Most of you are reading this because you or someone you know has a child with pediatric cancer and has been denied coverage for proton therapy by the parents’ health insurance provider. Presented here is a compilation of information gleaned from e-mail messages to and from Brotherhood of the Balloon (BOB) members (Thank you Proton Bob for sharing this with us).

 

COMMON REASONS FOR DENYING COVERAGE FOR PROTON THERAPY:

 

General: Proton therapy has been around since the early 1950’s and has been used in a hospital setting since 1990 at Loma Linda University Medical Center (LLUMC).   There are many studies now available by disease proving protons are superior for pediatric cases especially brain and spinal tumors. Getting provider approval for proton therapy depends in large part on the patient’s type of health insurance, age and state or residence. PPO’s (Preferred Provider Organizations) are more likely to cover proton therapy than HMO’s (Health Maintenance Organizations). Some states have better appeal procedures than others. Most have independent review boards that have the power to overrule an insurance company’s denial. The message that comes through the e-mails we’ve seen is: DO NOT LET THE INSURANCE COMPANY WEAR YOU DOWN. KNOW YOUR RIGHTS AND KEEP AT IT UNTIL YOU GET APPROVAL.

 

Here are some of the more common reasons for denial of coverage:

 

Proton therapy is not experimental or investigational. It has been in use for over 40 years, since treatments began at Harvard University in 1961. The means of delivery may change as techniques develop, but the therapy itself is established as efficacious, efficient and preferred in light of the side effects associated with alternative therapies. The efficacy of this treatment has been proved to the satisfaction of the FDA and has its stamp of approval. It is an approved treatment by AARP, Medi-Cal and Medicare- none of whom accept experimental treatment of any kind in their coverage.

 

Intended as an alternative to surgery and other forms of radiation, proton therapy is target-specific, delivers more radiation to the tumor, does minimal damage to normal tissue and has minimal side effects. World wide, more than 50,000 patients have been treated with proton therapy for cancer and many other diseases.

 

Medicare (Bulletin 406, 3/31/97) and Blue Shield of California (Policy 4.01.04, 2/27/97) [see text below] declared proton beam radiation therapy as non-investigational in 1997. Both organizations are conservative and do not cover procedures deemed “experimental”.

 

The definition of “medically necessary” is quite broad. The Code of Federal Regulations (CFR) defines “medically or psychologically necessary” in part as follows: “The frequent, extent and types of medical services or supplies which represent appropriate medical care and that are generally accepted by qualified professionals to be reasonable and adequate for the diagnosis and treatment of illness…” [32 CFR 199.2(b)]

The key here is to get a “letter of medical necessity” for proton therapy from your child's oncologist.

The following is quoted from Blue Cross of Cal Policy 4.01.04:

      “Proton-Beam radiation therapy is NON-INVESTIGATIONAL in the treatment

      of malignancies. Proton-Beam therapy may be MEDICALLY NECESSARY for

      the treatment of:

                              Intraocular melanomas

                              Pituitary neoplasmas

                              Small arteriovenous malformations

                              CNS lesions

                              Head and neck malignancies

                              Prostate malignancies

Treatment with proton beam radiation therapy should consider the characteristics absorption in a specific target volume and location that would likely result in superior clinical outcomes as compared to conventional (photon~ x-ray) or electron-beam radiotherapy”.

 

This may be the toughest type of claim to refute. One was is to show the benefits of proton beam therapy and note that there are no proton facilities within the network. You can also point out that TRICARE (formerly CHAMPUS) regularly approve PBT, even though it has its own Intensity Modulated Radiation Therapy (IMRT). It may also require that the proton doctor and/or the child's oncologist write a letter to the carrier’s insurance stating the medical necessity for treatment. It also may require the proton docto and/or the child's oncologist to speak directly with the carrier’s insurance review doctor explaining the medical necessity for treatment.

 

Take a look at the pictures and treatment plans we have here on this website.  

• Ask the health plan what guidelines they used to formulate the denial and request a copy be sent to you. You have a legal right to this documentation.
• Submit your appeal documentation stating clearly the reason for the requested service. Health plans make their coverage decisions partially based on the documentation you provide so it’s in your best interest to provide complete information up front. The more factual, substantial information you can provide the better. Research on the internet. Print out any information that supports your position. Keep copies of all medical documentation.
•  Follow up with the health plan if it hasn’t responded in a timely manner.
• In many cases your  child's primary oncologist can provide the medical documentation you need. Encourage your child's oncologist to discus the denial  directly with the health plan physician reviewer (medical director.)
•  Know the levels of appeal available, but let’s hope you never have to use them. If your appeal is not approved on the first try, request a second appeal. Most plans also provide a third level of appeal. If all levels of appeal are overturned, consider filing with an Independent Review Board or the State Insurance Commissioner. At this point you may or may not require a lawyer. Be persistent, factual and adhere to all requests and requirements of the health plan.
• Do not bypass any steps in the appeals process. If your first level appeal is denied, do not jump right to an independent reviewer. Some insurance regulations and even some independent review mandates require the policy holder to fist file an internal appeal with the insurance carrier. This is a prerequisite to getting an outside agency or even, in some cases, winning in court.
• You may also consider discussing the denial with your companies benefit area. While it is not the usual practice for the employer to request a service to be covered, it does and can happen.  Call your Human Resource department and ask to explain your situation and ask for their help.