Two years ago, 11-year-old Will Tellez was like many boys his age. A good student, he had many friends, loved sports and especially loved baseball. That year, however, the Tellez family came down with a viral infection. Everyone recovered – except Will. His parents were worried. His doctors were baffled and ordered testing in the hospital.
“At first, nobody knew what it was,” explains Will’s mother, Jeri Tellez. “But six weeks later, they confirmed that he actually had juvenile arthritis.” After that initial diagnosis, Will’s symptoms appeared to stabilize well enough for him to go home. Then, one day later, he was back at the hospital with chest pains, which landed him in the ICU for three days. “He had fluid on his heart,” recalls Jeri. “It was unbelievably frightening.”
Will began seeing a pediatric rheumatologist, who diagnosed that Will’s form of the disease was actually systemic onset juvenile idiopathic arthritis, a form of the disease that causes inflammation in the lining of the heart and lungs. The doctor prescribed Kineret, a drug shown to be extremely effective in certain forms of juvenile arthritis like Will’s.
“It felt like a miracle,” says Jeri. “Kineret cleared up Will’s problems within just a few days – practically overnight.”
An Overnight Success – 25 Years in the Making
Will’s dramatic recovery was actually the result of research breakthroughs first enabled by funding from the Arthritis Foundation more than 25 years ago. It began in the early 1980s, when Dr. William Arend, a young rheumatologist and researcher, was studying how inflammatory diseases developed. At the time, he realized that rheumatologic joint inflammation was caused, at least in part, by an excess of cytokines. Cytokines are molecules that fight infection in normal quantities, but cause inflammation and release tissue-destroying enzymes when present in excess. He also realized that one cytokine in particular, called interleukin-1 (IL-1), was overly abundant in the tissue surrounding the joints of rheumatoid arthritis patients.
Supported by the Arthritis Foundation, Dr. Arend began to explore what was stimulating cells to produce too much IL-1 by trying to encourage cells in the lab to generate the cytokine. In doing so, he discovered a protein that blocked IL-1 reception. The discovery of a mechanism that could be used to turn off inflammation in the body enabled researchers around the globe to better understand the inflammatory process.
The protein discovered by Dr. Arend went into clinical trials in the 1990s, and in 2001 the biotech company Amgen developed a recombinant, or cloned, version that would be marketed as Kineret. Dr. Arend remembers that initial studies of the drug actually proved to be disappointing because it didn’t work as well against rheumatoid arthritis as other products on the market. “But,” he adds, “against autoinflammatory disease in children, the response was dramatic.”
Will Tellez is proof of that dramatic response. “Without Kineret, Will might not be alive,” says his mother. “This form of arthritis builds up fluid on his heart and it can be life threatening.” Today, with Kineret, Will is an active 13-year-old all-star baseball player who plays second base and center field – a position that involves a lot of running. “He gets a little stiff from time to time, but he can run and play with the best of them,” says Jeri Tellez, with a smile.
Today’s Research Brings Tomorrow's Cures
Will Tellez wasn’t even born when Dr. Arend made the discoveries that led to his successful treatment. But he and his family know the value of that early research. “Arthritis changed my life in a bad way,” says Will. “Dr. Arend changed my life a second time.”
Dr. Arend responds that he finds it deeply satisfying to see what has come of his research. “It is the dream of every clinical investigator to work on something that will lead to a treatment that helps patients,” he says. “I am one of the few to have seen that dream realized, and in ways that no one ever anticipated. And that is a unique experience.” He asserts that Arthritis Foundation support was essential to his work – and remains critically important to the innovative research that has followed. “The Arthritis Foundation provides grants and seed funding when ideas aren’t complete enough for more long-term funding,” says Dr. Arend. “They make it possible for people to follow new ideas.”