Approximately 150 cancer patients from the U.K. pack their bags each year for a two-month stay in the U.S., seeking treatment at one of its 26 proton therapy centers.

Many experience distress during this time away from home, feeling displaced from family and friends as well as a sense of culture shock and worry over time away from work and the gravity of their disease.

But for these patients, the choice to pursue proton therapy requires traveling abroad because no such facilities are up and running as of yet in their native U.K.

Since proton therapy facilities are few and far between, patients who live in the U.S. may share those same sentiments over having to leave their homes and jobs to seek treatment in different parts of the country.

And unlike the British government, which will pay for the costs of lodging and loss of work in addition to treatment, American insurers will only spend on the latter, leaving the burden of other financial obligations on the patients themselves.

“Simply staying in a hotel room for two months is one of the most difficult aspects I’ve seen in trying to provide proton therapy access to some of my patients,” Dr. Andrew Chang, medical director of pediatrics at the California Protons Cancer Therapy Center, told HealthCare Business News. “They want to come, their insurance may cover, but there are no resources available for those ambulatory services.”

The situation is even more complex with child patients, where the costs of accompanying family members, missed school and care for siblings add to the burden of travel.

Consequently, many children eligible for proton therapy take the conventional route of radiotherapy, where there is a greater chance of incurring side effects that may have a permanent impact on their development and adult lives.

Mitigating a lifetime of problems
Proton therapy has boomed in the last 15 years, growing from three facilities to 26 in the U.S., with eight more under construction and plans in the works for another 15.

Three facilities are being built in the U.K., and all over the world countries are in the midst of constructing and expanding access to proton therapy.

For children in particular, this could mean a welcome opportunity to reduce the occurrence of side effects incurred from conventional radiotherapy, which studies show could induce secondary cancers decades after treatment. More immediate concerns involve irreversible, long-term effects that radiation can have on development and growth in young children, such as growth disorders, neurocognitive toxicity, ototoxicity with impacts on learning and language development as well as renal, endocrine and gonadal dysfunctions.

“For a child, if one leg stops growing two inches lower than the other leg, that’s a lifetime of hip problems and back problems. The child might not be able to run and will require many orthopedic surgeons to fix that problem,” says Chang. “If we can avoid that radiation exposure by using protons, we’re sparing them from a lifetime of growth problems.”

The precise nature of proton therapy enables greater chance of avoiding these issues with treatment targeting the tumor while minimizing exposure to healthy tissue.

Yet, within this phenomenon, arises a misconception that proton therapy is side effect- free, a notion that experts are quick to dismiss when consulting patients.


“Whenever we give radiation, there are going to be side effects,” says Chang. “The goal is to minimize those or eliminate some specific ones, but it’s not like you can get zero side effects from treatment.”

Scott Warwick, the executive director of the National Association of Proton Therapy, says the key point to remember is that the treatment itself is a form of radiation, just one that can be better administered.

“It’s still radiation. It’s not a new drug or treatment. It’s just protons is the best delivery method of radiation that’s available today,” he says.

Barriers
While experts agree that the U.S. has the best access to proton therapy, many people are still forced to pick up and travel long distances for treatment. For children, the situation is even more taxing as many of these centers may be lacking in resources necessary for the care of pediatric patients.

Beth Klein, president of IBA Proton Therapy in North America, says one reason for this is due to the fact that cancer among children makes up less than 1 percent of all oncology cases.

“Even with it being the leading cause of death in infancy among children in the U.S., it’s still very rare,” she told HCB News. “You need a mix of other clinical indications to justify the volume required to support a proton therapy center.”

The establishment of centers for children as well as adults is further hindered by infrastructure and time of construction due to the enormous size and cost of proton therapy systems.

“The machines are costly almost regardless of type and model,” Bill Hansen, director of proton marketing at Varian, told HCB News. “They are fairly large. You can’t just roll them into a center. You need to build the building around the equipment. It takes anywhere from two to three years to get a project completed to the point where you’re treating patients. Capital and time are probably the biggest barriers today.”

The challenge for pediatrics is more complex with children having special equipment needs and requiring the presence of child life specialists and social workers.

The administration of proton therapy requires patients to remain still, and although innovations such as pencil beam scanning have greatly reduced the length of an actual proton treatment, getting an anxious child to remain motionless can be a challenge.

One possible solution is the presence of anesthesia equipment.

“No patient can move during treatment, and it’s easier to tell that to an adult than a kid,” Abram Gordon, executive director of the Cincinnati Children's Hospital Pediatric Proton Center, told HCB News. “Sometimes, they need to be put to sleep so they don’t move. The list of services they need is kind of long and not every proton therapy center is geared to providing those needs.”

