, given a crappy prognosis and am still here fighting (the disease, the insurance company and the pharmacy company).
My daughter made a stupid choice early last year and now she is in prison until 2010 in another state. We are both torn apart because we can't be there physically for each other, but our emails give us comfort and I have been sharing your blogs with her because you express my own feelings so eloquently. She greatly appreciates them even though she is scared to death for me (and herself).
Your blog is a great service and though I am sorry for the circumstances that brought you to us, I am very thankful for them as well.
God bless.

Sent by Ann | 12:42 PM ET | 07-04-2007

Leroy,
I hope this email finds you well. Good luck, tomorrow with the new doctors. I am sure all will be interested in what you find out on your visit. I am approaching my first, of many I hope, of post treatments next week. My progress towards recovery has been great so far, so my visits have been limited, approximately once every 3months. If all is clear, I'll be down to once or twice a year.
One getting my CT/PET scan, it didn't take long for the beaurocratic b.s. to start back up. My surgeon belongs to a different hospital consortium than my oconologist. Within the trenches, everyone is very helpful, its in the upper ranks that things grind to a halt. They really need to streamline things and make information accessible to all, regardless of hospital group or whether you are with or without the proper insurance company. Bottom line, we are people trying to survive, to get on with life, as you stated earlier. The "system" needs to loosen the grasp and break out of the glazed look that patients are not clinical statistics or fodder, but living, breathing, thinking and scared people that didn't ask to be put here; but are doing everything can to get through the day.
Enough of the tirade, for today. I wish you the best. Your articles shed much needed light on all aspects of this hideous disease and the treatment of it. I enjoy your insight and thought process. It is comforting to know that there is almost a collective thought process amongst all concerned and involved with this disease. It is nice to know that what you feel, others feel, and that we are not alone.
Stay safe, stay strong,
Lance

Sent by Lance Carlson | 12:58 PM ET | 07-04-2007

My insurance has been good to pay, at least for most things. What I ran into, after having a lumpectomy (IDC, ER- PR- Her2 positive), chemo and radiation, was that the one "drug" that will extend my life, was out of my reach, financially. Even with the insurance paying their part, the out of pocket expense was beyond what we could afford.
I was left thinking, "I've come this far, and now I can't get the 1 drug that may save my life?"
Well, thanks to a compassionate Oncologist, who waived the co-pay, I am able to get the infusion.

Sent by Brenda | 1:02 PM ET | 07-04-2007

Leroy - I appreciate reading your thoughts via this blog every morning so thank you for doing it. (I haven't had a chance to see your TV documentary because I couldn't find information about when it aired up here in Canada -- any info you have would be appreciated)....in the meantime with respect to your latest blog and the subject of insurance coverage, a question for you: Do you think the fact that you are part of the American media plays any role in your insurance company being so willing to approve most of your treatments as compared to the treatments that are approved for other Americans who have insurance?
At 44 years of age, with a young family in tow, I was diagnosed with a recurring form of non-Hodgkins (NHL), stage 4, transformed. I underwent chemo and am currently enjoying a wonderful period of remission. I'm now involved in a clinical trial in an attempt to extend remission. I am Canadian. I paid nothing for treatment because I am fortunate enough to live in a country whose citizens firmly believe in universal healthcare. When outsiders look to our country's system, some may refer to the concept of universal healthcare as 'socialism'; however, it is just 'humanitarianism' in its most basic form.
Two evenings ago, we took our sons to see Michael Moore's new movie, Sicko. Recognizing that Michael Moore can be a bit over the top and formulaic, the MESSAGE in his new movie is still very valid. There are a lot of citizens in the world's richest country whose cases are being manipulated so that insurance companies don't have to pay out. The U.S. also has a large number of its citizens who have no health care insurance at all and this is a real tragedy.
We absolutely insisted that our two sons accompany us to the movie Sicko rather than going off on their own to see Oceans 13. They need to appreciate what universal healthcare has meant and will continue to mean for our entire family and after seeing Sicko, we think they both "got it". Part of living through the cancer experience is being forced to reflect on one's purpose on this earth. Perhaps part of your role, Leroy, is to add a sane and respected voice to the dialogue around universal healthcare in your country. God knows, your country CAN well afford it -- the problem is, your private insurance companies that are being supported by your current system, CAN'T.

Sent by BAW | 1:18 PM ET | 07-04-2007

I continue to read and appreciate your blog, although I am only an empathetic reader. Mom had lung cancer two years ago; both my step-brother, uncle and brother-in-law have died already from their cancers. You are providing a wonderful service to those with cancer and those who want to understand.
In reading Robert's comments, I am thinking of the number of homeless who found themselves that way due to the costs of fighting catastrophic disease even with good jobs and health insurance. I hope we will soon have universal health care, but, even then, we will need to fight to have procedures covered.
Your article about the "New" couple in the parking structure brought tears to my eyes.
Prayers and best wishes to all,
Judith

Sent by Judith Newkirk | 1:20 PM ET | 07-04-2007

I'm lucky enough to live in one of the 33 states with a high risk pool (for people who can't buy private insurance). Minnesota has one of the oldest and (imho) best high risk pools. This means that everything a cancer patient needs is covered, and premiums and copays are reasonable. But, the plan doesn't pay for itself - not even close. All the other health plans in the state pay to cover what premiums don't, which this year was approximately 50% of the plan's expenses.

Insurance companies are easy to blame. Easy, straightforward answers are, however, rarely complete, especially when you're talking about something as complex as health care. Insurance companies don't have a bottomless pool of money - their money comes from premiums. If costs are higher than premiums, they raise rates the next year. Costs have been rising for decades, and that's why health insurance premiums are increasing at several times the rate of inflation.

