New Website to Collect Health Insurance Horror Stories

10/02/2009 2:03 PM |

Nataline Sarkisyan

Nataline Sarkisyan [pictured], 17, died in December 2007 from liver failure, a complication from a bone marrow transplant she received to treat her leukemia. Her insurance provider, Cigna, had refused to pay for a transplant until hours before the girl’s death, calling the procedure experimental and outside the scope of coverage. “They took my daughter away from me,” her father said at a news conference.

The story moved Bryan Harris, when he read about it on MSNBC; he was furthered affected weeks later when he saw an opinion poll in which a majority of voters responded negatively to a “public option” as part of a healthcare system overhaul. Now, he’s translating his sympathy and outrage into action.

Nataline, of course, is not alone: healthcare horror-stories, from the insured and not, are ubiquitous, popping up in outlets ranging from the daily papers to Michael Moore’s Sicko. Recently, Harris has been working to create a forum where some of these stories can be collected—where all the Natalines can be heard: this week, he launched his project, The Health Insurance Victims Project: Remembering the Victims of Health Insurance Companies. A simple WordPress blog, it aims to be “a place where loved ones of the victims can post their stories,” Harris wrote in an email, “on the condition that the person must have died as a direct result of being denied care.” He also wants the site to function as hub for information on the public option.

So far, the site features only two stories: Nataline’s and that of Dawn Smith, an aspiring playwright in Atlanta and the current cause célèbre of MoveOn.org. (Ms. Smith requires treatment for a brain tumor that Cigna—them again!—won’t cover.) It also includes an entry about the recent Harvard study that found an estimated 45,000 Americans die every year because they don’t have health insurance.

Hopefully, Harris’ site will grow with stories, inspiring change through poignancy and sheer scale. But his example alone should serve as an inspiration for all of us. We should all be doing something, anything—even if it’s just starting a blog or calling our elected representatives—in an effort to affect the healthcare debate. Because, as Nataline’s story shows, the health insurance debacle in this country isn’t just a matter of untreated colds, or even bankrupted families. Real people are really dying.

15 Comment

  • The Nataline Sarkisyan case was tragic for all involved and raised many issues about coverage of experimental treatments and scarcity of organs needed for transplants.

    In this particular case, Mr. Sarkisyan

  • From Cigna
    With regards to Dawn Smith

    We have not refused to cover Ms. Smith

  • Wow, that was fast. Do you have Sarksiyan/CIGNA on a Google alert? You wouldn’t be this Chris C., would you?

  • Sorry about the disappearing html… This Chris C.: http://illnessandinsurancehell.blogspot.co…