Further technological needs, according to Klein, include a dedicated H&N couch to accommodate all child sizes; a gantry rolling floor to ensure patient and staff safety; and specially designed nozzle accessories to enhance beam performance and reduce delivery time for use against shallow tumors, a common occurrence in pediatric cancer patients.

IBA has partnered with Philips to provide the Ambient Experience for their proton therapy systems, which aims to diminish patient anxiety by making the treatment environment less intimidating.

“It offers 10 different ambient themes, using colored lighting, sound and wall projections,” Klein says. “This provides a friendly soft, non-threatening environment and greatly improves the patient experience.”

In addition to that, she says the Ambient Experience has also allowed some proton facilities to reduce the use of anesthesia in pediatric patients by as much as 30 percent.

But the needs of child patients extend beyond just the technology, requiring the presence of child life specialists who can explain the treatment and procedures on a level that children can comprehend.

To assist in this matter, many vendors and providers are engaging in creative innovations to help children feel more comfortable in their environment. Varian, for instance, has created a comic book that helps children view proton therapy as an actual superhero.

“One of the things we’ve recently done as a vendor is introduce a new comic book hero, Proton Man, that actually is directed at teaching both parents and kids about proton therapy,” says Hansen. “We’re using a comic book to literally tell them the story of a child going through it and the superhero being protons that are going to save the day.”

Experts agree that understanding of the role that proton therapy can play in pediatrics is the main factor that determines its success and growth.

“There are only a handful of us who have used proton therapy for a length of time more than four or five years,” says Gordon. “That does make it a lot more difficult. For me personally, as more centers come up, I hope that we see more centers for pediatrics to offer training programs for new physicians to come out and learn the techniques to use this tool.”

What is being done and what is expected
Although access to proton therapy is growing for pediatric patients, Dr. Rahul R. Parikh, assistant professor, medical director of the Laurie Proton Therapy Center at Robert Wood Johnson, has examined utilization patterns and illustrated how much work remains to be done.

In two separate studies, he and his colleagues looked at outcomes from a large national observational database, the National Cancer Database, to highlight a lack of access to proton therapy as well as discrepancies in the profile of which patients receive it. One study looked at pediatric medulloblastoma, a brain tumor that starts near the base of the skull, and another study looked at all central nervous system tumors -- both ideal indications for the use of protons, particularly in pediatric patients.

They discovered that while patients from families with more favorable socioeconomic backgrounds were more likely to receive the treatment, access in general is still extremely limited. In the pediatric central nervous system study, the researchers put forth their own guess as to what accounts for the underutilization.

"There are currently too few proton therapy centers, making travel to a center impossible for most families. Due to the prohibitive cost of proton therapy, the current delivery model consists of large, multi-room centers and consolidated care in metropolitan tertiary care centers," they wrote.

One way those challenges are being met is through the emergence of single-room or two- room proton centers. Parikh and his colleagues in New Brunswick, N.J., utilize a Mevion proton therapy system, which is geared toward providing smaller, single-room proton gantries at a much lower cost than the four- or five-room centers.

“This novel approach to compact proton therapy delivery has allowed us to expand access to our adult and pediatric patients suffering from complex cancers when traditional forms of radiation are not possible or unsafe,” says Parikh.

Researchers have estimated that of the 60 percent of cancer patients in the U.S. undergoing radiation therapy, 20 percent could likely benefit from proton therapy.

Yet, lack of awareness, combined with the factors mentioned above, have stifled this figure from being reached with only less than 1 percent undergoing the treatment.

“In addition to the improved quality of life for the patients due to reduced side effects, as well as the reduction of secondary cancers down the road, many proton therapy experts believe that the cost of doing proton therapy may be less over the life of the patient than it is for radiation therapy in some cancers,” says Klein. “Those results are now just beginning to be reported.”

With these results has come greater intrigue within the health care community, prompting higher expectations in market value as well as investments and funding.

“With the increased number of centers in the U.S., that will open up access to those patients who previously have not been able to travel due to being in a single parent household or from an economic standpoint,” says Warwick, who adds that only 32 percent of Americans have regional access to such centers. “That’s one of the things that I get excited about.”

As these centers continue to grow in numbers, Hansen expects the needs of pediatric patients to be met right alongside those of adults.

“We think that as these proton therapy centers get placed around the world and it continues to grow for the adult population, the pediatric population kind of rides along that, meaning that as we put one in, many of these centers have a dedicated room to pediatrics,” he says.