The Good News From Our Citizen Journalism Project

One of the big questions in the debate over the future of journalism is whether the Internet can foster a new alliance between professional reporters and citizens who have a high interest or expertise in a particular topic.

Here at the Huffington Post Investigative Fund, we're seeing signs that the answer is yes.

Several weeks ago, as one of our first investigative projects, we set out to explore how insurance companies decide which claims to approve or deny. Regulators, lawmakers and policy makers seem to be in the dark about that important aspect of the health care system, since insurance companies generally are not required to disclose their rules, methods or records about claims.

Investigative Fund reporter Danielle Ivory wrote about this lack of available data and invited citizen journalists to help us investigate. Hundreds of people volunteered. And they've already helped us extend and deepen our journalism.

Many have volunteered personal tales about their dealings with insurers. Others are health professionals and insurance insiders with direct experience in the claims process.

Some readers pointed us to patterns of inequity in the system. That led us to focus on two aspects of the health claims system -- the growing antagonism between many therapists and insurers over mental health benefits, and how victims of sexual assault can get entangled in the system.

Says Ivory: "I never expected such an extraordinary response. The readers obviously took the assignment very seriously. We started to notice small-scale patterns right away. It's invaluable to have such an enthusiastic community helping us out."

Ivory's article about a woman who was raped, took anti-HIV drugs as a preventative measure and then could not get coverage became a national phenomenon. Aside from thousands of commenters and bloggers fueling robust debate around the Web, the victim also appeared on CNN and Headline News. Our accompanying mini-documentary on mental health benefits has been viewed by thousands of people on YouTube.

Stay tuned for more coverage. We have several teams of citizen journalists digging through data and documents and helping us research other ideas that emerged from the larger group.

Aside from story leads, we've been receiving many individual tales that taken together may illustrate some of the gaps and weaknesses in the current health care system.

For example...

Shirley of Houston, now posted overseas, exposed a personal struggle with her newborn child. Because the child was born with some minor birth defects on her feet and hands, the family's health insurance provider refused coverage. The defects, they said, were a pre-existing condition:

We had individual insurance policies, and one for my daughter, but the policy did not cover "pre-existing" conditions, nor was there any affordable rider we could purchase that would cover. Any birth defect is a pre-existing condition.

As it worked out, the state ended up picking up the cost as part of Medicaid since I had to leave work to take care of her through the surgeries. People should be aware that babies are not being covered, and that in some cases it's the taxpayer that ends up footing the bill.

On the mental health front, Charlene Melton of Morrison, Ill., suffered from minor depression after losing her father. She since has been denied health insurance consistently. The reason, she was told, is that she was previously treated for a mental health condition:

After my father died I had some depression issues and sought help from a local mental health clinic. You know the type, they charge on a sliding scale and government subsidies cover the rest. Well, I later found out that the funding depends on the level of patients they have, so they have to diagnose you within 2 or 3 visits or lose their funding. As I was told, "We're not here for bored housewives, we're here for people with real disorders." They diagnosed me bipolar and explained to me that since I had both highs and lows (I like to call that a range of human emotion) I was bipolar as opposed to unipolar, which I learned isn't even a word. So I took the pills for about 6 months and they did no good and I just found a local grief support group instead. Flash forward 4 years, my husband decided to become self-employed and we shop around for health insurance and I get rejected by every company. Finally an independent insurance broker told me that because I had been diagnosed with bipolar disorder and it is considered a lifetime condition, I will never be able to buy private insurance. I'm blackballed.

A Chicago nurse, who wants to be known only by her initials, A. G., told another story about the consequences of seeking therapy:

I am a 30 year-old family nurse practitioner in Chicago. I have worked in the HIV/AIDS field for 3 years. I am a very healthy adult woman with no medical problems. Last winter, I was stuck by an HIV+ needle at work and suffered temporary anxiety from this. Because of that, I continued to work full time and sought very short-term therapy for the anxiety, which has since resolved. Just this week I was denied medical insurance by Blue Cross Blue Shield because of that situational anxiety, and because I stopped going to therapy (which was no longer needed). I stopped going to therapy because I was improved, it was $600/month, and I had no insurance (I still don't)...

And finally, a woman from Miami, Fla., who also wished to remain anonymous for fear of "insurance company retribution" tells the all-too-persuasive story of patients running into trouble when filing claims for expensive cancer tests and treatments. After being denied treatment, her family appealed the claim and won but the delay was enough to do a lot of damage.