The US currently spends 15% of its GDP, or approximately $1.5 TRILLION dollars, on health care each year. Yet our health outcomes are worse than nearly every other industrialized country. Our life expectancy is lower: our infant mortality rate is higher. Improving outcomes depends mostly on how we spend our money, not on how much of it we spend.

This involves hard realities for some of us. I have stage 4 metastatic synovial sarcoma, diagnosed 2.5 years ago. The 10 year survival rate for this disease is 5-10%. Should hundreds of thousands of dollars be spent to prolong my life for a couple years, when the outcome is almost predetermined? Or should that money be spent on prenatal care, cancer screenings, vaccines, routine checkups, and other types of care that focus on prevention? In the UK, my type of cancer, once metastatic, would not be treated at all. That is the priority they, as a society, have chosen.

Obviously I have chosen to receive care. I want to live. But the simple reality is that resources are not infinite, that not everyone can receive every possible treatment. I am lucky enough to live in the US, in a blue state, with easy access to the Mayo Clinic, one of the best hospitals in the world. I am thankful for all of these things, but I am forced to recognize my privilege. The care I receive is not universalizable. That it should be does not affect the reality that it cannot be.

There is a rule of thumb, well known in medical circles, that 75% (or more) of the health care a person uses will be received in the last 6 months of life. For me, this is a horrible skewing of priorities. We should focus much more on keeping people healthy, rather than keeping them alive when the outcome is predetermined. The US health care system focuses on and rewards acute care , as opposed to preventive or routine health. Acute care is flashier, it is more dramatic, but it is not what most people need most of the time.

As a cancer patient, saying these things forces me to recognize an internal conflict. I want all the acute care I can get. I want to see my 30th birthday. At the same, I recognize that keeping me alive is enormously expensive, and wonder whether that money can be better spent helping others.

Sent by Hans Lipke | 1:20 PM ET | 07-04-2007

LeRoy,
So far in all my treatments and doctors, I have been pretty lucky about having every thing payed for. I have three insurances.

But the one thing I can not stand is the difference between opinions of my oncologist and surgeions. My oncologists say everything is going well but my surgeon goes and fills around on my tongue(talk about pain). He says cancer is still present on the tongue.

So now i have to get ready for radical surgery. I may have to do more tongue taken out, jaw taken and lymph nodes.
We surgeon is going to do a biopsey and proced from there. Lots of things to think about

Sent by clark | 1:34 PM ET | 07-04-2007

Sad but true that health insurance today and healthcare in general needs reform badly. It is long overdue. The problem is that it is how many companies earn big profits so change which affects this area will not take place very easily. There are flaws with the medical system, the insurance system and big pharma. But instead of complaining about it we all need to do what we can to make others aware of it. Why Congress or whoever has not set up a task force to tackle the problem and provide some solutions remains a mystery to me. Why not allow retired doctors to provide basic care without fear of license/costs? Why not have Cancer patient days where those who truly care donate services/drugs/treatment to those who deserve both respect and humane treatment? With insurers why not have special requirements for those diagnosed with cancer that shift the burden to the insurer so that new, innovative treatment is not blocked by administrative rules that sre never modernized? I realize we cannot have unlimited costs borne by others but it seems to me that instead of throwing money at the problem we can find a way to handle the extreme health problems with dignity.

Sent by Rich | 1:35 PM ET | 07-04-2007

Well, now we have come to the gist of the problem -- medical care in this country (or rather, the lack thereof for many). Admittedly, I am hugely influenced by having just seen the movie, Sicko, which I highly recommend. But, I have also stood with family and friends fighting the great scourge of cancer and other ailments who have had the energy they should be using to fight the disease, sapped by their fights with the insurer and the many gatekeepers employed to LIMIT care. Imagine, if just all of us (cancer patients and family members) became active in the fight to change this system. Unlike certain of our leaders, I do believe that health care is a right ("life, liberty", etc.) and we are all better off when every one of us has the kind of care that Leroy has access to, and especially when our medical professionals can focus on treatment, health enhancement, and prevention. Leroy -- you are a public figure and better positioned to make a difference than most. The time is now.

Sent by Belinda | 1:43 PM ET | 07-04-2007

George mentioned about insurance codes, and I found this to be very true. I was battling with my insurance company to pay for my pet scans, which they would not. This is a very expensive test -- one public hospital charged us $12,000!! Unpaid, of course, so add that to my mountain of debt.

When trying once again to get preapproval for my third pet scan, I looked at the RX from my onc and realized that the code on there represented only my primary cancer, and there was nothing in "insurancese" to let them know that there was metastases. I looked up the new code myself and wrote it on the prescription. This time the insurance company approved in advance and paid in full.

Can you believe it? Why did the insurance specialist for my onc group not know this? Why do patients have to figure this out for themselves? How many patients even know that there is an ICD-9-CM, otherwise known as the International Classification of Diseases, Ninth Revision, Clinical Modification?

Now we are struggling to get the insurance co to pay for the past pet scans. Hey, aren't we supposed to be saving our energy to work against cancer? Seems like a crime to make us stress out so much about getting our tests and treatments.

Sent by jane | 1:54 PM ET | 07-04-2007

You are in my prayers. My little girl was diagnosed with brain cancer 6 yrs. ago. Have faith.

Sent by Cindy | 2:04 PM ET | 07-04-2007

I know I am so lucky compared to others without insurance. I have excellent doctors and medical care, and my family has had to help me out with my prescriptions and extra expenses.