  • Much of the health care reform debate centers on the powerful insurance companies. Whistle blowers are often pushed aside. Money talks and power often wins. This is the story of two women and their fight against one of those companies.
    The story Jo Joshua Godfrey tells seems like fiction. Sadly, her story of how her life was changed by a powerful insurance company is true. Her story starts in 1992 when she first fell ill with cancer.
    In 1992 Mrs. Godfrey was a member of CIGNA health care insurance and a patient at one of their California clinics. A little-known fact is that at the time CIGNA owned 29 clinics in California.
    When Godfrey first started having trouble in 1992, the CIGNA doctors told her she had bronchitis. That diagnosis was stated repeatedly even as the woman grew more ill. For two years she visited the clinic hoping that the doctors would find the cause of her breathing difficulties, but to no avail. She was desperate enough to ask for her medical records so she could visit a doctor outside of her plan. An insider from CIGNA gave them to her, she says.
    In the end Godfrey ended up in a hospital at 9 p.m. one evening, and met a doctor she met through the Yellow Pages. This doctor who scanned her records, and within 30 seconds she had her diagnosis — cancer. The proof was within the pages of her records, the doctor told her. It took her two years to discover the truth. She again had to fight to have surgery. CIGNA wanted her to visit another one of their doctors who again said she didn’t have cancer. She fought harder.
    Her surgery took place in September 1994. Her surgeon told her that she had a very rare type of cancer, with only 1 per cent of this type of cancer she had originating in the lung. “CIGNA said I wasn’t a candidate for surgery,” she says, adding how the tumor was choking her, closing the bronchious in addition to being very close to the heart. That was the cause of her having so much difficulty breathing.
    CIGNA did not want to pay for the surgery that had saved her life, Godfrey says. Her doctor had to write down orders as she left the hospital for what was needed for her to stay alive. He said because the cancer originated in the lung, there were many tests to determine if she had cancer elsewhere, including brain scans and bone scans. “I was told CIGNA wouldn’t want pay for it,” she says. CIGNA documented the tumor was benign and would need a follow-up X-ray.
    She went to the CIGNA’s headquarters in Glendale (where care is administered to 600,000 people enrolled in CIGNA) in her hospital gown and slippers where she was met by the risk manager and a lawyer. The risk manager informed her there would be no visits to any outside doctors.
    “It was a horrible experience,” Godfrey exclaimed. “Why bring a risk manager and a lawyer?”
    Godfrey’s father was with his daughter as the risk manager started to tell Godfrey what would be allowed.
    “If you don’t treat my daughter, I will lift you and throw you through the glass windows and onto the street,” he said.
    Her father, angry already that his daughter’s life had been in jeopardy, put his foot down. That wasn’t enough. Godfrey didn’t have time to play around, she went to the media. All of a sudden she was allowed to have the needed treatment and CIGNA agreed to pay for it. That’s what they told the media at least. Godfrey thought that the insurance nightmare was over, when in fact she was just in the beginning stage.
    The bills were not paid. But CIGNA was ordered by the state to pay for those doctor bills.
    Knowing the problems that she had, Godfrey ordered that the medical records of her family be released so an outside doctor could examine them.
    It was a positive move. Her 14-year-old daughter had been having headaches. The doctors at CIGNA had told Godfrey for years that nothing was wrong, but again that wasn’t the truth, Godfrey recalls. Godfrey’s daughter had a diseased bone that was pushing towards the orbit of her eye, and without surgery she would go blind. Her surgery was performed a month after Godfrey’s tumor was removed. She can see today because of it.
    The Godfrey family had one more shock. Mr. Godfrey survived the Vietnam War where he was granted a Purple Heart, but had a spot on his lung. The spot had been found during a 1992/1993 physical that was part of his job. At the time he was employed as the Chief of police at the Department of Veterans Affairs in Sepulveda, California, as well as a detective at West L.A., Assistant chief in Palo Alto/ Menlo Park and finally chief of police in Las Vegas, Nevada. He took the X-ray to his CIGNA doctor who told him nothing was wrong. The fact is that the doctor refused to look at it. The doctor did another X-ray, and told him there’s nothing wrong with him.
    “It’s probably just a smudge,” Godfrey told me the doctor said.
    In late 1993 he underwent a complete physical at CIGNA and told he had a clean bill of health. They were wrong. He was already very ill and needed to have the tumor monitored every 60 days.
