Care & Clinical Trials
Cynthia Aranow, MD, has treated hundreds of patients with systemic lupus erythematosus (SLE) in the last two decades. Given the countless visits and contacts she’s had with SLE patients, she doesn’t specifically remember calling her patient Ramona* at home.
But Ramona remembers.
“There were times when I didn’t go the doctor,” she says. “And she would call me and be like, ‘You’re not coming in. You have to come in if you want me to help you and work with you.’ ”
The relationship that develops between doctor and patient can produce side effects that never get noted in a case report or published in a paper—even if the relationship has the context of a clinical trial. This is the story of one of those side effects.
Trust Built on Making Sure
Dr. Aranow is assistant professor of rheumatology at the Columbia University Medical Center in New York City—one of only nine National Institutes of Health (NIH) Autoimmune Centers of Excellence. (See “A Range of Research,” at right, for more on Dr. Aranow’s work.)
Columbia’s lupus clinic is where Ramona receives treatment. Now in her early 30s, Ramona was diagnosed with SLE when she was 14. Her disease was very active in the early years, and while aggressive treatment has made it more controllable, inflammation damaged her kidneys and she needs ongoing therapy.
A Range of Research
Dr. Aranow’s interest in basic SLE research is intensified through her clinical research and her interactions with patients like Ramona. She was lured to the research team of Betty Diamond, MD, chief of Columbia’s rheumatology division, four years ago when Dr. Diamond offered her the opportunity to add translational research to her mix of responsibilities.
Dr. Aranow’s research foci include studying the fundamental mechanisms underlying the pathogenesis of SLE, investigating why patients with SLE sometimes develop neuropsychiatric problems, and looking for new therapies for lupus.
She is currently involved in several clinical trials sponsored by both industry and the NIH, targeting diseases such as lupus, scleroderma, and rheumatoid arthritis with approaches ranging from biologics to autologous stem cell transfer.
Dr. Aranow’s other SLE research activities include:
- Lupus Clinical Trials Consortium, a network of 23 medical centers that facilitates clinical trials.
- Immune Tolerance Network, a collaborative that is developing therapies for immune-mediated diseases based on the induction of tolerance.
- Systemic Lupus Erythematosus International Collaborating Clinics, an international group of researchers developing valid outcome measures for lupus.
- Medical advisor to two chapters of the Lupus Foundation of America.—LB
The deaths of two young friends with lupus encouraged Ramona to take control of her own health, yet she did not always comply with her treatment plan. “Every time I had a different doctor,” she says. “At times, I wasn’t taking my medicine because I didn’t feel like the doctors were caring and worrying about what I was doing.”
Dr. Aranow, who became Ramona’s rheumatologist about two years ago, is different. Ramona’s first compliment is that Dr. Aranow helped her lose weight by adjusting the steroid regimen that had made her uncomfortably heavy, but then her praise starts gushing out.
“With Dr. Aranow, she’s always making sure …” says Ramona. “Make sure you do this, take care of this. If I call and say, ‘I don’t have this prescription, it ran out,’ she’ll call the pharmacy right away for me.
“Every time I need her, she’s just a phone call away, or I can e-mail her, or even go by her office if I have any problems,” she continues. “She’ll take the time out and say, ‘Sure, I’ll see you,’ even if it’s not an appointment.
“She’ll take care of me and help me out with any problems I have,” says Ramona. “She really looks out for me.”
Clinical Trials Offer Promise and Challenges
“It’s not only that [minorities] are more susceptible to [SLE], but they have a more severe disease—more kidney involvement,” says Dr. Aranow. “Is there a genetic difference, or is it access to healthcare—is the disease smoldering longer before they present? I think both are true. We do know that patients who are less well off do less well.”
On the other hand, patients with SLE have many reasons to hope. Dr. Aranow uses the word “explosion” to describe the state of lupus research. “We’re clearly at a point where there are a number of very, very promising agents on the horizon,” she says. “We’re all hoping that these are going to make a significant impact on the clinical course of the disease.”
When Dr. Aranow suggested Ramona participate in a clinical trial, though, the decision was easy. “I volunteered for it because I try to help out with anything I can that has to do with lupus,” says Ramona. “Maybe my study can help somebody else.”
Dr. Aranow broached the topic of Ramona participating in a clinical trial very carefully. “I need to present it honestly—what the study involves and what we know about it, but also emphasizing what we don’t know about it,” she says. “I’m offering a clinical study because I think that it could be potentially good, but there are always potential risks. When talking to a patient about enrolling into a potential trial, before a patient says anything I add, ‘And I refuse to take an answer now. I want you to think about this.’ ”
Ramona participated a phase I study on the safety of the new biologic agent CTLA4-Ig given in conjunction with maintenance cyclophosphamide, where she received a single dose of CTLA4-Ig.
“Then we followed her very closely,” says Dr. Aranow. “When patients are involved in research studies, it becomes exceedingly important to find out how they respond and react to a new agent.”
Influence beyond Lupus Care
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Dr. Aranow’s influence has been nothing short of profound, in Ramona’ assessment. “[Dr. Aranow’s] helped me so much that now I work full time,” says Ramona, shyly bragging that she works for the dean of a community college. “I just graduated and got my associate’s in computer information technology, and this would never have happened if I didn’t have a doctor that helped me get through all this.”
* The patient’s name has been changed.
Lola Butcher is a medical journalist based in Missouri.
