Program of Excellence

Patients in Yale Pediatric Hematology and Oncology may see their doctor on a daily basis for three or four years and develop close bonds. Years after they’ve gone into remission, these patients send back notes about their lives: one played on a team that just won a state soccer tournament; another is running an oil company in Connecticut; one is a pediatric oncologist; another sent snapshots of her wedding.

Their outlook has been improving. Brain tumors are still frustratingly difficult to treat, and survivors of all cancers need to be followed closely as they grow up. But the good news is that 80 percent of patients do survive acute lymphoblastic leukemia—making hematology oncology largely a success story.

“This is what we try to instill in patients—that there is good reason to be hopeful, because we are making great strides in treating these illnesses,” said Joseph McNamara, MD, one of ten attending physicians in Yale’s practice. “We want them to look at the big picture and see that they can still have a good life ahead of them, and that we will continue to be there for them now and in the future.”

While it may be small compared to academic peers in Boston and Philadelphia, Yale’s Pediatric Hematology and Oncology Program has all of the same clinical components—including a brand new pediatric bone marrow/stem cell transplant program, the only one in the state. Each year, physicians in the practice treat 100 new patients a year—a number that has grown by 25 percent in the last three years.

“I believe the changes we’ve made in the last few years have made us more prominent within the region,” said Gary Kupfer, MD, who became director of the program three years ago. “We now have the major pieces in place not only to meet all of our patient’s clinical needs, but to be an internationally recognized research program. Our programs are becoming more visible and we’re getting a wider swath of referrals.”

The practice has a group of strong physicians focused on continuing to grow their patient population, partly so they can keep raising the bar on their contributions to the clinical research that drives treatment.

A large part of the group’s recent expansion can be attributed to Dr. Kupfer in 2008 bringing on the Guilford-based private practice of Dr. McNamara, a respected pediatric oncologist in Connecticut since 1989. The move consolidated pediatric oncology care under the Yale umbrella for all of southern Connecticut and allowed Dr. McNamara to join the Yale faculty. Now, five Yale doctors have hours in Guilford, and 40 percent of the patients visit the office for all of their care.

“We have, right at our fingertips, access to all of the other specialites as well,” said Dr. McNamara, adding that pediatric cardiology, pulmonary, endocrinology and gastroenterology have offices in the same building. “We have our own blood lab with three people working in it, and we can get our CBC results in five to 10 minutes,” he said.

The Guilford office consistently receives some of Yale Medical Group’s highest patient satisfaction scores, partly due to its convenient location and the fact that patients park right outside the front door. Dr. McNamara also gives credit to the staff, who make the bright, airy office a “fun place to come to.” There is a big toy closet, and children are given a small toy if they get a finger stick and a larger toy for a bigger procedure.

“Everyone in the office treats patients as if they were members of our family,” Dr. McNamara said. “When I walk into the room, I sit down with them so I can talk to them on their level. These are kids with cancer, and they need to be treated like they’re normal kids.”

In New Haven, the program moved last year from the pediatric specialty clinic into a dedicated suite on the 7th floor of Smilow Cancer Hospital at Yale-New Haven where it has four exam rooms, two negative- and two positive-pressure isolation rooms to protect immunosuppressed or contagious patients, a family lounge area, two consultation rooms and a dedicated infusion room. A walking bridge connects the suite with Yale-New Haven Children’s Hospital. Additional pediatric hematology and oncology clinics are available once a month in Bridgeport, Brookfield and Greenwich.

The year’s most exciting news for the practice has been the July 5 opening of a seven-bed pediatric bone marrow/stem cell transplant unit on the 8th floor of Yale-New Haven Children’s Hospital. Deborah Chirnomas, MD, MPH, directs the Pediatric Bone Marrow Transplant Program, providing autologous and allogeneic transplants for children with different cancers and such nonmalignant diseases as aplastic anemia and sickle cell disease.

