Topics: Health Care Reform discussions and videos (please take a few minutes to look and read), Life with a Rare and TERMINAL DISEASE, Cost Options for treatments with carincoid and Laurie Todd's Insurance Warrior Newsletter and Book (highly recommended):
HEALTH CARE REFORM IN AMERICA- VIDEO LINKS TO BILL MOYERS PBS STUDY
Health Care Reform in America? A tremendouly complex question and one that if I didn;t have this disease, would probably not take too much interest in, and would be against probably.
I have attached below a link from PBS presented by Bill Moyers regarding the issue of health care reform. There is also a video of a x-CIGNA EMPLOYEE, Mr. Wendell Potter, who worked in the inurance business for over 20 years. He states on the video how he has seen how profits have "hijacked" our health care system and put PROFITS before PATIENTS.
In the video "watch2.html" video, he discusses how health care companies are standing in the way of health care reform. You decide!
This is one of the most important issues facing this country and this industry.
In addition, on this blog, is a NEWSLETTER by the "insurance warrior" Laurie Todd, relative to this issue and an ad for her book--- I highly recommend you purchase this book if you are dealing with insurance companies, along with finding a ethical, competent insurance laywer, to represent you through the process so you are able to leveage THE BENEFITS YOU PAID FOR.
The Bill Moyers discussion is an excellent, thoughtful video, and documentation, on this most important structural issue facing our country today (along with 100 other things I might add)- Public Insurance Option, HEALTH CARE REEFORM and Checks and Reviews on Insurance Companies and coverage plans.
You need to get involved. I plan to, and will write you how best to do it, off line, if interested or if you post on blog.
The VIDEO LINKS ARE: PLEASE WATCH AT LEAST ONE (RECOMMEND #2) -- cut and paste on browser to run the video or click on title above to be directed straight to it.
http://www.pbs.org/moyers/journal/07102009/watch.html >>>>Video on Health Care Reform
http://www.pbs.org/moyers/journal/07102009/watch2.html >>>>Interview with and Insurance EMPLOYEE
These are excellent videos on the tactics of insurance companies, and the processes they use, sometimes with people lives, in order to meet SHAREHOLDER EXPECTATIONS. This is not a "crazy thing", profits in the US are what keep companies alive. The issue is profits, on the backs of dying people? Is that fair, if indeed it is happening?
In this business, it may be an insurance clerks, without medical knowledge or understanding and their staff who are managing my disease, my life, and my death, and with a company that has a need for strong, robust PROFITS annually.
If it was not for the fact that 1) I had 4 years of experimental treatment where there was no drug cost to the insurance companies for the drugs (BTW- and not one word or "thank you" did I receive from anybody in my insurance company during this time), 2) Paid for 5 months of RAD out of pocket due to denial appeal- Not FDA approved, although the Md was ordering it at the time for me, at a out of pocket cost of $13,000.
3) I recently left to Europe, like so many others in the USA, to receive PRRT treatment, as a "last chance option", while I waited for approval from insurance that classified my terminal, advanced cancer to a "non life threatening and non serious" and therefor would "go through the normal process of appeal" to be seeen by a clinic not in network.
What did I do then when the insurance process stopped me from getting treatment? I became (and have become) an empowered patient, found THE BEST treatment alternative, at a very reasonable cost (compared to US), with the most advance
d cancer imaging, and targeted treatment, to manage my cancer, relieve my pain and stay alive.....Net, as noted before, I collected what money I had and flew off to a foreign country in order to receive Life Saving Treatment. This treatment is not approved in this country, nor the advanced imaging scans for the moment.
As my insurance company considered my appeal for me to see a nearby MD (2 hours away) in order to get imaging tests completed there, to determine what options I had, I found a miracle and took it!
