Earlier this fall, Ioannis Kalampokis, MD, PhD, MPH, spent five weeks floating around the Aegean Sea in his fishing boat and visiting his parents on the Greek island of Chios. It was his first vacation in 16 months.
Kalampokis, an assistant professor in The University of New Mexico Department of Pediatrics, is the state’s only pediatric rheumatologist. He cares for more than 400 young patients from around New Mexico living with serious autoimmune and auto-inflammatory conditions.
“These are very complicated diseases,” Kalampokis says. “I am very, very busy. It’s very satisfying, obviously, because we are making a difference here. But there are limits on how much one person can handle.”
As large as it is, his patient panel accounts for only one-quarter to one-third of the number of children in New Mexico who likely need his services, Kalampokis says. That’s why he’s working with a group of parent advocates to raise the funds needed to bring additional specialists to UNM and create a training program.
“They’re very supportive,” he says. “We can do something very, very special here – and we will.”
Rheumatologists treat illnesses that arise when the immune system attacks various parts of the body, including internal organs and joints. “Most kids have what we call organ-limited disease,” Kalampokis says. “The most common one is their joints – juvenile arthritis.”
A smaller group of young patients have multi-symptom disorders, such as lupus, scleroderma and vasculitis. “We are dealing with disease that can potentially affect any part of your body,” he says. “They’re certainly rare, fortunately, but they definitely exist.”
For some reason – Kalampokis speculates it has to do with unidentified environmental factors – New Mexico has a significantly higher proportion of children with severe systemic diseases like lupus than elsewhere in the U.S. In such cases children require IV infusions of strong drugs, some of which are used as chemotherapy for cancer.
Because these diseases are so rare, there are no defined treatments, so doctors take a trial-and-error approach to find out which combination of medications will alleviate the symptoms. This often leads to time-consuming negotiations with insurance companies for prior approval. Kalampokis credits his nurse practitioner and staff nurses with helping to navigate the bureaucracy.
Despite the frustrations, patients today enjoy a much brighter prospect than a generation ago, he says. A host of new “biologic” treatments and a better understanding of the immune system means that, while patients still cannot be cured, “basically they can lead normal lives.”
Kalampokis wants to ensure that more New Mexico children have access to these life-altering treatments. Right now, new patients must wait six months or more to be seen for the first time – a troubling statistic, given that with early treatment most symptoms can be reversed.
UNM is currently recruiting a second pediatric rheumatologist – an important first step. But Kalampokis would like to see UNM develop its own pediatric rheumatology fellowship training program, and for that a minimum of three faculty would be required.
The Pediatric Rheumatology Foundation of New Mexico, led by the parents of his patients, hopes to raise enough money to create an endowed chair dedicated to research, Kalampokis says. That would free up his current salaried position to hire another specialist.
“The foundation was named by the parents,” he says. “We have actually created a parental board. They guide us. This is done for the families of New Mexico. This is done from the families for the families. They’re making all the decisions.”
If the foundation’s fundraising goals are met, it could be a game-changer, creating a “critical mass” of expertise. “If we create a training program here,” he says, “that will solve the pediatric rheumatology problem in the state for a very long time.”