This really is not the way I planned to blow my retirement savings. There certainly are a lot more pleasant ways to spend all this money.

I think it's criminal that people have to go without health care or have to settle for substandard care.

Sent by Lisa Lindstrom | 2:11 PM ET | 07-04-2007

Leroy, Everything is a battle with insurance companies. They are run by bean counters. They are in it to make money, and you can't make money by saving peoples lives, it is just that simple. Horrible, in this country, this attitude exists, and is a paramount. I am lucky , I have good insurance, but I still have to fight, just like you. All of you, fight with them. Make phone calls, write letters, do everything you can to help change the attitudes. Yes, we could take take of everyone, we are the most wealthy nation in the world, why are we waiting. Something must change, send your message with your votes. We need better options, and it's not just cancer patients, it is accross the board.
Leroy, I hope your meeting tomorrow goes well, and you get an appointment for your first treatment. Stan

Sent by Stan Wozniak | 2:15 PM ET | 07-04-2007

insurance companies refuse to pay for the chemo related injection called nulasta.at 5 grand a pop...they would rather pay for a different injection that goes for a c- note a pop ,owever that injection must be given everyday for 7 days following chemo...the other drug is a one time deal following chemo tx. i could go on and on complaining and it is true..this is such an injustice to an ill person fighting for a simple pleasure called "breathe"....i have learned that in this lifetime you must be a top notch "biatch" in order to be heard for the "simple things " in life.
enough said....we could go on for days,weeks,years....i am one of the "lucky" ones with amazing insurance coverage.

Sent by marianne dalton | 2:24 PM ET | 07-04-2007

I am not a cancer patient or caregiver - just a sometime "lurker" as I have more and more friends being diagnosed with cancer. It has been said there are 3 legal ways to treat cancer in the US: cut, burn and poison. Any other risks a raid by the FDA, the arrest, loss of license to practice and imprisonment of the doctor. It's a more than $100 billion industry and the benefactors are not going to voluntarily loosen their grip on the income stream. The FDA's mission has changed from protecting the public to protecting the industry. It's disgusting and criminal. I'm surely hoping Michael Moore's SICKO will awaken another beast -- an enraged public empowered be sheer numbers who will take back the healthcare system. My heart goes out to all of you who must endure not only the ravages of the illness, but the callousness of a politicized, greedy system that can empty your wallet, bank account, destroy your credit and take your home as well.

Sent by Dawn Whitehead | 2:26 PM ET | 07-04-2007

Thank you so much for bringing up this crucial issue. It makes me very angry because as I read Lori's note I am reminded that there are many hundreds of thousands of young and older people going through similar situations as she is, losing or threatened with losing their homes. Having to go bankrupt. Etc. AND SHE HAS INSURANCE. It's sickening. I would have trouble sleeping at night if I worked in management for an insurance company or one of the big pharmaceuticals. This is a Right To Life issue, those people with major disease - cancer, MS, Parkinson's, Lou Gehrig's Disease, etc etc etc. should never, ever have to give up and let go of life because they have no insurance... or they HAVE insurance but insurance says NO to the treament they need,

Sent by Nancy O | 3:47 PM ET | 07-04-2007

"I think that if an insurance company denies needed coverage, it should be confronted" I had to write to the governor and have the letter bumped down the line to the insurance commissioner's healthcare advocate's office. I could have written the insurance commissioner too but I didn't know if he had had breast cancer like Jodi Rell had. And I wanted it to come from on high so they wouldn't really be sure if it was important or not. It worked. I was covered under the law but I think Cxxxx was hoping I would go away with their "no." Snakes. Not like I have a lot of mental stamina for a fight like that either. It seems that pugnacious, truculent people tend to survive cancer better than quiet, docile ones. I kicked at every step, questioned, prodded, pestered and fired a few along the way. I'm still not sure I shouldn't have had radiation. Even with mastectomies, there are cancer cells that can be lining the skin. And now scientists have identified a type of stem cell that tends to give rise to cancers. A new hope. I am glad you will be able to make use of Novartis. I'll be moving close to Baltimore if my cancer returns.

Sent by Alycia Keating | 4:02 PM ET | 07-04-2007

When my Late Wife was batteling with Breast cancer, I was keeping track of the Insurance info by looking at the monthly bills that they would pay on. At that time we were averaging 12,000 a month (way more than the both of us made) in Chemo bill alone. Since we were at a place contracted with my insurance they paid a lower fee. The facility was getting around 4 to 6000 a month. However if I were to get billed I would get the full amount...Who is making money here??? The facility could take half as much and be fine but would bill me the full amount if needed!. There are changes that do need to be made and maybe your blog can help. Good luck to you
Dan

Sent by Daniel Friend | 4:04 PM ET | 07-04-2007

Codes are a real problem. I went to a doctor who charged $330 for a code R which meant that it was the explanation of my mammogram. The doctor arrived one hour and fifteen minutes late because of a long surgery, but her hair was perfectly coiffed, spent less than 45 minutes of a scheduled hour and a half initial visit with me and charges $780 total.

I called my insurance to ask what the charge was for and then I challenged the charge because she had only pointed to the two views. The radiologist had already spent over an hour explaning the meaning -- and his bill was only $180.

I went to a top university in the Bay Area and the doctor there charged less than two thirds of what she had, but they refused to pay for a test that he felt I needed. The university is helping me appeal.

Sent by Kay | 4:11 PM ET | 07-04-2007

Leroy,

In light of what you've written here, I wonder if you've seen Michael Moore's new film, "Sicko," yet - and, if so, what you think about it?