    At one point during this mess Jo went to get the clinic pharmacy to get her medication, knowing that her co-pay would be $2. She was told she had to pay much more than that, around $68. When she stood her ground about paying the standard price she claims that the pharmacist came out of the drug area to slap her, screaming that she was “nothing but trouble for our company.” A CIGNA doctor recommended that Godfrey would have to pay full price. “They just this to torture me,” Godfrey recalls.
    During this period Godfrey’s oldest two daughters were in university at UC Santa Barbara. Instead of CIGNA assigning the girls a doctor in Santa Barbara they were given a doctor in Santa Maria, an hour and a half away. When the family asked how this could happen state regulators wrote CIGNA a letter to give the girls a closer doctor. CIGNA then assigned them doctors that no longer worked with the insurance company’s plan.
    Godfrey was through, she wanted to get a new carrier. Lawsuits have been filed, not for the money but to get CIGNA to stop their policies that are killing people, in Godfrey’s opinion. “They forced me into binding arbitration, but I refuse to arbitrate with a criminal,” she says. She adds that CIGNA demanded from the arbitrator she would have to pay their legal costs.
    The case was dismissed because Godfrey wouldn’t agree to arbitration.
    At one point she was told there was another tumor in her lung and she needed surgery. Godfrey fought for a second opinion. That doctor told her that there was no tumor and had she had the surgery that CIGNA wanted to have, she would have died.
    Godfrey tells me that the doctor told her “you can’t lose any more of your lung or you will die.”
    After many hurdles today Godfrey is with Blue Cross and couldn’t be happier.
    “Blue Cross has always treated me right. I want to let it be known that corporations own our country, people have no voice,” she adds.
    The good news is that the Godfrey family is now healthy and have health care that they can trust. Godfrey wants health care reform to become a reality.
    The Godfrey’s story is not the only one coming out about the CIGNA doctors. Virgie Spence lost her husband when the same system couldn’t find out what was wrong with Bill. He had Stage 4 non-Hodgkin lymphoma and passed away in 2009, despite his diagnosis occurring in 1993.
    Mrs. Spence does not say outright that CIGNA doctors were trying to cut costs but she admits that for two years the CIGNA doctors could not find out what was wrong. Worried about her husband’s failing health she went out of network to The Simpson Medical Clinic in Santa Barbara in 1993. The first night at the hospital the ENT specialist gave the couple a preliminary diagnosis that was confirmed within three days by a biopsy. Those three days saved his life. He sadly passed away last year from a repeat of the same disease but he had 15 years of relative good health in between.
    At first CIGNA tried to not pay for Spence’s out-of-network bills, but after countless meetings the bills were paid. Once Spence was in remission the couple obtained a different carrier for their future medical needs.
    “At the end I wasn’t happy with the insurance. At a certain age they don’t seem to care for you. Your older, your health is failing.”
    I asked Mrs. Spence, who now resides in Las Vegas, what her views on today’s health care reform:
    “I’m for it. It’s simple, what we have now is not working for us. I am willing to try something that may work. No insurance is going to be perfect for everybody but something has to be done.”
    During their hardships with CIGNA Godfrey’s husband doctor Dr. Thomas Conklin left CIGNA. He sent the following letter to his patients:
    My involvement with HMOS within the last few years has allowed me to establish a warm rapport with many of you; but along with this rapport comes responsibility.
    Often during my HMO experience, the decisions I had to make which I felt were in the best interest of my patients were overridden by the bureaucracy. In good conscience, I cannot treat my patients in this type of environment.
    After much SOUL-SEARCHING, I have decided not to accept HMO-based insurance plans at this time.
    In my twenty years of practice at this same Northridge location, I have seen many changes. Northridge hospital has grown from a small community-based hospital to a medical center, serving an expanding, diverse population. Despite the changes, the needs of the people remain the same. Everyone deserves quality health care.
    When making future decisions regarding your family practice doctor, please consider me.
    I called his office and spoke to his office manager Michael who confirmed that this is indeed the letter that was sent to his patients.
    Mrs. Godfrey is committed to not allowing the big insurance company to get away with the hardships and possible deaths that are a result of their actions. She told me that some have asked her if she is afraid that by blowing her whistle loudly she could wind up dead. She chooses to take her chances and make sure her voice remains loud and strong.
    In an earlier report on Godfrey I contacted insurance company CIGNA with a request for comment. CIGNA spokesman Chris Curran told me via email: “Because of HIPPA regulations, we are unable to discuss the details of Ms. Godfrey