Just in case, this is what is inside my body in May- the black areas are tumors except for the spleen. The cancer is neurondocrine carcinoma, intermediate grade 30% KI Index!, classified as advanced. In addition I have chronic kidney disease classified as moderate with high creatinine and a GFR of 40, more or less.The tumors are all over- mets to belly, lymph nodes throughout, both lobes of the liver, tumors running up to the kidney base and a bone lesion in the base of the spine. Currently, the only thing not infected with tumors are the brain and lungs....... Now you understand why I was in such despair and P-A-I-N! Also, your mental capability is shot, as you fight the disease, take experimental drugs and injections, have vital organs removed and then over run by cancer, and overall one gets something called "cancer depression" and it affects not only the patient but family members. It really is terrible. As noted prior, if I end up in hell after this is all over, I won;t notice the difference, not even the heat as its now HOT AS HELL IN THE MIDWEST.
I am sorry if I have repeated this so much, but I have to thank God I found a brilliant, caring and energized doctor who took me in, at my worst moment, to make a difference, in extending my life reducing my pain, and offering me treatment, as he is for many others with this disease.
His name is Dr Richard Baum, and his very competent staff of nuclear medicine doctors and assistants are located in Bad Berka Germany. They are, and will continue to make good things happen for desperate folks like myself. I can never thank them for what he did for me.
If you want to know more, there are plenty of videos and studies on him in prior postings.
The Insurance Warrior news Letter, Book and CD- how to work with insurance companies
Below I have also included Laurie Todd's well written article on insurance and the profit dilemma. I recommend this book, which includes a CD, if you have a chronic, long term disease.
Insurance companies, like all companies are in the business to make a profit.
Its noted by Mr Wendell in the Moyers interview, that in the early 90's, 95 cents out of every premium dollar was used to pay insurance claims-- YOUR TREATMENT AND CLAIMS. Last year, 2008, it was slightly above 80 cents! The lower difference is in profits, overhead, eliminating people off the insurance rolls, denying claims, purging employer accounts- increase the premiums on small companies. Net, if more premiums go against claims to pay for medical care, the company is punished by Wall Street- that increased 15% margin goes to shareholders pockets, salaries and bonuses and overhead for the company. The issue is, at the end of the day, its the unfortunate souls suffering from a terminal and long lasting disease that suffer from the profit push.
Those unfortunate enough to land in cancer/rare terminal illness hell.
After watching Mr Potter's discussion, I am convinced what President Obama (who I was not a supporter of (is trying to do THE RIGHT THING IN FOCUSING ON THIS ISSUE, FIXING AND CONTROLLING THE INSURANCE and DRUG cost PROBLEM IN THIS COUNTRY. However, he will need our support with Government lobbying.
THE INSURANCE COMPANIES ARE DOING THE LOBBYING TODAY TO GET THIS SQUASHED.
WE HAVE TO DO IT OURSELVES- ONE INDIVIDUAL AT A TIME. NOW IS THE TIME TO MAKE A DIFFERENCE.
Finally, as Ms Todd discusses in detail her newsletter, how can we object to insurance companies wanting to make a profit? The problem is we are talking about HUMAN BEINGS. When profits are created, as noted in the video, at times this is done by making people not insured, and make decisions on patients procedures and coverages- DENIED- or finding loopholes to not pay for services, or if they do pay, do not pay too much at all!
Now to be clear, the MD's, Hospitals and drug companies also have some blame due to the excessive billings. An example: in Canada, an injection of one of the drugs used on this disease- the cost is $1700 CAD, plus the drug company send a nurse to your home to administer it.
In the USA, one needs to go to a clinic/hospital where the billing range is $6,800 to $15,000 plus $200 for the nurse. The brand is a $1billion dollar brand in the USA for this company. Yes excessive billings practices could also be a problem.
As noted in the video, The INDUSTRY (Medical and Insurance) MAY ATTEMPT TO DEFEAT THE PROPOSED REFORM. THE STATUS QUO IS WHAT WORKS FOR THEM TODAY.
