Insurance Coverage for Proton Therapy

SEEKING INSURANCE

Sorry, no pretty pictures here. Just serious discussion about getting insurance for proton therapy. If you call your insurance company to ask if they cover proton therapy for your condition and they say no, don’t take that as the last word. Think of it as the opening salvo only.

Given the complexity of proton therapy, it is usually more expensive than other modalities. Initial construction costs, continued maintenance and monitoring, bond and mortgage payments, a large staff and general overhead add up to a considerable nut to crack. Insurance coverage is the lifeblood for both proton centers and patients. In contrast, insurance companies naturally want to avoid paying for proton therapy, so they throw many barriers in the way, including:
1. Saying protons are not medically necessary
2. Claiming other less costly treatments are just as effective
3. Not including proton therapy in their list of approved treatments (Clinical Policy Bulletins)
4. Calling proton therapy unproven and experimental, in need of more studies.
5. Having a company policy of rejection, delay, and complexity, known as “bad faith.”


Despite these obstacles, proton therapy continues to grow and more patients are finding insurance coverage, up from one-third of cases to around two-thirds.. Planning and determination lead to the best results. In this essay I point out some helpful strategies. As usual, a more detailed account is available in my published books, and at some links that I provide.

First, your doctor must declare and extensively document that proton therapy is medically necessary and that any other modality would seriously threaten your health and livelihood. All proton therapy centers have deep experience dealing with insurance issues. At my proton therapy center, six full-time employees work all day long solely on insurance issues.

The website for Loma Linda University Medical Center (LLUMC) in California, typical of most proton therapy centers, states:
Offsetting the costs of proton therapy is a primary concern for both patients and LLUMC. This is why the Proton Treatment Center accepts insurance plans from 250 providers including Medicare and Medicaid. While most medical insurers will consider proton treatment on a case-by-case basis, our financial coordinators will provide further assistance in coordinating these sensitive financial matters. Our financial coordinators can assist you in working with your insurance company to obtain authorization. 


DENIALS AND APPEALS

If your insurance company turns you down, you can appeal the decision through several levels of consideration. Delay is one of their tactics, knowing that in treatment of cancer, time is of the essence. I find this to be a cruel policy by companies who put profit over suffering. So, don’t just accept their first response. If the insurance company realizes you are likely to pursue your claim vigorously, they may lessen their resistance.

Sometimes, a claim denial results from a coding or billing error resolved with a phone call. You should find out the reason for denying your claim. It may be something easy to resolve.

When you file an appeal, you may need to provide more documentation and add supporting evidence from your physician. Make sure everything from the insurance company is in writing. Keep copies.

If denied your appeal, you can request an external review. An outside reviewer will look at the case and decide if they side with the insurance company or if they side with you.

Ultimately, you can also turn to litigation. 


NO HELP FROM ASTRO

In other essays I discuss the competition between protons and X-rays (see COMPARISON). At this writing there are 40 proton therapy centers in the United States and 15 more in various stages of realization. Compare that to thousands of X-ray centers. With a membership of more than 10,000 traditional radiologists, the American Society for Oncology Radiation (ASTRO) wields considerable influence and clout. Government bodies and insurance companies look to them for advice. To traditional radiologists, proton therapy represents a threat. Even though they have some members who perform proton radiation, I believe that ASTRO deliberately throws obstacles in its way.

Early on, I think around 2009, ASTRO produced a study concluding proton therapy was no better than less expensive alternatives, i.e. x-rays. Because of this self-serving conclusion, Aetna, United Healthcare, and Cigna stopped covering proton therapy for most cancers. The study stated that the benefits of proton therapy when compared to other options is unclear and should not be used routinely on patients. They have backed off some from that position, turning instead to tactics such as faint praise (“Oh, proton therapy has great promise some day, after, say, another ten years worth of study.”)

To make things worse, the Journal of the National Cancer Institute then published a study saying proton therapy led to a modest reduction in side effects initially, but after one year was no different from x-rays. Insurance companies embraced these reports to deny coverage.

ASTRO is no friend to proton therapy. I go into this more deeply in my comparison essay (see COMPARISON). Despite subsequent favorable articles about proton therapy in ASTRO’s Red Journal, insurance companies continue to balk at offering coverage. 