I saw it on opening day (and wrote a personal review, of sorts, in the June 29 edition of my blog). I think it's a film every person who's having any financial dealings with the health-care industry needs to see.

Forget what impressions you've drawn from previous Michael Moore movies. In this one, he mostly just lets the health-care consumers speak. The stories are sobering, and - in some cases - heartbreaking. People are dying - literally, dying - because of the insurance companies.

For all the reasons you and others are citing, as you share tales of your own medical insurance woes, I believe the time has come for a complete overhaul of our health-care funding system. Of the 25 most industrialized nations, the USA is the ONLY one without universal health care. What are the chances that all those other nations could be wrong, and we alone are right, in maintaining our creaky, corruption-ridden, for-profit system?

Carl
"A Pastor's Cancer Diary"
http://www.cewilton.blogspot.com/

Sent by Carl Wilton | 4:14 PM ET | 07-04-2007

It's sad but true that when people are at the lowest point in their lives physically and mentally, they're often forced to reach down inside themselves for the strength and courage to fight their own health care providers! And confronting the folks who hold your life in their hands can feel like a huge risk. But I think you're right -- only those who don't take no for an answer will get certain procedures.

In my case, I was diagnosed with Stage III breast cancer just a couple of months after a mammogram showed no problem. A year later, my HMO was still insisting that I should trust my one remaining breast to annual mammograms rather than an MRI or ultrasound! I did some research and found that 1.) women with very dense breast tissue like mine are at 5 times greater risk for breast cancer than normal and 2.) mammograms find cancer in such tissue less than 50% of the time, and 3.) digital mammograms only "MAY" be better than regular mammograms for PREMENOPAUSAL women under 50 (not a description of me). Yet Kaiser denied my appeal and then denied it again at the regional level! I thought about giving up, but then learned it would cost me $3800. to get my own MRI. And I was angry! Because I found out that it has been known since 1976 that mammograms are not effective in dense breast tissue. It has also been known for a decade or so that I have dense breast tissue. SO...if they had given me an MRI instead of a mammogram, my cancer would probably have been caught at a much earlier stage! At that point, I went online to the website of the California Department of Managed Healthcare and requested an Independent Medical Review. And guess what? I won! They overturned the HMO's denial and now I'll get my annual MRI. But none of that would have happened if I hadn't confronted my health care provider. My doctor was not too happy with me, and that was a little scary. But I'm glad I persevered.

As for who can or cannot afford a trip to Hawaii, well, nobody ever said life was completely fair or equal. But I just got back from a wonderful overnight stay at a beach about 3 hours from our home -- and it was heaven! It doesn't have to be a South Sea Isle...life is beautiful all over this old world!

Sent by Doris | 4:21 PM ET | 07-04-2007

Dear Leroy and friends,
I am having difficulty finding the words I want to say, knowing this is a public forum. If this post makes it through the editors I hope everyone understands my intention is not to complain, but to cry out for justice, needed by so many who have been robbed by the system.***The reason I am not a still fully functional, hard working member of society, forced to rely on Medicare for my needs, began when a member of the "My Diety" Society decided that after removing a disk in my cervical spine the continued difficulties could not possibly be related to his fine work. I discovered nine months later after suffereing pain so severe I found myself in the office of another neurosurgeon who discovered the bone graft had never fused, and my struggle with the unbearable pain was because I had been fighting a battle I could not possibly win alone. I had a broken neck. He found it amazing I survived as long as I did, and attempted the surgery again. 12 hours later, my spine collapsed from the weakness and I spent a year in a "halo",
an awful metal contraption bolted to your head in 4 places, and after it was removed, it began to collapse again less than 24 hours later. I was air-lifted to the Medical College of Virginia where a Swedish surgeon had begun to use titaniun plates instead of ceramic to repair this type of injury. I was told minutes before being placed under anesthesia if I survived the surgery the best I could expect was to be a quadraplegic but I looked at the doctor and told him I had already said my prayers and I would walk out of the hospital on my own two feet. With a look of disbelief, he proceeded with the surgery that lasted 19 hours, but I did, indeed, walk again and enjoyed a relatively normal life, but was not able to continue my career and found myself in a 2-1/2 year fight to get Social Security Disability benefits. Being denied twice, I then plead my case before a judge who, with no hesitation, approved the benefits the same day as the hearing after listening to my one hour dissertation of the struggles I had been forced to endure to benefit from all those FICA premiums I paid in every check I earned. I thought, at that time, it could not get any worse, but I have learned never to say those words again.***Medicare, viewed incorrectly by so many as
"welfare", promised to see my needs were met.***When diagnosed with breast cancer, I was told I would not suffer inferior care because of my insurance and have been told so many times this is not the reason for my difficulties in finding the proper treatment, but I am questioning that promise now, and believe the list of long list of the "masters of betrayal" is growing.
Something very basic in this country must change because as our society is now living longer lives, many people are finding themselves in this dilemma
and helpless to find private insurance coverage, I believe our population will dwindle simply because diseases that can and are treated humanely for those forced into this situation, will be turned away at the door and swept away like yesterday's garbage. We have become second class citizens, and do not even get the level of care of those who have come here and are not citizens at all.

When I first learned of your recurrence and the possibility of your bones fracturing and collapsing, as mine did, I wanted to offer you the hope that it is not a fact that you will become
paralyzed, I am proof of that. If that serves as any consolation in your situation, I hope I have been successful at something today. That would make me happy.