THE MONEY IS TOO GOOD AT THIS POINT, AND WITHOUT CONTROLS AND THE ABILITY TO MAKE "STAND ALONE DECISIONS", AND ONE SIDED DECISIONS, ON COMPLEX AND RARE DISEASES, WHICH MAY PUT ONES LIFE AT RISK, IS A PROBLEM. HOWEVER, SHAREHOLDER VALUE INCREASES WHEN LESS MONEY IS USED TO PAY PREMIUMS! AND THOSE OF US THAT OWN THE STOCK ARE HAPPY!
JOHN KENNEDY IS QUOTED IN THIS STORY "Profiles in Courage" with the following (PER VIDEO, WHICH I LOVED)-
"The hottest places in hell are reserved for those who, in times of moral crisis, maintain a neutrality".
WATCH THE VIDEOS TO HELP MAKE UP YOUR MIND ON THIS ISSUE
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Letter by Laurie Todd- The Insurance Warrior
I recommend you purchase this book and the CD, It will come in handy when you appeal for coverage such as "off label chemo", PR RT coverage, "out of network coverage" and just A simple "STAY ALIVE treatment", which MAY BE DENIED by the INSURANCE COMPANY.
I have realized I am dying from this disease, and HAVE BEEN fighting it with all my strength and knowledge and power that I can muster, ALONE. However, once I started down "the journey in hell- full time" and off the experimental (free) drugs, and now need care and insurance to therapy and treatment, etc, I realized I was also fighting insurance companies-- to receive medical care and drugs that for my rare disease that are simply classified as "off label" as I do not "fit in the box" due to the rare nature of my disease-carincoid cancer, renal carcinoid (goggle that last one and tell me what you find). And mine being "renal carcinoid" where in recent literature, it was written there are less than 50 published cases with this disease. That was from an article 4 or 5 years ago. Even if you made this 2000 or 5000 total cases writteen about, you still have a very VERY RARE DISEASE. And for those that do not understand what this means, IN MY LIFE, here goes:
1) MD's- there are very few doctors that understand, test and can treat this disease effectively. There are none in my city. So one has to travel and hunt for them and then decide if they are the right fit for you or whether they have a treatment that will work?
2) Treatments- there are very few treatment options as drug companies do not spend money on research for such a small group. Therefor the treatments are few and far between. For me its meant experimental treatments and perhaps off labe; drugs.
3) Surgery- the gold standard and #1 option for this disease. I have gone through three surgeries already. Once the cancer starts to metastasize, and surgery is ruled out (some places still operate, even with extensive disease), then
4) Systemic Therapy- one of the few "labelled' drug for this cancer is Sandostain. Some studies suggest it has "and inhibitory effect" on the tumors. In my case, IT DID NOTHING relative to stopping the tumors. Could they have grown faster without it? Perhaps, but in the end, I went from 3 lesions to a body full of tumors throughout, while taking LAR 30 monthly. The injection is very expensive. The highest cost I have experienced is $15,500 a month/per injection!
Net, that is a lot of money for something that is not working. (sando web site is on left side)
5) Other Drugs- Most of the medicines that are used against this disease would be "off label", if not all. This means you have to get your MD to write the insurance companies and appeal coverage. They hate this as it runs their time down as they are over run with patients. The drugs available now (RAD001, avastin, etc linked on left hand side) do not get rid of the disease, but instead at best, shrink the tumors somewhat and stabilize them, FOR A PERIOD OF TIME. USUALLY 1 YEAR GIVE OR TAKE. THEN THE TUMORS START GROWING. (a number of these drugs are on the links on left side)
6) Other specific therapies- if your liver is covered with lesions (mine is) one can perform liver specific and targeted treatment (chemo emobilation (sic), Sirspheres, etc) which reduce the tumor burden, and again stabilize the disease in the LIVER for a period of time. Also,
5) Clinical Trials- One can go on clinical trials and take medicines from the drug company to test its effectiveness. In some cases it will not work at all, in others, good results. In the majority of the cases, one may get some results- partial remission, stability- however, typically the person will be taken off the study within a year as the drug company will have enough data. The medicines are typically given free of charge, which is a big break for the insurance companies- THEY DONT PAY. I estimate I saved $500,000 to $650,000 in charges for my 4 years while on clinical trials to my ins. company. It cost me however, as I paid for travel, car, hotel, and normal medical deductibles during the study. I estimate it cost me over the 4 years in travel expense alone over $100-$125,000 for the 4 years MONTHLY TRIPS. This was out of pocket. (You can find a clinical trial with the links on left hand side- that is how I found my second one- pazopanib 800mg-- by getting on the web and on line and searching).