MEDICARE

If you are old enough to have Medicare, you have a good chance of coverage. I know of one instance in which a patient changed from an insurance company that didn’t cover proton therapy to Medicare plus a gap policy to cover what Medicare does not. (Medicare typically pays 80% of the cost.) Then he got proton therapy. I have a similar arrangement, with my Medicare gap policy costing around $300 a month. That may seem steep until the medical bills come in, many of which can be astronomical. My proton therapy cost almost $100,000. A single (monthly) hormone shot can cost $7,000.

At the time of my initial prostate cancer, I had a zero premium advantage plan with United Healthcare that didn’t cover proton therapy. (In recent years I believe that has changed.) Old enough to qualify for Medicare, I joined a Medicare registry that will track me for the rest of my life to document the results of proton therapy. Every six months I have a blood test and an exam. (I describe this in more detail in the essay relating my personal experience. See: EXPERIENCE.)

Then, the proton center convinced United Healthcare to do two things. First, it agreed to cover the remaining 20% cost, and second it treated me as being in network, even though I was in Tennessee and my home is in Texas. My advantage policy had a maximum co-payment limit of around $4,800. That was my total insurance cost. (I also paid $3,000 for a non-covered treatment, and around $4,200 for travel, food, and lodging, making my total out-of-pocket cost around $12,000.)

Medicare coverage is administered by regional outside contractors called MACs (Medicare Administrative Contractors). Coverage can differ depending on where you live. Look for their Local Coverage Determination (LCD). Medicare provides for a separate federal appeals-review process in the event of rejection.  


WHAT YOU CAN DO

If you are too young for Medicare and have no insurance, you can consider looking for a clinical trial. Most times you still need to pay for the treatment, but sometimes not. Here is a link for an extensive list of clinical trials: www.clinicaltrials.gov. The last time I checked it showed more than 300,000 studies in fifty states and 209 countries. My search under proton therapy exceeded 700 studies.

Other actions you can take include:
- Filing a patient grievance letter
- Organizing a conference call between the proton center and your insurer
- Contacting your employer, as some employers can override insurance coverage decisions.
- Contact your insurance company and ask for information about how to appeal at a higher level or to another entity.
- Consider seeking help from one of the many nonprofit and for-profit entities that offer advice. Many states have health insurance consumer advocates.
- Talk to others who have had the same diagnosis and sought treatment with proton therapy.
- Search for success stories online about patients who used proton therapy to treat similar conditions.
- Share your story on social media outlets to publicize your efforts and locate others who may help you.
- Commence legal work.
- Check the laws in your state, as some states have passed legislation forcing insurance companies to cover proton therapy.

When I receive emails asking for advice, I make the following points.
1. Fight back. Be persistent. You will need the assistance of your doctor and other professionals.
2. If old enough, check out Medicare or a Medicare registry. 

3. Shop around for cost. Two centers I contacted providing the same treatment differed in price by $41,000.
4. Some centers charge the same for proton therapy as for X-rays. These include the two Mayo Clinic centers (Phoenix AZ and Rochester MN), the University of Pennsylvania, and the University of Maryland. One strategy to win your insurance company over might be to get your treatment at the least expensive proton center.
5. Go abroad. If you are paying for treatment yourself, foreign centers charge less. I almost went to Prague to the very excellent center there. They were going to charge $33,000. With travel and lodging, I estimated the cost to be $43,000, less than half of my lowest estimate of $93,000. 
6. Consider raising the cost by organizing crowd funding efforts, such as GoFundMe. 


TAKE LEGAL ACTION

Several legal actions have set precedents to force insurance companies to pay for proton therapy. Sometimes, patients raised funds from family members, received the treatment, and then sued the insurance company for reimbursement. In other unfortunate instances, the relatives of patients who died because of proton therapy denial sued the insurance company and reaped substantial awards. While the deaths were tragic, holding the insurance company responsible will advance the cause for proton therapy for others in the future.
Here are some considerations


Out of touch
In court many insurance companies appear haughty and high-handed. They may have acted in bad faith, a widespread practice where companies willingly do not pay, delay payment, or deny payment on legitimate claims. They think they do this with impunity, but when called out in front of a jury, their actions look terrible. 


Bad evidence
Insurance companies always say they base their policy on the latest scientific evidence, but in fact, they are woefully deficient in that area. They use old, out-dated studies or, perhaps, none at all. Around 2014 the precision of proton therapy took a huge jump forward with the introduction of pencil beam scanning (PBS). Many studies used by insurance companies predate PBS. The obsolete nature of their evidence leaves them open to legal challenges.

