Friday, June 8, 2012

The winning appeal

Dear Sir,

I am a 28-year-old female PhD student at UC Davis with a carotid body tumor (paraganglioma) in my neck. The bulk of the tumor was surgically removed on March 21, 2012, but the remaining tumor was found to be malignant. Anthem’s continued recommendation to the University of California to deny coverage of the recommended post-surgical treatment must be resolved immediately to give me the best chance for a full recovery.

To avoid further spread of the cancer, my doctors have recommended Proton Beam Therapy (PBT), which is the most effective, least damaging, and ultimately lowest lifetime-cost treatment for my case. My doctors have referred me to M.D. Anderson, a world-renowned center for PBT, and recommended I begin treatment between four and eight weeks of my surgery date. (Nine weeks have now passed.) However, Anthem, acting on behalf of the University of California, has denied my request (and M.D. Anderson’s appeal) and offered an inferior, higher-risk treatment, Intensity Modulated Radiation Therapy (IMRT), instead. PBT has an estimated cost of $160,000, compared with IMRT costs of $50,000 to $100,000.

I have requested this treatment, and Anthem and the University of California have denied it on the following grounds:
  • Anthem has not seen any medical studies that show that PBT is as good as other treatments for my condition.
  • PBT treatment is “investigational” for my case.

My tumor is so rare that there is no standard course of treatment, other than to follow the general approach of eradicating the tumor with radiation therapy.  Because of the rarity of this cancer, there have never been and there will never be a sufficient number of cases to perform a study of the relative benefits of differing radiation therapies.  However, there is substantial study (which I cite below) on the damage radiation causes to healthy organs and tissue, especially in parts of the body such as the neck where the tumor area cannot be irradiated without also irradiating delicate, nonhealing, and crucially functioning parts of the body.

At M.D. Anderson, one of the nation’s foremost comprehensive cancer treatment centers, I was seen by Dr. Garden, a graduate of Johns Hopkins Medical School and Board Certified Radiologist with 24 years of medical experience and practice in Radiation Oncology.  Dr. Garden specializes in the treatment of cancers affecting the head and neck and has published 42 peer-reviewed original research articles addressing the treatment of various head and neck cancers.

According to research by Dr. Garden and others, conventional radiation treatments damage the tissue surrounding the tumor, in part because the radiation release is greatest at surface.  Proton beams, by contrast, can be much more finely controlled, both in width and depth, allowing doctors to more accurately target the tumor area.  Thus, the proton beams can deliver higher doses of radiation to the tumor area with less collateral damage to the surrounding healthy tissues.  By pursuing PBT instead of IMRT, I will have a lower risk of developing secondary cancers resulting from the radiation, permanent neck stiffness resulting from the scar tissue, damage to my brainstem and spinal cord, the loss of salivary glands near the tumor, and subsequent major dental problems. If I receive IMRT, these side effects are likely to negatively affect my productivity and quality of life for decades.

Despite the proven benefits of PBT (Allen, 2012; Yoon, et. al., 2010; Mock, 2004, among others), and even though the therapy is approved for the treatment of more common forms of cancer which require very precise irradiation, Anthem determined that the treatment would not be covered because it is considered “investigational” for head and neck cancer due to insufficient clinical data. Again, please note that it is impossible for “sufficient clinical data” to be amassed for any treatment with my rare condition.  Anthem will only cover the conventional radiation treatment, risking my short and long-run health and likely increasing my long run health care costs.

However, unlike Dr. Garden, who recommended PBT, as well as Dr. Allen Chen at the UC Davis Medical Center who strongly supports his recommendation, the Anthem reviewers who recommended the University of California deny coverage have no experience with cancers of the head and neck. Neither the consulting doctors’ credentials nor their reports are disclosed, in violation of Anthem’s own policy.  Instead, the denial letter inconveniently offers to disclose the pertinent information within 30 days of any request.  The insurance appeals process has taken over 4 weeks already, and I simply cannot delay my treatment to wait for the report. The longer I wait before starting treatment, the more likely it is that cancer cells have spread to parts of my body outside the radiation field.