And finally,
6) PRRT Targeted Therapy- this means one will need to go to Europe to receive a treatment, which has been in use in Europe for over 10-12 years. The results are simply the best of any systemic therapy around (all above, except surgery). Studies have shown ~40 months of stability, remission, etc from the start of the treatment. The side effects are minimal, and one can normally stop taking other drugs (LAR30 if one does not suffer from carcincoid syndrome), which is a savings of $150,000 a year for the insurance company. (info on previous blog entries)
This therapy is not approved in the USA so the patient must pay for not only expensive travel, but also for the treatment, hotel, etc. One of the benefits, the most effective systemic treatment for neuroendocrine tumors available (for those with receptors), is the cost.
The cost is typically very low compared to US prices.
In Rotterdam, the average cost of the therapy, which included hospital, scans, etc. was ~$10-$15,000 per treatment I BELIEVE. One needs to have receive 2-4 treatments for it to be most effective.
This treatment is typically denied by the US insurance companies and one has to file a formal appeal. There have been a great number of people who have been approved however, through persistence and the right appeals and letters. Some of them will be more than happy to send you what they did and how they did it.
Ms Todd's book covers this topic in detail.
Cost Benefit Summary of PRRT versus Standard US Available Medicines to treat Net Tumors
As a cost summary, for $40,000 to $60,000 over a span of one year, one could conceivably benefit from the PRRT therapy, for 3 or 4 years or longer (range is 20 months to 100 months!). http://www.prrt.nl/index.php?lang=en
The side affects are few (kidney or bone marrow), and quality of life tremendous. Now, some people get NO BENEFIT FROM THIS TREATMENT, so its not a miracle cure by any means. But its the BEST we have so far, aside from surgery.
A treatment in the US, systemic whole body treatment, of say, Avastin with LAR 30, would cost in the range of $15,000 to $25,000 A MONTH. The most likely benefit being stability, perhaps some remission, for a period of 50 or so WEEKS. The side affects are very difficult and quality of life diminishes (except for RAD/Affinitor which I had very little side effects ON ME).
It seems like an easy decision for any insurance company to make as laid out, I believe.
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Below Laurie's NEWSLETTER
(btw, if input or corrections, write me please, I wrote a lot and need to clean the house so wont have time to review in detail).
The Insurance Intelligencer
6/25/09
I can put it in three words: Insurance. Drives. Care. A private, for-profit corporation gets to decide whether or not they will pay for lifesaving treatments, which are always astronomically expensive.
Make no mistake about it -- health insurers are for-profit businesses, no matter what they call themselves. It is the job of a business to minimize operating expenses, and to maximize profits. That is what a business does.
We would not expect any other business to care about our lives, or about our quality of life. We would not agonize over the fairness or unfairness of any other business's decisions. Why are we so shocked and disappointed when we discover that Acme Insurance is not the least bit moved when we tell them, "But, without this treatment, I will die"?
Because of the propaganda.
I am not outraged that a bureaucracy makes unfair decisions, or that a business doesn't value lives above profits. That's life in the free-market economy. What does rile me up is the vast body of propaganda, designed to make us believe that they do.
