Life With Lupus: Juliette Hale
I'm a Pioneer
by Jan Grice
by Jan Grice
Lupus is a lifelong disease and that often means lifelong medication. After the initial hurdle of diagnosis is over, the doctor and patient start the complex process of getting the right combination of drugs to keep flares at bay, diminish symptoms, and minimize drug side effects. For most, this has meant a combination of anti-imflammatories, steroids, and/or immuno-suppressants. In fact, until last spring, not one new drug had been developed, tested, and approved for marketing in the United States for the treatment of lupus symptoms in over 50 years. Doctors and patients were limited to the same arsenal of weapons, each with its own drawbacks.
On March 9, 2011, that all changed. The FDA approved the use of a new drug, called Benlysta, for the treatment of lupus. The Human Genome Project, Inc. conducted the research and development of this new treatment, which is a human monoclonal antibody that inhibits the activity of B-cells – one of the root factors in autoimmunity. GlaxoSmithKline is co-marketing the drug. In the world of lupus research, this is a significant milestone that can be attributed to the persistent work of doctors, researchers, patients, and lupus advocacy groups throughout the nation. Our local Pennsylvania Lupus Foundation can share in the credit, through its tireless efforts at fundraising for lupus research. Furthermore, one Western Pennsylvania woman plays a very personal and specific role in this achievement: Juliette Hale.
Readers of this newsletter may recall meeting Juliette in a 2007 Life with Lupus article entitled, “My Lupus is on My Face.” Juliette was diagnosed with systemic lupus at the age of 20 and later went on to develop severe discoid lupus, with lesions on her face. She fought a brave battle with the disease, overcoming its attacks, and going on to become an articulate spokesperson for the Lupus Foundation. Since we last spoke to her, her symptoms have been greatly reduced and her daily life is not consumed with chronic illness – an improvement that she could not even allow herself to hope for. Six years ago, Juliette agreed to participate in a research study of Benlysta conducted at the University of Pittsburgh Medical Center. UPMC is one of many study sites throughout the U.S. that participate in the Human Genome Project research. For Juliette, Benlysta has meant days without pain, hardly any trips to the emergency room, and the freedom to enjoy her new grandson.
A patient of lupus researcher Dr. Susan Manzi since her initial diagnosis, Juliette was no stranger to the staff at the Lupus Center for Excellence in Pittsburgh. “I was taking 23 pills a day. I’d be stable for a while, but then I’d be sick again. We were always nip-tucking my medications.” Dr. Manzi suggested that Juliette participate in the Benlysta study. Juliette recalls, “I was given information to take home and look over. Dr. Manzi was confident about the drug, and I didn’t feel that she would give me something that would hurt me.” At her next office visit, Juliette agreed to be a subject in the study. The research was a “double-blind” study, which means that two groups of subjects participate. One group receives the medication under study; the other receives a placebo. Neither subjects nor researchers know who is receiving the real medication. For the first three years, Juliette didn’t know if she was receiving Benlysta but she did know that she was feeling quite a bit better. “After about six months, I realized I wasn’t having so many skin flares anymore. I didn’t want to trust it, but I was feeling better.” After the initial 3-year trial, Juliette learned that she had, in fact, been receiving Benlysta. Now she continues in the study, receiving it as her regular medication.
Benlysta is delivered by infusion into a vein. Once each month, Juliette goes to Montefiore Hospital in the Oakland section of Pittsburgh and undergoes a one-hour infusion of the drug. Every three months, she has a 24-hour urine check. The administration routine is not a problem for Juliette. “I feel so comfortable there. It’s like visiting family.” She also sees her own rheumatologist every two to three months, who coordinates with the study doctors.
Always the advocate for lupus, Juliette considers herself a full participant in bringing Benlysta to the market. But, she by no means considers her work finished. She marvels, “Do you know that of all the thousands of patients in this study, only 108 were African American?” Juliette is concerned that numbers like these may skew the results by inadvertently targeting the Caucasian population. “I want to put that forward, to encourage more African Americans to participate in these types of studies. We need to know how new drugs affect and work in all populations, and especially African American because we are so affected by lupus.” Juliette talked about the methods used to recruit patients: “You’re sitting in the waiting room, and you look at that sign on the wall about a study, and you think, ‘I have enough problems; I already have lupus!’ and you aren’t going to tear off that little slip with the phone number.” Instead, she wants to talk directly to her community. “If I take the initiative, if I tell them about the process, about how it has helped me, someone else might participate.”
Although we tend to think of medical research as objective and detached, for Juliette, the Benlysta study was a very personal experience. “I appreciated the whole process. It was exciting and positive and left me with a great deal of hope. I feel like a pioneer!” She had the opportunity to meet with the researchers from Genome and Glaxo, recalling, “They couldn’t have been more pleased to meet an actual patient who was helped by their work. They were even brought to tears!” By continuing to study Juliette and others, the researchers are learning more about how the drug is tolerated and which sub-sets of lupus patients are best helped by it. Because Benlysta is a drug that suppresses the workings of immune system, it can have some serious side effects that warrant careful monitoring. When asked about the potential of these side effects, Juliette answered, “Lupus was already causing me great pain. Why shouldn’t I try it?” Luckily, she has experienced no adverse side effects.
Juliette’s story shows us how important it is to have a working relationship with a medical team when living with a chronic illness. Education, communication, and collaboration are tools that can enhance the effectiveness of medications by ensuring that they are used to their best advantage. Juliette’s participation as a study participant helped her to develop a genuine relationship with her medical team, which can only enhance the care she receives. When we last spoke to her in 2007, she was a single mother raising her teenage son, Devon. Juliette’s mother lived with them and helped her through times of sickness. Juliette recalls, “All I wanted then was to see my son graduate from high school. I couldn’t hope any farther than that.” Today, she has a grandson and a new romance in her life. “I never wanted to be in a relationship because I didn’t want to be a burden for anyone. But now, I can look so much further. Benlysta has given me a life.”