But I have become paralyzed in another
way. Because of the seemingly incurable illness our medical system suffers today, I am having difficulty finding a glimmer of hope my problems will be resolved on this plane of existence, but perhaps if we shout loud enough, fight and scream, we can hope for a change in this travesty and soon others will not have to suffer what I have been forced to endure. I do not think it will happen in time for me to benefit, but miracles do happen, I am living, and breathing proof that miracles exist. I have been given many more years than expected, and I am grateful for that. So please do not think I am complaining for myself, but crying out for the future recipients, and want so badly for this horror to change for their sake. I am fighting this alone, and my skills as an advocate to fight are dwinling because I no longer have the energy it takes to fight the illness and the system too. I have not given up yet, but I am not certain how much longer my body or spirit will hold up under the pressure. I did not ask for these events to occur, but they did and I cannot change that but I am trying my best to fight the fear and anger I feel because it is robbing me of the very spirit that has allowed me to survive this long and I am so afraid. If I am unable to turn around the tides of injustice, I need help facing the task of acceptance, and I do not want to do it alone any longer. I need help with this part.
Love, Briana







Sent by briana | 4:39 PM ET | 07-04-2007

This was the eye opener I needed. I've wondered about people less fortunate than myself. I complain about having to work. I won't do that anymore. I wondered about going on disability, picking up a teacher's retirement insurance my husband qualifies for until I can go on medicade. I think not. I will continue working for my excellent insurance, continue being the million dollar teacher and pray the next chemo I go on after my restorative trip this summer will work. I was going to look for a support group to find the answers to these questions. But now I can spend that energy in my garden. God bless all of you. One of my co-workers had her friend who was denied some coverage called our attorney general who had things straightened out within two days. I like the lawyer idea too.

Sent by Cheryl McDowell | 4:40 PM ET | 07-04-2007

Dear Leroy,

There is no question that we all need to be our own advocates, not just with the insurance companies, but with the medical profession, as well. And for some of us, that job, while still exhausting, just comes easier than to others. What about that older generation who were raised to believe that doctors were next to gods and were not to be questioned? So many times when I was waiting for my radiation therapy, older patients would be waiting and would talk to me about questions they had and I would tell them they must talk to their doctor and it was clear that they were too embarrassed or intimidated. Not too long ago, I was having some pain and ended up with a ct of my kidneys which showed nodules on my adrenal glands. I was told that I needed an mri, but I told them I couldn't have an mri because the expanders in my chest had magnets. I was then told by a radiologist that I should get on the internet and see what my options were. I did and told them what kind of procedure would give them the same information as an mri. The nodules turned out to be nothing, but I couldn't help but wonder what would have happened to someone who did not have the skills or the language or just the sheer doggedness to figure out what test needed to be done. The system is broken in so many ways.

There are two little words that will get you the insurance companies' attention...Bad Faith. There is nothing that scares them more. Use them. When you are fighting for your life, everything is fair.

Best,
Mo Spikes

Sent by Mo Spikes | 4:41 PM ET | 07-04-2007

Dear Leroy,

In case my last post did not get past the editors, I just want to say "DITTO"
to what has been said here today.

When they say this is a lonely disease, I thought for a long time I was the only one who was being treated like a second-class citizen, but I am now seeing I am not as alone as I thought.
We do need a revolution. I will get in my wheelchair and roll to Washington, DC with anyone who would like to go with me, and stop for breaks to re-charge my battery along the way. I am that angry!!! I am not shy, I am not intimidated by Congress or the President of the United States, and I would say to them anything I would say here. They need to hear from us.!!!!!!!!
LOUD AND CLEAR. It is time for this to stop!!

Briana

Sent by briana | 5:25 PM ET | 07-04-2007

Dear Leroy,

Each day, a timely blog. Cancer, illnesses of all kinds, are so unbearable in and of themselves -- trying to cope with the system to get treatment pushes me closer everyday to committing suicide.

This idea came to me today: hold a
"Die-In" outside the Capitol, in Washington, DC. Fill the Mall with beds and cots of sick and dying people and their caregivers, refuse to leave until the "for profit" healthcare system that is in place now, is dismantled, and everyone who needs healthcare, gets exactly the best care available. Since most National Guard troops are stationed in Iraq, etc., maybe now is the time, because who would the Bush administration use to get people to go away? Guess they'd have to use the private militia, Blackwater.

Anyone who is too sick to get to Washington, DC, could go to their state capitol, their city mayor's office.

Well, that's the basic idea. As you might can tell, I really don't feel well today, and the person who is the caregiver in my life, is worn out too.

Just can't take anymore.

Sincerely,
Kim B.

Sent by Kim Blankenship | 6:11 PM ET | 07-04-2007

I know this is nasty of me, but when I read posts like the above (and we have similar horror stories) it reminds me that I wish some of the energy that goes into "walks for the cure," and ribbons and whatnot towards research would instead go to helping current sufferers -- RIGHT NOW! And, as many observe, it's not "just" the patient who suffers and goes broke but his or her whole family.

I know paying to help someone cover their bills isn't as sexy as 5Ks and similar, with commemorative T shirts, but it sure feels more urgent from where I sit.

Sent by Teri | 6:33 PM ET | 07-04-2007

If our legislators had any self respect at all, they would come out and tell the American public, that thanks to tax payers, they have excellent insurance benefits "for life" and have set themselves up nicely just in case they or their family members become ill. That is why they don't understand the problems that other Americans have with insurance companies. They set themselves up with big pay raises and cushy benefits that the American people don't even know about, and "their" real life problems aren't even in our realm of reality.
I'm in remission from stage III, inoperable lung cancer. I went back to work a year after treatment. But radiation treatments damaged most of my right lung, so after a couple of years of paying me to do less than half of my job responsabilities because I have so many breathing problems, I was fired.
While I was in treatment, my doctors told me that I should apply for Social Security Disability, but my boss told me that he would hold my job for me, and not to worry, so I didn't. Now, after "working" for 2 years, I have applied for SSI. I'm sure I'll be turned down, which means that I'll end up going bankrupt, and ruining our credit anyway. Again, the government agencies at work.
I agree with John Shippee, I think that those of us that can, ( I can type, I just run out of breath getting to the computer ) should try to organize and find a way as a unit to petition our legislators to fix these problems. I'm going to e-mail him and see if anything can be done.