Claiming the lack of sufficient studies is another tactic used to deny proton therapy. I discuss that argument in my essay comparing proton therapy to surgery and X-rays (see COMPARISON). 


Poor practices
Often, the decision to deny is made by people who know nothing about proton therapy. Sometimes it is a clerk. For appeals, rather than a true peer-to-peer equality, you may have a pediatrician rather than a radiologist or oncologist rule on the efficacy of proton therapy. Rather than considering the case on its merits, decision makers simply look to the Clinical Policy Bulletins (CPBs) and rule according to corporate policy. Some suits claim that the insurance company acted in bad faith, meaning they deliberately and knowingly denied or delayed qualified claims. 


Illogical arguments
In a twenty-five million dollar settlement against Aetna, the plaintiffs pointed out glaring inconsistencies. Proton therapy, Aetna conceded, benefits children, (anyone under 19 years of age) and those over 65 years of age (covered by Medicare). But for ages 19-65 they call it investigational and experimental. This argument made Aetna look rather silly in court. Here is a link to a news article titled, “Jury delivers $25.5 million ‘statement’ to Aetna to change its ways:” https://www.cnn.com/2018/11/10/health/aetna-verdict-oklahoma-orrana-cunningham/index.html

Similarly, a legal case against UnitedHealthcare found they used outdated medical evidence, ignored contemporary medical evidence, and relied more heavily on actuarial calculation of risk pools.


Legal precedent
"It is undisputed among legitimate medical experts that proton radiation therapy is not experimental and causes much less collateral damage than traditional radiation. To deny a patient this treatment, if it is available, is immoral and barbaric."
This unequivocal statement from U. S. District Judge Robert Scola in Florida went viral in the legal and proton therapy communities. As more and more legal cases favor proton therapy, the case for its inclusion gets stronger and stronger. 



Medical necessity
Many cases boil down to the question of necessity. The courts pay attention to highly qualified doctors testifying that only proton therapy would give the desired result. To claim proton therapy is investigational ignores its thirty-two-year track record of success and thirty years of research prior to that. So denial must eventually get down to medical necessity. If X-rays can kill the cancer just as well, why pay much more for proton therapy? The answer is: X-rays cause more damage to healthy tissue and have worse side effects. In the long run, counting the cost of treating side effects and recurrence, any savings may be an illusion.

In the Aetna case, Dr. Andrew L. Chang was so effective in making the case for proton beam therapy that afterwards a jury member said if she ever had cancer, she would go to Dr. Chang for proton therapy. Dr. Chang testified, "Proton therapy is a well-established treatment for cancer and has been for decades....Nobody in the oncology community considers proton therapy experimental for the treatment of cancer."

Dr. Steven J. Frank, MD, a highly respected oncologist at MD Anderson wrote this in 2016:
Picture yourself as having just received a diagnosis of cancer. After the immense shock of hearing that diagnosis, you consult a doctor about the path that lies ahead. A medical team consisting of a surgical oncologist, a medical oncologist, and a radiation oncologist weigh the most recent clinical evidence to date, and prescribe proton therapy to treat the cancer. This seems like great news because proton therapy is a highly precise form of treatment that can specifically target and destroy cancer cells while eliminating unnecessary radiation exposure to surrounding healthy tissues. At that point, the anxiety over the cancer diagnosis and potential outcomes is tempered by having an established treatment plan, but suddenly, your insurance company slams on the brakes. With no reasonable explanation, you discover that your health insurance will not cover proton therapy. Or, worse yet, the company says the treatment—despite the guidance of an informed group of the world’s leading oncologists—is not “medically necessary” and is deemed experimental.”
See his full article discussing medical necessity here: https://www.ajmc.com/journals/evidence-based-oncology/2016/august-2016/proton-therapy-eliminates-unnecessary-radiation-exposure-and-is-medically-necessary 


LINKS

http://allianceforprotontherapy.org/
This is an organization founded to help get insurance coverage for proton therapy. They have both success stories and failures. Maybe they can help you. They had a campaign that said, “Tell Insurers: Fight Cancer, Not Me,”

https://www.proton-therapy.org/patient-resources/insurance/
This is the National Association for Proton Therapy. They have an extensive section on insurance coverage:

https://protonbob.com/member-resources/medical-insurance-help
This website for Brotherhood of the Balloon, pertains to prostate cancer including valuable information about insurance coverage.

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