Previously families had to go out of state for a child’s bone marrow transplant, which was “a tremendous burden,” Dr. Chirnomas said, considering an average inpatient stay for an allogeneic transplant is six weeks in the hospital, followed by frequent clinic visits. “If there are complications, they could be in the hospital for months and months. People may lose their jobs during this time, and because they are long distance, they lose social supports. They may have other children they have to leave at home,” she said. “It’s quite devastating, so we’re happy to be able to provide this service.”

Another improvement was the organization of comprehensive daily clinics to provide organized settings for treatment of patients in particular categories, including neuro-oncology, which is the only clinic of its kind in the state and draws from several disciplines to discuss brain tumors, still one of the most difficult cancers to treat. The clinics include:

• Monday: Health Education Research Outcomes for Survivors of Childhood Cancer (HEROS) clinic
• Tuesday: bleeding disorders
• Wednesday: neuro-oncology
• Thursday: sickle cell anemia
• Friday: bone marrow transplant

In the HEROS clinic, Dr. Kadan-Lottick, the director, focuses on providing survivors of childhood cancer with appropriate follow-up care. She is researching ways to involve primary care physicians in follow-up.

She is working with Tara Sanft, MD, director of Yale’s clinic for adult cancer survivors, to develop a program for adolescent and young adult survivors. “This group has unique needs and they feel they’ve been left out,” Dr. Kadan-Lottick said. “They’re not quite children, but they feel they don’t have a lot in common with older adults who get cancer. We want to provide supportive care that’s tailored to them, that will include things like career counseling, and communicate with them in ways they respond to, such as Facebook.”

To better treat the emotional and psychological aspects of childhood cancer, the practice partnered with Yale Child Study Center, and now has three psychologists, a psychiatrist and three social workers available to help families. Recently they added Michele Kupfer to work with school districts to make the appropriate accommodations for children returning to school after treatment. Neuropsychologist Lynn Balsamo, PhD, MA, performs learning evaluations, which are important for children who have had a disease that can affect their learning.

Care is intensive, specialized and closely tied to clinical trials. “The biggest lesson we’ve learned is that we must get together with other centers. We can put patients on clinical trials, working with others around the country, and figure out what works what doesn’t. We keep pushing the envelope to do things a better way,” said Dr. Kupfer. ” The practice is a member of the Children’s Oncology Group (COG), which works cooperatively with other academic health centers to conduct large-scale investigations.

Pediatric Hematology and Oncology’s diverse faculty is involved important national clinical trials, many originating from “home-grown” ideas:

• Dr. Chirnomas is developing local research trials for transplant in patients with various non-malignant hematological diseases.
• Kavita Dhodapkar, MD, is studying signaling pathways that regulate biology of dendritic cells, which are key regulators of the immune system, and developing new approaches to harness properties of these cells to boost immunity. She is also studying the changes in immune system that underlie certain autoimmune diseases in children.
• Paul Jubinsky, MD, is involved in national clinical trials for brain tumor patients and developing trials for more experimental therapies through brain tumor consortiums.
• Dr. Kadan-Lottick is a principal investigator of childhood cancer survivorship and neurocognitive outcomes after therapy.
• Dr. Kupfer is researching the relationship between maintenance of the genome and progression to cancer, as well as the manipulation of response to DNA damage and using it as a way to enhance cancer therapy.
• Farzana Pashankar, MD, director of the Sickle Cell and Hemoglobinopathies Program, conducts clinical research in sickle cell disease, focusing on pulmonary hypertension in children with sickle cell disease. Her other interest is solid tumors, and she is the vice chair of the rare tumor committee of the COG.

In addition to these activities, doctors in the practice speak in the community, participate in fund-raising bike rides, and volunteer at camps for children with cancer. Dr. Kadan-Lottick believes it’s impossible not to want to help outside of the exam room.

“Many parents will tell you that even though they didn’t choose something so awful as cancer, the disease resulted in their families’ growing in meaningful ways,” Dr. Kadan-Lottick said. The same could be said of the doctors. “This is the reason we all work so hard. We really want to return them to health and to life. We want them to be happy and well. We want to do whatever we can to make our patients better,” she said.