The website with photos of happy, healthy insured people. Riding their bicycles, gazing up at the name of the insurance company: Neighborhood Healthy Choice United. You know, the insurance company that will refuse to pay for your child's brain surgery. The same insurance company that, if you need out-of-network treatment for breast cancer, will bill you for an extra $200,000 beyond what they consider to be "reasonable and customary." Some choice.
We have lived under this insurance-driven system for forty years -- so long that we accept it without question. We cannot imagine any other way.
In what world is it acceptable for a health insurer to pay for a lifesaving treatment for a hundred cancer patients, then to turn around the next day, and deny the same treatment as "Experimental"?
In what world is it acceptable for a health insurer to have the sole, unfettered power to decide how much they will pay for medical treatments? To keep this payment information secret. And to generate the numbers themselves.
In what world is it accepatable for a health insurer to deny a cancer patient the one treatment proven to prolong his life -- a treatment which costs $50,000 -- while spending $1.5 million on routine in-network treatments and surgeries, with no scientific proof that they will prolong his life, or give him any clinical benefit whatsoever?
Not in my world.
Let's see a few of the ways in which insurance drives medical decisions.
Your doctor: The gatekeeper
Your Primary Care Physician looks like a doctor. He wears a white coat. He asks the questions that doctors ask.
As you sit in his office describing your symptoms, you assume that Dr. PCP's job is to discover what is wrong with you, find the best treatment for your condition, and order the treatment for you.
Think again. The Primary Care Physician's job is to be the gatekeeper. In other words, to control access to medical services. A job which fulfills the primary goal of a business, which is to control operating expenses. Sounds like an insurance job, not a medical job.
If the best treatment for you does not happen to be offered in the insurer's network, it is not his job to find it, to offer it, or even to know about it.
This is one of the deeper problems of insurance-driven treatment.
I have a late-stage cancer. There is one out-of-network treatment that could rid me of the cancer, and give me a 70% chance of non-recurrence. This treatment has been performed, studied, proven for thirty years. In what world is it acceptable for the Chief of Oncology to say to me:
- There is no treatment for your disease.
- If there were a treatment, they wouldn't pay for it.
- If you had this treatment, you would be disabled.
- I wouldn't send my mother for this treatment.
Ignorance? Acceptable. Because, in the insurance-driven world, if we don't have it in-network, it doesn't exist.
Lies? Acceptable. If he champions an out-of-network treatment for me, it will be a monumental hassle for him, and they won't pay in the end.
My current local doctor is smart, diligent, respectful, and hard-working. However, even he is infected with insurance-think. Whenever I bring him new material to read about the treatment which saved my life in 2005, he says, "Of course, your cancer is so rare ... we won't see any more cases of it."
The horrifying presumption is that it is our job as insurance medical providers to treat the lowest common denominator of diseases and conditions. Why would we go out of our way to learn about a "rare" disease?
I belong to a very small HMO. I am not privy to medical records. I personally know of ten members of the HMO who have been diagnosed with my type of cancer. One of them was the wife of an HMO doctor. She was mistreated there for three years, until a friend happened to tell her about me. I talked to the patient, and to her husband the rheumatologist. They called my expert surgeon, but it was too late -- her disease was too advanced. She has most likely died by now.
This disease -- appendix cancer -- may have been rare back in 1962, but it is not rare now. However, my doctor will always see it as rare. Why? Because there is no treatment available in the network.
Even if you have the most common cancers, the best, most effective, most cutting-edge treatments may not be available in-network. As a matter of fact, they probably won't be, as insurance companies are very slow to approve new treatments. Like thirty years slow. Will your doctor know about them? Will he tell you about them?
What treatments your doctor offers are driven by insurance.
Denials and reimbursement strategies: How they shape medical care
We know that denials allow the insurer to not pay for that treatment, in that particular case. Of all people who receive insurance denials, only one-half of one percent ever appeal the decision.
