More On the Chemo Bath… direct from survivor Laurie Todd

Meet Guest Blogger Laurie Todd... Laurie is an amazing author, teacher, and insurance strategist.  In 2005, she was diagnosed with late-stage appendix cancer. Laurie was told by her oncologist, “There is no treatment for your disease. And, even if there were, they (meaning the HMO) won’t pay for it.”  Laurie is not the type to just sit there idly and take that.  And she sure as heck wasn’t going to allow herself to die because her insurer didn’t want to pay for something.  Not only did Laurie find a doctor who performed what some consider a radical yet lifesaving treatment, she also persuaded her insurance company to fully cover the cost. The cost for this extensive surgery and chemotherapy totaled $345,000 (and that was in 2005). Her share? $9.

 

Fast forward to today, Laurie Todd, Appendix Cancer Survivor Extraordinaire, is also known as THE INSURANCE WARRIOR.  She works with patients to get their insurance companies to cover life saving medical procedures and so far, Laurie has won more than 85 appeals.

 

I “met” Laurie through ColonTown, a Facebook community of colorectal cancer survivors, where  I posted information on Chemo Baths.  BTW, Laurie refuses to call this procedure by it’s nickname… It’s called hyperthermic intraperitioneal chemotherapy (HIPEC).  In any case,  the information Laurie shared on this site was incredible…. after all,  she credits the fact that she is here today, 6 years later, because of Dr. Paul Sugarbaker, cytoreductive surgery and HIPEC.  This saved her life!

 

Laurie says this….

“There are a few things one should understand about the HIPEC. First of all, there is no such thing as HIPEC without cytoreductive surgery (CRS) — it is a combined modality treatment. The main reason why so many of us do so well is the surgery, not the HIPEC. This is a surgery which can go on for 12-20 hours — painstakingly stripping out the abdominal wall (peritoneum) and cleaning out the entire abdomen.

A true cytoreductive surgery is equal in complexity to separating conjoined twins. We (the patients) do well because of the skill and dedication of that particular surgeon.  The HIPEC is merely the icing on the cake — eradicating the microscopic cells that remain.  Without a complete cytoreductive surgery, HIPEC is of no use.  The sooner in the disease process that we get it, the more likely that we will do well.  This is a curative treatment.

Secondly, cytoreductive surgery is nothing new. It was pioneered by Dr. Paul Sugarbaker in 1979 when he was Chief of Experimental Colon Cancer Surgery at NIH.  Dr. Sugarbaker alone has performed over two thousand of these surgeries, and documented his outcomes in 683 peer-reviewed medical journal articles.  Thousands of patients with appendix cancer, colon cancer, peritoneal mesothelioma, pancreatic cancer and ovarian cancer have had this treatment, with excellent documented outcomes — all over the world– performed by various surgeons.

Another woman I recently met named Norah from Akron, Ohio had her CRS/HIPEC by Dr. Sugarbaker at NIH, as part of a clinical trial back in 1985. Her local doctors had told her to get her affairs in order.  26 years later, Norah is still alive and cancer-free.  I’m not sure why the media likes to shorten the number of years that this surgery has been performed and studied in the U.S. Perhaps it makes it sound more “controversial,” and makes a better story.

I believe there are many reasons why CRS/HIPEC has not gone “mainstream.” Probably the most important reason is that insurance companies have routinely denied it, and doctors around the country who treat cancer patients have not been quick to refer patients for it — partly because it is not always available locally, or in-network for the insurance company.

Over the past ten years — I am guessing because of the Internet — patients have begun finding out about this treatment on their own, and making their way to the surgeons who perform it. As we fight insurance companies time and again for this treatment, it becomes a bit easier over time to get it paid for. The same is true of other lifesaving treatments for which I have written appeals — patients are leading the way.  My passion is persuading insurance companies to practice evidence-based medicine. I come with mountains of scientific evidence. Often, there is no scientific evidence for the treatments that insurance companies routinely offer.  I am here to say that the insurance company does not always know what is best for us.

I once compared two medical policy statements of two different BC/BS companies for HIPEC. One policy was negative — HIPEC is “experimental.” The other policy was positve — HIPEC is “standard of care.” Guess what? Both of the opposing medical policies used the same thirty-two scientific articles to prove their point. What does that say about medical policy statements? The emperor has no clothes.

If I believed what the Chief of Oncology at my HMO said, I wouldn’t be here right now reading these scientfic articles.  Those of us with appendix cancer dearly wish that our first surgery had been the most definitive treatment — cytoreductive surgery with HIPEC. I wish that also for those with colon cancer, ovarian cancer, and peritoneal mesothelioma. If I keep being the pest out here … maybe some day a few of us will get referred sooner in our process.”

4 comments

  1. ilene says:

    Robym, you are truly a modern day erin brokowitz. Keep spreading the word of extraordinary people making an impact. This is an important story for all diseases and patients.

  2. Susan Udelson says:

    OMG. I love this blog entry for so many reasons, but particularly because it brings home two vital points: (1) As Robyn has said time and time again, keep doing research on your disease and find that specialist who believes in your healing; don’t ever let a doctor tell you that you are “done”; and (2) You absolutely cannot let the “tail” of the insurance company wag the illness “dog”. If you don’t have the time and health to fight yourself then find someone who will do it with/for you. We appealed several scans, chemotherapy drugs, and biologic agents for Alan. Although it was tough going, we prevailed on every single occasion. In one case we had our doctors “testify” via conference call with the insurance company physician panel, which absolutely was key to our success. Don’t be afraid to get your doctor’s office involved, whether it be research or getting on the horn with the adversary. Understand how your insurance protocol works for inpatient/outpatient services and read the Clinical Policy Bulletins related to any denials before starting your research (including all citations used to formulate their position!) Call your insurance company and ask for a case manager to be assigned to you – they can be vital to getting information quickly or clearing up situations that arise. Frankly, I could go on and on about this but I will stop here!

    • Robyn says:

      Sue, thanks so much! You are a passionate and educated advocate and that’s what it takes to succeed with insurance companies. You are amazing!!!!!!!! Thank you!

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