Over the course of her 28-year career, Dr. Beverly Bell, medical director of the oncology program at inVentiv Medical Management, has watched children's cancer go from a disease with a 40% to 50% survival rate to one with an 80% to 90% survival rate. She calls acute lymphoblastic leukemia - a type of blood cell cancer and one of the most common types of childhood cancer - the success story of pediatric oncology.

"In the 1950s and 1960s, 4% of children survived with that diagnosis," she says. "In 2010, 80% to 85% of children in all risk categories survived and are cured."

But even though survival rates for childhood cancer have risen dramatically over the years, the diagnosis is no less devastating for parents - a good number of whom likely are your employees.

Acute lymphoblastic leukemia is "a devastating diagnosis," says Bell. "When you find out what you're going to have to do for the next two-and-a-half to three years to get through this, there's a huge period of uncertainty."

According to the National Cancer Institute at the National Institutes of Health, among the 12 major types of childhood cancers, leukemia and cancers of the brain and central nervous system account for more than half of new cases. About one-third of childhood cancers are leukemias.

In 2007, approximately 10,400 U.S. children under the age of 15 were diagnosed with cancer, and about 1,545 will die from the disease. Although this makes cancer the leading cause of death by disease among U.S. children age 1 to 14, cancer still is relatively rare among that age group. On average, one to two children develop the disease each year for every 10,000 children in the United States, according to NCI.

The great strides in pediatric cancer have been made largely through the use of clinical trials. Bell estimates between 75% and 80% of pediatric cancer patients are put on a clinical trial. It's what leads to cures, she says.

"That is their best hope," she says. "Treatment is not reinvented every time. It's a regimented approach where if you do this, you get that. Generally, if you put a patient who meets the eligibility criteria on [a clinical trial], you get a cured patient."


Power in plain language

Bell encourages employers to look at their plan language. "We've had a very difficult time explaining that ... employers could help patients - help the whole cancer cure effort - if they could have their plan language worded to support appropriate clinical research."

The problem is that most health plans don't cover treatment given in clinical trials because such trials are deemed "investigational" or "experimental." How those terms are defined under a plan can affect whether the treatment in the trial will be covered.

Additionally, Leah Malof, national clinical practice leader with Buck Consultants, says plans often will "exclude care that is in, say, stage three or four clinical trials. But not all language is that specific. You really need to look at all the variations."

So, the magic bullet for employers is in contracting with a health plan that comprehensively covers clinical trials as a way to treat pediatric cancer? Not necessarily.

Malof cautions self-funded employers to think very carefully before they consider amending their plan language to cover clinical trials for childhood cancers. One major factor to consider is the perception of discrimination. It would be very difficult to amend plan language to include pediatric cancer but not adult cancer, for example. "You would not necessarily amend your plan for a certain case," she says. "It's not just going to be pediatrics. You'd have to revise your 'experimental' language [overall], which is going to extend over many, many types of conditions."

Secondly, the financial implications of amending plan language to include experimental or investigational treatment could be huge. For self-funded employers with stop-loss insurance, "their stop-loss insurer may not reimburse the plan for experimental services such as clinical trials," says Malof.


DM and EAP supports

Still, there are several benefits employers can implement to help employees who have children diagnosed with cancer. On the medical side, "look for a disease management program that has specialty nurses and the subspecialty of pediatric oncology nurses," says Pamela Schumacker, RN, director of clinical operations and cancer solutions at Optum.

And because pediatric cancers, relative to adult cancers, are far less common, medical and clinical expertise tends to be more concentrated, so "access to specialized cancer centers or centers of excellence would be an important benefit," says Dr. Michael Rosen, senior national medical director at Optum, noting that a pediatric cancer diagnosis affects the entire family. "Often those family issues are of a behavioral health nature, so having a broad spectrum of behavioral health benefits and general support for the family can be of paramount importance."

Along those same lines, an employee assistance program - if it's well-promoted and employees and managers know about it - can be a valuable tool for employees with children facing this diagnosis. Not only can an EAP refer employees and family members to psychological or financial counseling, some offer health navigation services that can help guide parents through the health care and insurance system.

ComPsych, for example, offers a health navigation service with two components: a registered nurse to help with medical questions and concerns and a benefits specialist to go over the details of an employee's particular coverage.

Employees can call the benefits specialists to learn what the in-network facilities are for their child's treatment, confirm that all pre-certification and pre-authorization requirements are adhered to or ensure the prescriptions are covered under the drug formulary. On the back end, these benefits specialists can review medical bills and the explanation of benefits to make sure services are being paid properly according to the plan options. If there are any discrepancies or issues with the carrier, benefits specialists can arrange a three-way call with the employee, the carrier and the specialist.

"Having someone on the phone comes in very handy during fee negotiation," says Roxanne Szczypkowski, director of work-life programs for ComPsych. "We spend a lot of time doing that, and we've had some huge successes with being able to reduce $100,000 bills down to $3,000. And that's having someone on the phone, asking the right questions and having a champion to go to bat for you."

Because pediatric oncology services are concentrated, it's not uncommon for patients to have to travel for treatment. Historically, employers have only covered transportation costs for bone marrow and organ transplants. Bone marrow transplants can be a part of cancer treatment and "in those cases plans will generally cover transportation not only for the patient but a family member to go with them," notes Malof. "Those benefits typically range from about $5,000 to $10,000 for that transplant, and the family would have receipts and typically be reimbursed for those expenses."

Still, Malof believes employers could extend transportation coverage to other types of treatment - chemotherapy, for example - that require travel for families. "That's a minimal investment for employers and of great value to families," she says.

And while no one wants to think about death, let alone the death of a child, hospice benefits are another area employers could consider expanding. Many plans have limitations on hospice care, says Malof, although she advocates for no limits on hospice.

"It's not something you want to think about with children but being able to have hospice services, which include respite care, [is a benefit]," she says.

Kristin Frazier is a social worker with the Aflac Cancer Center of Children's Healthcare of Atlanta who specializes in oncology. One thing she's seen that she'd encourage employers to look into is having a program whereby employees can donate leave time to other employees.

"I've seen that, but it doesn't happen as often as I wish it would," she says. "That's a very tangible, concrete, easy thing employees can do. Even if it's just one day - eight hours - that can make a huge difference for a family."

Whether it's enabling job sharing or irregular work hours, employers have a role to ensure coverage "isn't just focused on the child who is ill, but the employee himself or herself and what they have to do day-to-day," says Dr. Milayna Subar, national practice leader for Express Scripts' oncology therapeutic resource center.

Adds Frazier: "The work community can be a tremendous support to these families. Don't be afraid to talk about the elephant in the room. When you ask them [employees] how they're doing, just make sure you really want to sit down and hear it. As long as you interact with sincerity and compassion, I don't think you're going to say the wrong thing."

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