  • The doctors have you by the throat and can charge anything they want. That’s the way it is in the USA. A friend of the family had a heart attack few years back cost him $200,000, with no health insurance. A broken arm at the elbow requiring outpatient surgery is $18,000. One night in a hospital is $2000. eye cataract surgery is $8,000. Detached retina surgery/treatment is $30,000. Who can afford this except the very rich? I wonder if the people who are opposing single payer system are aware of these costs.

    Also I would like to see how much doctors make in America vs in rest of the world. That topic should be put on the table.

  • Mr. Chris Curran of CIGNA has a lousy job. Let’s face it, he has to play cheerleader to a company with a long and tragic history of denying claims to some very ill people–the very people they were contracted to protect. My husband’s disability claim included.

    Not only that, but CIGNA then plays dirty when its customers try to fight back and get coverage. This from the company you thought was going to protect you when you became ill? Doesn’t seem to jibe, does it?

    As for a single payer system, we need it and we need it now. Unfortunately, most Americans don’t think about their insurance (if they are insured through their employer) since there’s not much else they can do with regards to coverage. You take what you can get.

    And, most of us don’t think about it unless we get surprised by a life-altering disease like my husband did when he was diagnosed with Multiple Sclerosis. That changes everything. And we never, ever thought CIGNA would deny his illness let alone his disability claim. Live and learn and then change what’s wrong. I invite you all to help. http://illnessandinsurancehell.blogspot.co…

  • This is a disgusting story. Surely there is a way to get people covered one way or another. People have the same issues with their property insurance too. I only recently found out that you may be able to lower your premiums by comparing stuff on sites like http://www.landlordpropertyinsurance.net

  • It is SO simple to get ALL Americans very inexpensive FULL coverage for ANY medical need with no pre-existing condition exclusions. Get rid of the for profit insurance companies that pay their criminal CEO’s hundreds of MILLIONS of dollars in obscene salaries and bonuses. They get this money through post claims underwriting and denial of justifiable services killing over 50,000 adults and 25,000 children EVERY YEAR in their need for greed. This is murder for profit and no one is doing anything.
    I almost lost my leg and died when Dr. Ed Lowenstein, medical director for Universal Health Care Inc of St Petersburg Florida denied payment of my claim AFTER APPROVING it 8 times in writing! I was in Thailand at the time and was approved for emergency service outside the country for $30K every year. Yet he denied my care which almost cost me my leg and my life!
    This is why a single payer plan would work, it would eliminate BILLIONS of dollars in CEO salaries and bonuses which would then go to paying for the medical care we are now being denied. We do NOT need these CEO Criminals, they accomplish NOTHING except misery and pain for their customers when they need help the most by sucking all the money that we need for medical care into their obscene salaries and bonuses. For my personal horror story, Google: domestic terrorism/gary’s blog and Google:

  • Health Insurance must return to it’s role as a profession, not a business. The health insurance companies continue to compensate their executives out of proportion to any known formula. This executive compensation

  • Obviously the Free Market REQUIRES “competition” we don’t have that with Health Insurance Cartels!

    We also don’t have a level playing field, we have a steep uphill fight with sick and injured players while they have all the professionals, they bribe the refs, they own the ball park and are starting with 100 points against us!

    So, what is it called when corporations run the government?

  • In regards to how much doctors make vs the rest of the country, it is easily porportional. Doctors are a needed profession in society, and their value cannot be underestimated. With this new insurance plan we’re simply bringing doctors down and hurting private businesses.

  • Hey! Thats very informative. Glad for many of the posts. I feel they were helpful. It is good to have sites with information rather than a bunch of junk. Spreading knowledge is a giving tool that is usually highly rewarding.

    Regards,

    Julie

  • I think this site will be useful for pointing out problems with health insurance as it is today.

