ST. LOUIS POST-DISPATCH Enlarge
ST. LOUIS — Lupus causes Elizabeth Aton’s left hand to tremble while an intravenous needle is placed into the top of her right hand.
She drives about 235 miles a month, round trip, from her home in Pittsfield, Ill., to St. Louis for a two-hour treatment that eases her lupus.
The treatment is brand-named Benlysta, generic name belimumab, developed by Human Genome Sciences and GlaxoSmithKline. The U.S. Food and Drug Administration approved it March 12 to fanfare by supporters of lupus research. Benlysta is the first medication developed in 50 years exclusively to treat lupus.
About 1.5 million Americans have lupus, according to the Lupus Foundation.
Dr. Richard Brasington, professor of medicine and rheumatologist with Washington University School of Medicine, led the research in St. Louis that included Ms. Aton.
The medication isn’t perfect, he said. It stands to help fewer than half of the cases, he said. Also, it doesn’t work well on black people as a group, although some individuals have benefited. The reason remains a mystery.
The real triumph is that the drug was developed and approved, he said.
“It opens the door to pharmaceutical companies looking for better [medications],” he said. That’s a breakthrough because lupus is a difficult condition to treat.
The Lupus Foundation of America defines lupus as an autoimmune disease — an immune system that attacks its own body.
It’s similar to rheumatoid arthritis where the immune system attacks the joints. But the foundation says systemic lupus, the most common form, attacks all of the other systems, including the nervous, cardiovascular, digestive, renal, and skeletal.
Dr. Brasington said it’s difficult to corner because the condition comes from multiple sources within the immune system.
Doctors most often work to relieve symptoms, he said.
In the case of Benlysta, researchers learned that some of the antibodies that attack the person’s body are produced by larger immunity cells.
The drug companies engineered an anti-antibody that seeks out and prevents one of the big, errant cells from producing more bad antibodies.
“It’s much more complicated than that, but essentially that’s how it works,” he said. “What’s important is we’ve had success at developing a targeted therapy for lupus so more and better targeted therapies will be available in the future,” Dr. Brasington said.
“This new drug is not perfect, but it’s the next step to improving people’s lives,” he said.
Indeed, Ms. Aton described her life before lupus as “Type A.” She has a bachelor’s degree in chemistry and a master’s degree in industrial hygiene and toxicology. She scrutinized health practices of companies, consulted for other companies, and sat on community betterment committees in St. Louis.
Her diagnosis in 1993 was the beginning of the end of that life. Over time, the eye pain, joint pain, fatigue, paralysis, nausea, and muscle pain became unbearable and hospitalized her two to three times a year.
By 1998, she had reduced her work to part time, working in research at Barnes-Jewish Hospital. But that slowed eventually and she had to quit altogether.
“I liked being a competent person, and suddenly I was not,” she said.
Therapy during flare-ups included increased steroids, morphine for the pain. “I developed that buffalo hump on my back and osteoporosis from the Prednisone [steroid],” she said. “Bad as that was, it wasn’t as bad as the disease.”
The trial for the medication began in 2004. She doesn’t know if she had the medication or a placebo.
In 2005, she entered the “open label” stage, taking the medication at the dosage the drug companies recommended.
Her life has improved markedly.
The two-to-three flare-ups a year reduced to one every other year. She has reduced the use of steroid dosages by half. She’s moving around again with much less pain.
Ms. Aton recently got some good news. The study has been extended 10 years to keep an eye on the long-term effects on 40 people selected from those who were in the trials nationwide. That means she gets the drug for free.
That’s a good deal. The drug treatment will be expensive, as much as $35,000 a year. It’s a bioengineered antibody that’s slow and expensive to produce, Dr. Brasington said.
While Benlysta is available now, it won’t be in wider use just yet, Dr. Brasington said.
Because of cost, medical insurance companies “will still want patients to use other [medicines] and if they don’t work, then they can graduate to this,” he said.
What’s just as important, “is that she’s getting her life back,” he said.
“This is humbling,” she said. “I can’t do all the things I used to do, but it’s giving me a little more time.”
So she mentors graduate students working fellowships through the Semiconductor Environmental Health Association and performs some consulting.
“I’m having more fun with family and friends,” she said. She has 19 nieces and nephews.
“It’s fun watching the next generation and the generation after that — seeing that the family will continue,” she said.
Will the drug prolong her life, considering lupus shortens life by years? “We don’t know,” Dr. Brasington said. “That will take 10, 20 years to know.”
MORE INFORMATION ABOUT LUPUS
Lupus Foundation of America: Heartland Chapter 314-644-2222 or LFAheartland.org.
Lupus Foundation of America: lupus.org.
Statement by Human Genome Sciences and GlaxoSmithKline on the FDA approval of Benlysta for treatment of lupus: alturl.com/i93gs.
Help paying for Benlysta: benlysta.com/copaybrochure.pdf.
Living Well with lupus, an online support group: alturl.com/6zvph.