In this document I will prove the following:
  • PBT is the best therapy option for me and is medically necessary in my specific case.
  • PBT will leave me with fewer serious side effects than IMRT, both during treatment and over the rest of my life. The relevant side effects are: acute mucositis, acute and chronic xerostomia, second malignancies, and serious damage to critical organs including my submandibular (salivary) glands, oral cavity, and brain stem.
  • Leading head and neck radiation oncologists have recommended PBT for my case.
  • There is a great deal of evidence supporting PBT for head and neck cancers.
  • PBT will result in lower health care cost for me over my lifetime.
  • For my particular case, PBT is no more “investigational” a procedure than the IMRT therapy that Anthem/UC is offering.
  • The specific doctors Anthem consulted in making the decision to recommend denying me this treatment are not qualified to make this decision.
  • Other major insurers cover PBT for neck cancers.
  • Anthem has violated their own procedures in denying my PBT treatment.
  • Any further delay in approving this treatment reduces my chance of beating this cancer.

I appreciate your time and attention to the careful review of my urgent expedited appeal. I know that Anthem Blue Cross strives to work with the University of California to deliver the best coverage to students. According to my school website, “UC SHIP benefits are designed with the well-being of students in mind, to optimize each student's opportunity to complete his or her education in a state of good health, while reducing the impact of medical costs.”  I believe the evidence presented here will bring to light the crucial issues in my situation which make PBT the only option to ensure I have the best chance at a long healthy life.


Isabel Call


  1. Dear Isabel,

    This morning while sitting at Peet's in downtown Davis I opened the Sac Bee and found you and your headline on the front page. I couldn't believe what I was reading; eerily I felt like I was reading about myself, but I was not shocked to hear of your awful battle against your health insurance company. Sadly, this is an all too familiar fight and I'm proud you are another success story!!!

    I am thrilled that you got your approval for coverage at MD (but so effing mad that you had to fight so hard). I understand entirely how scary it is to think that there are so many others out there who do not have the resources to fight in that way. I hope that right now you can focus all your energy on getting comfortable and staying strong through your therapy. I have been battling leiomyosarcoma since 2003 (when I started graduate school at UCD) and in the last few years have been through similar tragedy and triumph, writing with my husband a dissertation on the necessity of out-of-network services all while enduring surgeries, radiation, chemotherapy, etc.

    While I went through radiation therapy in 2010 I would repeat the "Forrest Gump" prayer as I called it, "Dear God, make me a bird so I can fly far, far far from here". Whatever it takes to get you healed and stronger I hope that you can return to your graduate studies soon. I imagine that you, too, will have a renewed sense of advocacy for those who do not have what we have. Sometime in the future I would love to meet you and swap tales.

    I teach high school Biomedical Science at River City HIgh School in West Sacramento and have always been driven to teach students to be critical thinkers and to be advocates for their own health. As you can imagine I am even more passionate now. When you are done at MD (I don't suggest doing this now because it will just be frustrating) I suggest reading a book called Deadly Spin by Wendell Potter. Have you heard of him? He has a blog, too. He is our man!

    Monday morning I head to Stanford to start a clinical trial for another chemotherapy drug. I'll pray for you (I started expanding that practice a bit more, too, after realizing how useful it was) and bask in the a bit of your glory at keeping the health insurance bastards from deciding our fates!

    with love,
    Clare Wiley

  2. Please let me know how things husband has carcinoid in his neck as well as other places

  3. Very, very persuasively argued and masterfully written. Bravo!

  4. The radiation oncologist, a specially trained physician who heads the treatment team, sets an individualized course of treatment with the help of the medical radiation physicist, who ensures the delivery of the precise radiation dose. A dosimetrist, under the supervision of the physicist, calculates the exposures and beam configurations necessary to deliver the dose prescribed by the radiation oncologist. A highly trained radiation therapist positions the patient on the treatment table and operates the machine. The radiation therapy nurse provides the patient with information about the treatment and possible adverse reactions.

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