After a suspicious cat scan, my oncologist ordered a pet scan to further investigate the possibility that my original cancer had metastasized. Aetna, my insurance co, declined to approve the pet scan. We fought it for THREE months until they finally relented. There was a tumor, and, because it had been measured by the earlier cat scan, we know that it grew during those three months. The tumor had grown and wrapped itself around the vena cava, becoming inoperable. Due to the three month delay, my survival stats took a big hit since they never got to remove the darn thing. Now I get pet scans twice a year to monitor my continuing wellness. We continue to have to fight the insurance company every single time -- the last time it again took three months to get the approval, so Aetna continues to put my life at risk. My husband and I pay over $14,000 a year for this awful insurance, and then I have to hear our president cite Aetna as one of the "good guys."

The Huffington Post Investigative Fund will continue to hold its magnifying glass close to health insurance companies. If you are an insurance insider -- or a citizen who would like to join our team, submit a tip or suggest an idea -- please fill out the form below. We look forward to hearing from you.

 

Follow Adam Clark Estes on Twitter: www.twitter.com/adamclarkestes

Comments

[thetanpecan]

No healthcare system is perfect or will be perfect. But our current one is seriously flawed. Cases like these demonstrate why health care should not be a for-profit business. What they also demonstrate is the way we continue to tell the poor and/or the sick, or anyone who doesn't fit perfectly into an underwriter's profit-making algorithm, that they aren't worthy of receiving healthcare, all in the name of "not wanting to turn into a socialist country."

Continuing to let people get sicker and poorer because of healthcare is not very patriotic if you ask me.

[Patricia Hanrahan]

The claim denial problem is both tragic and huge. Researchers estimate that “health maintenance organizations (HMOs) across the country adjudicate more than 250,000 appeals (of claim denials) annually for their privately insured enrollees alone.” - according to Gresenz and colleagues in a very influential journal, Health Affairs, 2002.
There are also estimates that when sick people manage to pull their energy together to appeal claim denials over half the time they are successful, but that most people are too sick and demoralized to try.

[henryberry]

My particular concern is crime and corruption in the public and private sectors of the legal system. I became concerned about this from experiences in the Fairfield County, Connecticut, legal system upon filing a criminal complaint against lawyers at a prominent local, Bridgeport, corporate law firm with incontrovertible evidence of the theft. The first measure of the people in the state's attorney's office was to get an illegal wiretap on my phone as a preliminiary criminal measure in a scheme to entrap me and defame me while at the same time subverting my complaint by forgery, perjury, witness tampering, and other crimes.

I'd like to hear more about similar cases of what I call programs of incrimination by law-enforcemnet officials. Some of these can get pretty complex. I'm looking eventually for legal-system activism which can help keep individuals from falling victim to such vicious programs. This activism would be a mirror image of the Innocence Project. The Innocence Project works to get people out of jail who have been wrongly convicted. I'd like to see activists work to keep individuals from getting wrongly convicted in the first place. There's little done in this area. Even the most dedicated of lawyers and most honorable of judges don't seem to be able to do much about this.

A HuffPost form like the one above would be helpful in gathering material on and giving focus to this matter.

[iblogleft]

What happened to our "Share this" Button?

[splathrop]

This is great. Keep up the good work, and let's see more like it. Too bad it can't substitute for the newspapers the internet is putting out of business.

In case after case, the computer revolution has been sold as a methods and capabilities story, but the most important piece has turned out to be the market revolution which ensues. When information was inherently scarce and expensive, competition on the basis of quality and service prevailed. Cheap information availability makes information-based marketing the key competitive axis. Quality and service don't even figure in the equation until after online commerce has occurred.

The toll of industries and institutions suffering damaged markets includes stock brokerage, the travel industry, typography, graphic design, music, movies, photography, book selling and maybe book publishing, the library, broadcast news, and newspapers. No doubt there are many others, and more to come--all trying to figure out how to keep going while the internet tears out their commercial underpinnings.

We need to figure out soon how to evaluate the difference between Schumpeter's creative destruction, and just plain destruction.

[Patricia Hanrahan]

The most frightening thing about these claim denial stories is that there are thousands of people like this, whose health and even survival is threatened by greedy insurance companies that deny claims to increase their profit.