Sent by Ginger | 6:37 PM ET | 07-04-2007

I'm told I owe a total of nearly 15,000 (which over the years isn't bad, since monthly treatments cost 12,000 to 20,000) but it's still too much.

We need radical reform in health care. Now. It's sucking the average consumer dry. I don't have 20,000 laying around...do you?

Sent by Bruce | 8:41 PM ET | 07-04-2007

We have been very lucky with the insurance provided through my wife's company -- in fact, when she had to leave her job after my son's treatments became all-consuming, we chose to COBRA hers, rather than deal with the lesser quality insurance through my employer.

Even though they've been excellent, and paid for practically everything in my son's treatment, the past few months we've had to address inconsistencies in their payment process -- they paid for a procedure one time, then didn't the second.

Whe you're battling the day to day complexity of the disease, along with the complexity of the medical establishment, to have the last bit of your energy zapped by insurance companies is almost too much. I certainly join the chorus advocating for change.

Sent by Tym (http://vampdaddy.blogspot.com) | 8:47 PM ET | 07-04-2007

I have insurance that covered most of my late wife's cancer costs. Hospice, bless them, does not charge for the deductibles. But I had to take out loans for medicine, and no income from my wife. It took a lot of my time to work problems of billing and payment like so many others.

Jodi is gone, but the bills remain. I have had no choice but file bankrupcy. Many bills seemed to stop coming when informed she died and no estate.

However, my attorney said that most of these bills get turned over to collection agencies that then wait close to the five-year statute of limitations. Then they hit the spouse with this bill, having massive interest accrued, fines, penalties, many times over the original co=pay left over. He said you must still discharge ALL medical bills to prevent this. What a wicked racket, appearing to excuse the bill, but no, hit them years later, can't refile bankrupcy,and trump up charges you must pay,even with patient dead!!

Sent by Steve F | 1:59 AM ET | 07-05-2007

My comment was inspired by Jenn.I received 2 1/2 of my 3 chemo treatments here in Germany, in a German hospital, where I currently live. I finished the second half of my third treatments at the American Military hospital. I am fortunate to live near the largest hospital of this type in Europe. I needed to be around English speaking people. After finishing my third round, it was my German doctor that wanted me to continue with 6 more months of chemo. I discussed this with my American oncologist and he found no reason to pursue a "maintenance" chemo. I even had a PET Scan to make sure that there was no evidence of tumors. The reason being, if there is no disease, then why treat with a toxin like chemo. I agreed with this concept.

I do think it appalling that insurance companies play a role in determining a person's treatment. I may be in for a fight to get my insurance company to cover my PET Scan. I submitted my claim and now they want my physical history and the PET Scan report. Never mind the fact that they have been covering my ovarian cancer related bills since May 2004. Now they need a physical history. All they have to do is look at all the bills I sent to them the past 3 years. Of course I just do all this for the freaking fun of it!!!!!

Thanks for letting me vent a little.

Sent by Betty in Germany | 2:50 AM ET | 07-05-2007

Hello Leroy and everyone else.

Leroy, firstly, it was great to see you on Discovery network w/ Ted and hearing you the day after on Morning Edition. I have been reading but not commenting. I cried when I read they discovered the new tumors and really didn't know what to say...so I sent as much positive energy as possible your way.
Melody had a great case worker. Her and Melody had a wonderful relationship.
A thought came into my head...remember the blog that got me started me writing? It was the one in the middle of January...where a woman (I think her name was Nancy) was questioning if it was morally right to spend so much money on sparing 1 person who seems to have led a pretty blessed life? Maybe this was the real question...insurance. You are getting this because you are fighting for the coverage and fighting the system. If you fight, they will win some...you will win some. If you don't fight...they will win all!
I think it is a shame that Melody wasn't offered the same options you were with the RFA therapy. Her insurance would not allow her to go to the Mayo or John Hopkins, or even a Cancer Treatment Center, but she did go to Northwestern in Chicago which was an ok hospital for cancer. But the doctors were all about the drugs, and some of the care nurses were really bad. It was a good thing that I would be there every night and sleep overnight.
But here is a thought...it is said that the drug companies own the doctors. So who owns the insurance companies? Who polices them? In other countries who have healthcare provided by the government...what happens there? How does the government handle these situations?

I didn't get to read everyone's response, but this looks like you just wrote another "Nancy" Blog...jezzzz, look at all the pissed off people. OK Leroy, you have yet another lot in life. Beside helping all these people with their outlook on cancer and giving the comfort, besides fighting the beast yourself, beside trying to keep your family sane with the emotional roller coaster ride you are on,...you are now the voice to the insurance companies saying..."Hey...the the hell are you dong?"

Wow.

Affectionately,

Michael

Sent by Michael (Caregiver Survivor) | 3:05 AM ET | 07-05-2007

I hope you will post this, I took the day off from my computers.

My sister, no insurance, finally has Medicaid. Several months ago, I was her spokes person literally. I would spend 2 hours each time it was necessary to handle anything to do with her hospital bills, and believe me there were many bills to deal with at one time.

