Friday, July 31, 2009

Overcoming the Perpetuation of Inaccurate Information

One would think that all it would take to overcome the perpetuation of wrong information would be to provide accurate information. Apparently it's not that simple.

For some time now I have contributed to a variety of HPV healthboards answering questions about HPV for the fearful, the newly diagnosed, those in shock, the occasional friend or family member and all to frequently those with what I call the leapfrog mentality. The people who obtain a piece of inaccurate information and then leapfrog that information from post to post to post. The result? The repeated dissemination of inaccurate information which is detrimental to everyone involved.

Even when corrected, they persist in spreading false information apparently oblivious to the potential damage. In some cases it is not false information as much as a false belief. An example of this is perpetuating the falsehood that HPV related cancers are "rare". This brings along with it another belief, that because it is "rare" it is something that one need not be worried or even concerned about. As a result, women fail to get the recommended screenings or overlook symptoms until in some cases it is too late while remaining blissfully ignorant to the fact that HPV is being connected with cancers affecting more bodily parts and organs at an alarming pace.

Even doctors fail to recognize the very real threat from this virus. Just as the connection between HPV and cervical cancer was dismissed over 25 years ago, the connection between HPV and other cancers such as anal are still minimized and/or dismissed completely by many doctors today.

I am now going through treatment for a second time for invasive anal cancer. No one goes through the Nigro protocol (named after the man who developed this treatment for anal cancer over two decades ago) twice, but I am. The reason no one goes through it twice is because typically this protocol involves chemotherapy in combination with radiation. The dosage of radiation is usually 5,000 to 6,000 cGy (centigray = absorbed dose of radiation). On my last journey into hell with this treatment the pain was so unbearable I was forced to stop treatment after only 3,000 cGy. Now, 18 years later and only because the treatment had be halted early am I able to undergo this protocol again otherwise, it would have been an immediate colostomy.

I have made many friends along the way who are going through or have gone through treatment for anal cancer. By the way, 90 to 99% of anal cancers are HPV related. I have also heard more horror stories than I care to recount regarding the diagnosis of anal cancer in these individuals. Far too many of them were dismissed by their doctors as having "bleeding hemorrhoids". For many who received second opinions and their disease was caught early, they have survived. For others, by the time they received a second opinion it was to late, and for still others they weren't diagnosed until severe bleeding from the anus brought them to the emergency room.

Far too many colorectal surgeons are unaware of the HPV connection. Far too many choose the "most common" explanation for rectal bleeding and leave the diagnosis at that, a bleeding hemorrhoid. Even when presented with an HPV related anal cancer, some colorectal surgeons provide one of two options: wait for it to become invasive or, get a colostomy. What happened to something in the middle? There is a surgical procedure referred to as a wide local excision. This involves surgically removing the affected area along with a wide margin around it in hopes that the cancer is contained within those margins. In my case, by the time I got to a surgeon who could and would perform this surgery, my in situ (localized not yet invasive) cancer had become invasive. I actually had three surgeons all of whom told me that upon visual inspection of the area "everything looks normal". It was only because I insisted that this be biopsied that the diagnosis of squamous cell CIS (carcinoma in situ) was made.

The fourth surgeon who finally performed the wide local excision knew the minute he examined me that something was wrong. He even informed me that he believed it had become invasive. He was right. I asked why it was so easy for him to see what three other surgeons did not. His answer - a trained eye. So what does this say for the other three surgeons I had seen. Well, the main thing it tells me, is that they need more training! Beyond that, it tells me that they and most other physicians need more education regarding HPV.

Farrah Fawcett brough anal cancer to the world's attention back in May when Farrah's Story aired on television to an audience of over nine million viewers. While nothing was mentioned about HPV at least anal cancer came out of the shadows. My goal, is to make sure it never disappears back into those shadows ever again. Anal cancer is on the rise, and has been for some years now. I have to wonder how many people are undiagnosed or shall I say misdiagnosed with bleeding hemorrhoids and so are not included in the statistics.

Here's another statistic. If a woman has CIN (cervical intraepithelial neoplasia also caused by HPV and resultant cervical cancer if left untreated), she has a 37% increased risk of developing AIN (anal intraepithelial neoplasia) and anal cancer.

The increasing knowledge of HPV by doctors is painfully slow and anal cancer is not as rare as people may think. One thing is painfully true however; if you are the one diagnosed with anal cancer then "rare" becomes irrelevant when you're on the wrong side of the statistics regardless of the numbers!

Wednesday, July 15, 2009

The Science of Medicine - The Facts of Medical Coding

There are numerous systems developed within the medical community in order to maintain continuity and consistent understanding amongst physicians and other healthcare providers. This includes insurance companies.

Two of these systems are the CPT (Common Procedure Termology) coding and ICD-9 (diagnosic/diagnosis) coding. The CPT coding involves your office visits, procedures whether in the doctors office or in the hospital including surgical and any other type of visit/procedure you may have. Diagnosis coding pertains to your specific diagnosis. While there are some ICD-9 codes which are labeled pertaining to a specific body part, there are "nonspecific" codes which can be used. Frankly, this only adds to confusion and sometimes insurance denials so it is important that physicians or more specifically their billing department codes correctly.

