Last September, New Jersey resident Jerson Hsieh was hit with a double whammy. First, he was diagnosed with nasopharyngeal cancer, a type of head and neck cancer in which malignant tumors grow deep inside the nasal cavity, requiring a long, costly recovery period.
Then, he received a form letter from his health insurance company, Aetna, stating it would not pay for the life-saving proton beam therapy recommended by Hsieh’s doctors at Memorial Sloan Kettering Cancer Center.
Aetna’s rejection was based on its claim that proton therapy is still experimental for all but a few forms of cancer, despite now-widespread data suggesting it now should be considered standard treatment for a variety of cancers.
Without coverage from Aetna, the family now faces an enormous bill. Hsieh is on disability leave.
Hsieh was told by cancer specialists that traditional photon radiation therapy could result in blindness and a loss of hearing and taste, because it bombards areas of the body affected by cancer and often inflicts damage on surrounding healthy tissue and body parts.
Proton therapy, on the other hand, delivers ionized protons in the form of a pencil-sized beam precisely to a diseased area, minimizing damage to surrounding areas. It was approved for the treatment of cancerous tumors by the U.S. Food and Drug Administration in 1988, and in 2001 Massachusetts General Hospital treated its first cancer patient at its new Northeast Proton Therapy Center.
Because nasopharyngeal cancer resides so close to the brain, ears, nose and throat, the traditional gamma ray bursts from photon therapy could cause massive damage to a patient’s head and neck, according to radiation oncologists.
Aetna’s policy states that it covers proton therapy for cancerous tumors at the base of the skull and spine, as well as for pediatric cancers but labels it experimental for all other types of cancers.
“Our decisions are based on clinical studies and scientific data,” Aetna said a statement provided to NJBIZ. “Aetna covers proton beam therapy when there is reliable evidence from clinical outcome studies that proton therapy is safer and more effective than standard photon based approaches. ... For many conditions, this is not the case.”
The insurer declined to comment on the Hsieh family’s case.
Aetna’s policy of not covering proton therapy in most cases may have a profound effect not only on the Hsieh family but on a statewide and national level . The Connecticut-based insurer covered more than 68,000 people who live and work in the state and several hundred more in the unsubsidized individual market at the end of 2016, according to the state’s Department of Banking and Insurance.
Nationally, Aetna covers roughly 22.3 million. It is the third-largest insurance company in New Jersey in terms of members covered, not including those who work out of state but live in New Jersey, which is among the top 10 states in the number of people who are afflicted with cancer.
Meantime, Aetna is not alone in not covering proton therapy in most cases. Most private health insurance companies contacted by NJBIZ have similar policies. Medicare and Medicaid are among the few exceptions. The number of cases in which cancer patients were denied coverage for proton therapy has grown. A website dedicated to them, http://allianceforprotontherapy.org, highlights the testimonials of hundreds of cancer patients in need of proton treatment.
Dr. Steven Frank, a radiation oncologist and medical director of MD Anderson Cancer Center’s Proton Therapy Center in Houston, said in an interview that overwhelming research has clearly demonstrated the efficacy of proton therapy for a wide array of cancers.
MD Anderson long has been advocating that it be covered by insurance companies when recommended by doctors. The biggest problem, Frank said, is that insurance companies routinely change their definitions of what is and isn’t experimental treatment.
“We see insurance companies’ policies changing beause they don’t want to pay for [proton therapy],” Frank said. “What’s happened with insurance companies is that we’ve seen that there are alterations in their definition of ‘medical necessity,’ where they start adding different terminologies which drives what they consider investigational and experimental.
“We’ve gone to insurance companies and communicated the effectiveness of proton therapy, but the updating of their policies are lagging. It is concerning.”
Dr. Henry Tsai, a radiation oncologist at Somerset-based ProCure Proton Therapy Center, New Jersey’s largest proton beam therapy center, agreed.
“I’m not sure who calls it experimental,” Tsai said. “Proton therapy has been around for over 20 years, and it’s been used to treat cancer patients 20 to 30 years because it’s a very precise type of radiation treatment. It’s especially effective for head and neck cancers, such as nasopharyngeal and parasinus cancers, because proton particles don’t pass all the way through the body and cause minimal damage to surrounding tissue.”
Since opening in 2012 ProCure has treated a total of 3,000 patients.
“We’re expanding the benefits of proton therapy to various types of cancers,” he said. “Improvements to it are being made every year. It’s definitely not experimental, and it’s only a matter of time before it becomes mainstream.”
The American Society of Radiation Oncologists, which has done extensive research into the efficacy of proton therapy, has recommended that nasopharyngeal and other head and neck cancers be covered by private insurance, as has the National Association of Proton Therapy in Washington, D.C.
“Proton therapy is simply the most technologically advanced delivery method of radiation to cancerous cells that exists today,” said Scott Warwick, executive director of the National Association of Proton Therapy, in an email. “This is attributable to the physical characteristics of protons as they interact in the body, resulting in the delivery of curative doses of radiation to tumors while lowering doses of radiation to healthy tissues and organs. For this reason, proton therapy should never be classified as experimental, investigational or unproven. There should be no debate about its efficacy.”
In New Jersey, Dr. Rahul Parikh, medical director of the Laurie Proton Therapy Center in New Brunswick, which is part of the RWJBarnabas Health, agreed.
“Proton therapy should not be considered experimental for head and neck cancers that are too challenging for standard radiation options,” Parikh said in an email. “We have compelling evidence from multiple series on various cancer sites that have demonstrated reduction in secondary effects of radiotherapy with the use of proton therapy.”
Warwick also pointed out several academic studies on proton therapy:
In 2014, physicians from the Mayo Clinic conducted a meta-analysis of 41 paranasal sinus and nasal cavity cancers, which consistently indicated better results for patients who had undergone proton therapy as opposed to photon treatment.
Two abstract papers published in 2013 by MD Anderson Cancer Center – one of the pioneers in proton therapy treatment – found there was a more than 58 percent reduction in the use of gastrostomy (feeding) tubes in proton patients when compared to photon patients.
And, just last year, the National Comprehensive Cancer Network, which is often referenced by payers when determining their coverage policies, expanded its support for the use of proton therapy in several head and neck cancers.
In its guidelines for the treatment of head and neck cancers, the NCCN found patients with malignant diseases of the nasal cavity and paranasal sinuses who received proton therapy appeared to have better outcomes than those receiving photon therapy; proton beam therapy may be associated with greater normal tissue sparing without sacrificing target coverage; and was associated with less dependence on opioid pain medication and gastrostomy tube placement as compared to intensity-modulated radiation therapy.