She is also on disability and according to the rules, except in unusual circumstances, you have to be on disability for 2 years, before you can get early medicare. Suddenly, I was told she was on medicare. Of course, I immediately questioned it. I had her follow up with her case worked, and she even agreed. Both the case worker and I sent her to the social security office, they said NO, not until May 2008.

Two trips to the ER one month apart because her PEG (feeding tube) failed. A call from the hospital. Medicaid is rejecting the bill, because she has Medicare. NO, I tell them, not until May 2008. POA faxed to the treating hospital, a page neither of us can decipher telling the hospital she IS on Medicare. More messages, more waiting, the next day an explanation, and another call to her case worker (great to have someone to go to for answers), and the error is discovered. No one picked up that her Medicaid papers were technically coded for Medicare.

Medicaid, medicare, it does make a difference. More commonly standard of care includes PET scans.... not for the patient without insurance. Laser surgery may be needed, not if your being treated at a county facility.

Fair, NO. Cultural shock, YES. At least with Medicaid you have a few more options for treatment. Medicare maybe a few more. Better... insurance, even bare bones is better than nothing.

I hope everyone had a safe July 4th

Sent by Susan Chap | 6:25 AM ET | 07-05-2007

Thank you for the "how can you condem me" statement. I'm preparing for the fight when I get my follow up MRI on my breast. It has been recommended over mammograms for high risk people but I'm guessing the insurance company isn't there yet. Thanks Leroy.

Sent by Lisa | 7:06 AM ET | 07-05-2007

Leroy, if you get a chance, can you write a blog on what we can do to facilitate the needed changes to our healthcare system? Even as a health care professional, I don't know where to begin to make a meaningful change.Thanks.

Sent by Lisa D. | 8:31 AM ET | 07-05-2007

How can anyone even try to make that kind of judgment? To decide how much money should be spent to save a person's life?

I read this on your blog and I did ask this question myself when I was fighting with my insurance for a procedure they never approved even after 3 appeals. It is devastating but even though I was not approved I continued fighting, it is so sad that many of us are currently on chemo tratments and radiation, sometimes to sick to deal with it but I move on and I write to my Congressman and my Senators and speak up about all the injustices cancer patients go thru, from finding a doctor that will listen to you and support your desicions to an insurance company that doesn't use the words " experimental" as an excuse to not pay for treatmnets like Cyberknife, if its never done it will always be experimental, we all need to make our voices heard, call the newspapers and make it public, email the people that represent you and can make a difference by passing bills and laws to help and protect low income people to get screend and treated,they need to know how many of us suffer thru huge amounts of paperwork and red tape, they work for you, advocate for yourself now so that our children and grandchildren don't have to go thru what we have.

For many of you who need help and don't know who to turn to call your local cancer society, they will help you.

Sent by Mia | 8:34 AM ET | 07-05-2007

I actually received a letter from my insurance company stating that removing the malignant tumor from my breast was NOT medically necessary. Crazy. I just laughed. Of course, that couldn't stand, but it gives you a sense of how 'automatic' these responses are.

Sent by Jen | 10:42 AM ET | 07-05-2007

Is there an Insurance site for pre cancer patients to check out before we get cancer. I have Medicare A&B and AARP J plan. I have no idea what that means in terms of reality costs for the best treatment. What is the best private ins for people like us, possible future cancer patients?

Sent by elizabeth sebastian | 11:38 AM ET | 07-05-2007

Many of the decisions made at the insurance company are not made by Dr's but by high school grads with very little training.

Sent by vicki | 12:40 PM ET | 07-05-2007

The US needs Universal Health Care now. Go see Michael Moore's Sicko and see how people in Canada, the UK, France, and even dirt poor Cuba pay for their health care. They pay taxes. They DO NOT pay for health care. In France, the government provides a new mother with a nanny to help her, even do the laundry!

Sent by Dianne Rhodes | 1:17 PM ET | 07-05-2007

Dear Leroy and Friends,

For Susan Chap re: your sister's eligibility for Medicare, after you are approved for Social Security Disability benefits, there is, indeed, a 2 yr waiting period to be able to enroll in Medicare, but when approved SS is then retroactive to the original date of her disability, and if it took her 2 yrs or longer to obtain the benefits, Medicare has been made effective immediately. The 2 year waiting period was already satisfied, and this would explain why you are being told she is, indeed, eligible. She also should receive her disability benefits retroactive to the date of the original disability, which would give her a large check in the beginnning to catch up for the time it took to be approved. I firmly believe they count on people to either give up out of frustration, because it ususally takes 3 appeals to obtain, or die before the benefits are approved, letting them off the hook. I believe it is a game because the last appeal most often requires hiring an attorney to go before the Administrative Law Judge.
The attorney also gets a commission, which is another travesty. In my hearing, my lawyer was only allowed to say "Thank You, Your Honor", because I had already done all the necessary preparation to build my case prior to giving my testimony. I hope this helps. I know this sounds very confusing, and if you need further help, I will be happy to do all I can to assist you. Please let me know.

As you are aware, I am ready and very willing to go anywhere for treatment if I can get someone to take the time to clarify and find out just where I stand with my cancer, but I am just as eager to go to Washington DC to help to make our voices heard. Already stated, I would need to stop enroute to charge my battery, but I am not afraid to MARCH or do WHATEVER it takes to get the legislature to listen to us. I do believe it would help to "BE SEEN, AS WELL AS HEARD", they would be less able to ignore the faces looking directly in their eyes. They would see very clearly and experience the pain in the faces of those who are living this nightmare. I do not think many of them read written appeals for help, they are simply discarded.