If the patient is ambitious enough to appeal, and get the denial reversed -- still no problem for the insurance company. They will simply reduce reimbursement on the other end. Once the lifesaving treatment has been performed, Acme Insurance will delete codes, bundle codes -- whatever it takes to reduce reimbursement to pennies on the dollar.
Don't worry about Acme Insurance. Even if you make them pay for non-routine payments, they won't pay much.
We see that the insurer has many ways of reducing their operating expenses: Delay, deny. And, when you have to pay, don't pay much. Reducing expenditures is a perfectly natural practice for a for-profit business.
However, there are larger implications. Insurance drives care.
There is a perfectly good treatment for liver tumors called Y90 radioembolization. It involves introducing radioactive microspheres directly into the liver, via the hepatic artery. This treatment improves symptoms and prolongs life for people with primary liver cancer, and liver metastases from breast cancer, colon cancer, ocular melanoma, and neuroendocrine tumors.
Recently, a large medical facility had to stop offering this treatment for most cancers. Insurers vigorously denied it, or paid so little for it that the provider was losing about $10,000 per treatment. They couldn't even cover the cost of the microspheres.
Consequently, people won't be getting this treatment anymore at this medical center. Soon, other medical centers with have to stop offering it, too. Unless, of course, they bill Medicare enough to make up for the appalling shortfall from private insurance.
Is this acceptable to you? What if your mother needs this treatment, or she will die? If she is denied, I can write an appeal for her. However, if the treatment is no longer available, there is nothing that I can do.
What would the Insurance Warrior do?
I usually refrain from pontificating about the larger insurance issues. However, more and more people are asking, "What would you say, if Barak Obama asked you what to do about health insurance?"
First, Barak Obama should ask me about health insurance. Not only have I thought deeply about these issues, but I see up close and personal how insurance company decisions play out in the lives of real doctors and patients -- including myself.
As it stands now, the insurance company gets to decide whether or not we will get the astronomically expensive lifesaving treatments that the insurance company is going to have to pay for. This is insane.
Peer-to-peer reviews are performed by the same Medical Director of the insurance company who denied the treatment in the first place. He is not a peer, and it is not a review. The last independent review that I got mixed up with was for a technologically complex cancer surgery. The "independent review organization" was a chiropractor with a post office box in Lubbock, Texas. With an independent review, there is no accountability, no input, no recourse, and no oversight. They could uphold 100% of insurance denials, and nobody would ever know.
No matter how much you pretty it up, and try to give the illusion of due process -- this is the world's worst conflict of interest.
I would take both the research about which treatments to offer, and the decision on when to approve them -- out of the hands of the insurance company. Most of the treatments denied by insurance companies have more scientific proof of their efficacy than the treatments routinely offered by the insurance companies. They have no track record in making good decisions about treatments, it needs to be taken out of their hands.
A truly independent entity would be tasked with finding the treatments most likely to give a good outcome -- regardless of whether the doctor or facilty was contracted with anybody's insurance company.
Then, so that all doctors don't quit the profession, and all medical facilities don't go broke -- I would task my independent entity with setting fair reimbursements for medical services. I would also outlaw fraudulent and deceptive practices designed to unfairly reduce reimbursement.
We don't expect insurance companies to operate at a loss. Why should we expect the medical providers who are saving our lives to do so?
Give Barak Obama a call. I am eager to talk to him about health insurance.
Happy and peaceful Insurance Warrior-ing,
Laurie Todd
********
My new book is here! It's a CD!
It answers all of your questions about how to write an appeal!
It includes a sample appeal for you to edit and use!
"The Sample Appeal: More Insurance Warrior Wisdom"
Find the new CD/book at www.theinsurancewarrior.com/thebookandthecd.html
SAVE $5 on the book/CD set.
Background: Peptide receptor radionuclide therapy (PRRT) is an important new treatment for patients with metastasized neuroendocrine tumors (NET)
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