  • Maybe not under the horror category, but I have a few examples of the incompetence of the system involving myself, my daughter, and mo mother and the hell we have been put through unnecessarily in just the last couple of years.
    First my daughter, ok, just 16, always perfectly healthy, no prior conditions. Well she was complaining of discomfort when breathing, and it wasn’t improving. Finally one Saturday, I say, ok, lets run up to urgent care , see if they can figure out whats going on. So, we do, nurse and doc take vitals and xrays, and are stumped. They start to wonder about anemic conditions, and thnk she should get some blood work done which they cant do.. huh? ok… Then they offer us an ambulance to the ER. Um, Scary! Really?? So, we dont take the ambulance, the ER is near so we drive over. Over 8 hours waiting, already like 10 hours without food and only water to drink. As an aside, just before we got there a man had a heart attack while waiting and they had to bring the paddles to the waiting area. Anyway.. fiiiiinally, we get in. Describe her symptoms and the have her try out a nebulizer thinking asthma, ok, sounds reasonable.. BUT, the nebulizer gives her no relief whatsoever. Doc says, well follow up with your GP and take this script for a nebuilzer. What? But it does nothing for her.. So, i Say wait a sec, just wait, we were rushed over here because urgent care said blood work should be done, and since we are here and since you cant find anything , how about ya do some blood work? Doc humors me, reluctantly, and does so, no abnormalities but low potassium. rare, but probably caused by having noothing to eat or drink in 12 hours..
    One of the nurses actually takes the time to think it over and comes up blank. Then it hits me, as once years ago I had a similar tho more drastic experience where iI thought I was having a heart attack because each breath hurt.. turned out to be a pulled muscle, muscle spasms when i breathed deep… So I say HEY wait a sec.. could it be just that, a pulled muscle??? nurse sayd. Oh.. hm.. why yes I guess it could be and such things take awhile to heal… So after seeing 3 docs and a handful of nurses. NONE could diagnose a pulled muscle????? So anyway… we go get something to eat, get the useless script, just in case, and go home. The issue eased up some.

    Then, I am in surgery for a total hysterectomy, due to my doc ignoring my complaints for YEARS, telling me my complaints are just about being in my 40’s, even tho i kept insisting something was wrong. Well after so many years of increasing complaining and me being in agony, she finally orders imaging work, and wouldn’t ya know I have an ovarian cyst the size of a damn football. Then I got rushed in and had a total hysterectomy. Well, my mother watching my daughter at this time, calls me in hospital my daughters breathing discomfort was not improving and so she took her to her GP. This woman determines that my daughter has a heart condition and needs to see a cardiologist. What?? Ok, I am in the hospital worried as hell. Soon as I get home, right in the door, I look up a cardiologist and set an appointment. So much for having time to heal and rest. So we go see this cardiologist who is wondering how the hell we ended up referred to him, but to satisfy the insurance , he runs tests, and more tests, and concludes that in fact there’s not a thing wrong with the kids heart AT ALL. no arrythmia, nothing abnormal in the least. He agrees with me that it was a muscle issue and the kid should do some stretching and exercise. My god, the worry and the hassle, and the cost….. for nothing but a pulled muscle!

    And my mother. Close to 70. Gets some new insurance, requiring a full check up. They look at her bloodwork, and declare , matter of factly that she has 3rd stage liver disease. What?? She feels fine, but they insist and send her home with a looong list of things she can no longer eat and set her up with a specialist for which an appointment is almost 2 months away. Again, alot of family worry and confusion, and poor mom hardly to eat anything but raw veggies. Oh they even get her to a support group for which some others were there that had this disease suddenly after getting new insurance. Anyway, after many more appointments and blood work ups it is determines she has no such liver disease in any stage. Perfectly normal working liver for her age.
    I mean COME on. It is insanity. Two family members out through hell for NOTHING. There is NO common sense in the system at all. Moms blood tests had some elevated levels of something because she took a good amount of ibuprofen the week prior for an achy shoulder. Thats all. They don’t take into account anything like that effecting blood? They don’t suggest a second test a week later requesting she maybe cool it on medications??
    I have no medical training of ANY sort, yet I knew in each of these instances that the doctors were just wrong. but you don’t KNOW really, and you cant be sure, and they scare the hell out of you, and then you are at the mercy of incompetent doctors and evil insurance companies.

    This is what has to stop, and it is these reasons that the costs are so outrageous . All the health care system needs is a little humanizing and good does of common sense and wisdom. And thats not expensive.