I have contacted ACS and AARP and as many of the advocacy organizations as possible, and only referred back to the doctors who have turned their backs to me. When I saw the physician Friday who
orignally diagnosed my cancer in February 2006, he did not even bring my chart into the exam room, just came in and said it was "not his department", and offered me no referral to anyone who could help. If anyone knows of any other route to take, please let me know, I no longer know where to turn at this point. I know I am not the only person in this struggle, but I am still alone in my all the work involved to try to obtain it, and my heart aches for the human contact I believe necessary for any one of us to survive, much less thrive. This is completely out of my realm to even ask, but I am reaching out for any prayers you may have to offer. I am very grateful to all of you who are here and listening, and with that I will end with a heartfelt THANK YOU and I send my love in return to each of you.

Love, Briana


Sent by briana | 4:05 PM ET | 07-05-2007

Wow, this addressing this topic sure opened a can of worms. We ALL have stories to tell about our individual problems with health care costs!!! I could feel my stomach tightening with sympathetic angst as I read each comment.

Hans Lipke has presented a very balanced perspective, I think. This is a VERY complex problem. Not any simple solution will fix our broken health care system. the problems are not the fault of only insurance companies, or only pharmaceutical companies, or only greedy hospitals or doctors, or malpractice lawyers. It is a combination of all of the above PLUS the desire of each one of us to have all our health care needs met,no matter what the cost and without any waiting period for anything.

Sent by Sandra Shuler | 4:25 PM ET | 07-05-2007

Once again (and I hope some candidates are reading): What is the most efficacious way for our point of view on the urgent issue of medical coverage for cancer and related expenses? I'm about ready to vote for whoever has a credible plan.

Sent by Teri | 5:34 PM ET | 07-05-2007

Add me to the list of bankruptcies.

Even with insurance (mine covered Terry and me both, thank god) the bills got insane and we both had to file. The trustee asked me why I was filing when we weren't married, and I told him that everything we owned was jointly held, including all the bank accounts, so they could come after me for Terry's debts.

Our debts were discharged, but like I said earlier, I'm still getting a bill from my insurance company for 15 grand, which quite frankly is money I don't have.

So yeah, count me in in any movement that might develop to lobby Congress to fix this horribly broken system that even those of us with decent insurance (and mine really is pretty decent, believe it or not) can be left permanently crippled by. It's bad enough that we fought for years and Terry died anyway. I shouldn't have to deal with the burdensome aftermath thanks to a damaged system of "care".

Sent by Bruce | 6:06 PM ET | 07-05-2007

Dear Leroy,

I just received my mail and there was a letter from Medicare/Medicaid that the CD that holds all of my personal information has been "lost or stolen", and until they are able to locate it, if ever, I need to contact everyone I do business with. including all banks, credit reporting agencies, credit card companies, health care providers, and essentially anyone I have any type of financial dealings. The real warning that was shocking was the urgency to contact every doctor, hospital and everyone I have come in contact with medically and to check carefully each Explanation of Benefit form I receive to insure no one is using my medical
information to get health care benefits
illegally using my social security number and medical ID numbers. They informed me I am in danger of not only identity theft in the normal sense of the word but also using my benefits, such as they are, to steal my treatment benefits from me as well.

Could this be what has happened and I no longer have coverage? Talk about fear! I don't know if I can take any more of this!

Briana

Sent by briana | 6:44 PM ET | 07-05-2007

Leroy, I find comfort with your blog because to me you are an average patient. I have a hard time relating to those who are "cured". I am happy for those who were stage 4 and were treated and never reoccured, but I cannot relate to them. I think your story is more typical of the many out there "living with" , "dying from" or "fighting" cancer.

so far my insurance coverage has been great. I am now at a point where my treatment options are experimental and I may get to the point where I cannot work or afford health insurance. Fighting cancer is expensive and at some point we will all share in the burden by sacrificing what resources we have left or forgoing treatments that are too expensive. I am struggling with judging the VALUE of treatment. How much should I expend to try to extend my life and make what I have left better? If I exhaust all my resources, I will have nothing to leave my child.

Sent by Jill | 7:46 PM ET | 07-05-2007

I have friends who have told my fiance that I shouldn't see Michael Moore's film Sicko. They think it would upset me too much. However, as someone still paying off my medical bills after my bout of cancer, I can honestly say that I already know too much about the
subject matter. And I feel like I had good insurance.

I was struggling to pay for things all throughout my treatments, but after I finished treaments, some of the biggest bills began to roll in, including one that was due immediately and far more than my annual net salary. I can still remember asking loudly on the phone to someone in patient accounts, "Why didn't you give me an estimate? I might have done something different? My vet gives me an estimate. My mechanic gives me an estimate. Why can't you people give estimates?" "We don't want to traumatize you" was the answer. "Well I'm traumatized now!" I yelled loudly in response. (I honestly thought she'd tell me it was a mistake.)

Well along the way, I learned a few things:

1. The most important being to get and stay in communication with everyone - the billing/patient accounts people and the insurance people. I learned to call my insurance company at every step of the way before I began a new treatment. That way I could find out
directly from them what I needed to do in order to work within their system and rules. I spoke most often to people in pre-certification regardless of what my booklet said, just to be sure I did things properly. I believe that this prevented quite a few problems. I could
be wrong.

2. Have a photocopy of whatever needs to be submitted from your provider so that you can run it through a copy machine, stuff it into an envelope and submit it all again. (And again, and again ...) I and one of the people in patient accounts/billing discovered that each time we re-submitted, a little more stuck and was paid. Having a set of everything to simply run through a copy machine turned it into a quick, silly task that didn't require
much time or thought. We did this for about two years,