Coding errors as they are routinely called occur more often than they should. When my daughter was a toddler, she had to have tubes placed in her ears because of recurrent ear infections. This was done for both ears. When I received the EOB (Explanation of Benefits) from the insurance company they had only paid about $650 of a $1500 bill. Because of my many years in Practice Administration and overseeing billing and coding, I quickly recognized that the surgeons office had incorrectly coded the procedure. While they did have the correct code for that procedure, what they failed to add was the "52" modifier to the end of the code indicating that this was a bilateral procedure. I contacted the surgeons office, had the claim resubmitted with the correct code, and the insurance paid another $650. Had I not picked up on this coding error, I would have been responsible to the physician for the remaining balance of $850 instead of $200. Many people don't question these things by calling their insurance comany and often just pay the balances they are billed.

Sometimes, more significant situations can occur with errors in diagnosis coding. Individuals can be declined for life insurance policies because a prior doctor's visit was coded as having congestive heart failure instead of congested sinuses. This is a stretch between these two diagnoses, but I think you understand my point. Cancer policies are common now. Years ago there were no such policies. These can be financially life-saving if an individual has the unfortunate experience of being diagnosed with cancer after having purchased one of these policies.

However some patients with carcinoma in situ which is the same as a Stage 0 cancer are being denied their benefits under these cancer policies. This comes from a confusion between the diagnosis of "IN3" intraeptithelial neoplasia Grade 3 and carcinoma in situ or CIS. Intraepithelial neplasia can be used when relating to the cervix (CIN), vagina (VaIN), vulva (VIN) or anus (AIN). There is no difference between a diagnosis of for example a CIN3 and a carcioma in situ. As I mentioned above regarding coding. Individuals who are being denied their benefits under these policies need to get with their physicians and get this corrected. Your physician needs to correct and send follow-up to your insurance company (health insurance) and cancer insurance company and utilize the correct code, which in the case of the cervix, is 233.1.

There is no reason, why coding errors should be the cause of individuals being denied benefits they so deserve, especially, in my opinion, when dealing with cancer!

If you check the ICD-9 codes there is one code which covers CIS/CIN3 and that code is 233.1

Thursday, July 9, 2009

Some People Just Can't Deal With Being Wrong!

It's unfortunate, but I suppose a fact of life, that there are those who simply cannot accept being corrected, even when it is presented in a non-threatening and essentially kind way. You know the ones. They become defensive, attacking and sometimes downright mean. Perhaps this has to do with needing to been the "queen bee", jealousy or envy, its anybodys guess.

Opinions are opinions and facts are facts. When facts are misrepresented, especially regarding the topic of HPV that upsets me. There are far to many sites with erroneous information and far too many people who have just been recently diagnosed with HPV themselves and suddenly they're experts because they've spent a few weeks searching the internet. These people can be dangerous because they present information as fact when often it is far from it.

I'm not talking about the folks who are compassionate and truly caring and want to help others through providing information which they themselves experienced via a procedure etc. And there are those, who provide legitimate researched accurate information. These are the ones who should be applauded for taking time out of their day to answer posts and sooth the soul of another human being!

I have spent months and years rearching HPV not only for my own knowledge but in researching my book. I have spoken to MD's, PhD's, DO's, pharmacists, pathologists and cytopathologists to name a few. I didn't just pull my knowledge off a few web pages. I have a 22 year history with this virus myself and am quite familiar with its ramifications. Even those who have dealt with HPV themselves and have quite a significant knowledge base still don't know everything. There are some areas in which, despite the significant research I've done I am still lacking but at least I can admit that. I'm still learning about viral loads relating to HPV and several other topics such as foamite transmission.

A situation came up recently on a healthboard. I attempted (privately) to let someone know that her current understanding of a particular situation was in fact incorrect. The only word I can think of at the moment to describe her is - COWARD. Could she maturely respond to me - no. Instead she had to go running like a little ninny whining to complain. She didn't have the guts, or the knowledge quite frankly to address the issue head on. She was going to believe what she was going to believe and that was that! Fine, but don't go spewing this incorrect information to dozens of other people! It is irresponsible individuals like this that only contribute to the misperceptions, confusion and dissemination of inaccurate information which only makes the situation worse. The topic of HPV is confusing enough, believe me.

I'm actually quite surprised because this particular lady is quite well versed regarding HPV. Apparently however, she doesn't like to be challenged. Well that's just too bad! Higher level of knowledge or not she should at least be able to admit that perhaps, just perhaps she got it wrong.

I have received a tremendous amount of (sincere) support from individuals on this particular site and they know who they are. They will never truly understand the strength that their support has given me and how much I appreciate each and every one of them. They also understand however, that I am currently dealing with my own physical and emotional hell of recurrent invasive anal cancer and upcoming radiation and chemotherapy. As such, I am emotionally very fragile at this particular point in time and have no trouble admitting that - who wouldn't be under the circumstances. However, I find it reprehensible, not to mention downright mean for this individual (and one other) to do what they have done. It speaks not to compassion but to defensiveness, not to concern but to a lack of it, and not to the most important thing of imparting accurate medical information, but to continuing to disseminate what SHE believes to be accurate and is not.

While contributing to this site has allowed me to impart my knowledge and understanding of HPV to others (which is my main goal) and while I would love to continue to do so, I cannot do so under the circumstances which have been created at this time which is truly a shame and in my opinion, a loss for everyone including myself.

These types of individuals are an impediment to progress because they prefer to remain stuck in the past. Stuck in old definitions, stuck in old research conclusions, stuck in old information, and stuck is the last thing anyone needs to be if they are going to be open-minded - they're mutually exclusive. Understanding of HPV evolves daily and one needs to be open-minded to deal with it. These folks need to do us all a favor and climb out of the sandbox! Stop behaving like a pre-schooler who just picked up their jacks and is going home. On the other hand, maybe they should go home, and stay there!