Lupus Remains Out of the Medication Basket

G., an ultra-Orthodox woman from the center of the country, faced a desperate situation last month. She was no longer able to pay for her medical treatment for lupus, an autoimmune disease in which the immune system attacks and damages essential organs, and decided on her own to decrease the dosage of her medication.

When G. first contracted lupus seven years ago, it affected her joints. In recent years, the illness became more severe, and attacked her kidneys. However, the Kupat Holim Clalit health maintenance organization (HMO), with which she is insured, does not pay for the medication covering G.'s condition, and she had to pay for it out of her own pocket.

G. needs a drug called Cellcept, which enables the illness to enter remission and prevent destruction of the kidneys. The medication also replaces the chemotherapy treatment given to lupus victims who suffer from kidney damage, which for the most part causes fertility problems in women. However, Cellcept does not appear in the medications basket for women with lupus; it is covered only for previous liver and kidney transplant recipients. Maccabi is the only HMO that provides the drug to lupus patients suffering from kidney damage, and Kupat Holim Leumit covers 40 percent of the cost.

Lupus, a chronic and incurable illness, primarily affects young women in their 20s. The condition received its name from the rash resembling a wolf's mask that occasionally appears on patients' faces. The head of the Hebrew University's internal medicine department and a specialist in internal medicine and rheumatology, Dr. Dror Mevorach, estimates that some 4,000 young Israeli women suffer from the disease. According to the chair of the Lupus Association, Irit Regev, about 500 of the local lupus patients suffer from kidney damage.

Mevorach's clinic treats about 400 women with the disease, about half of whom suffer from kidney damage. "One of the accepted treatments for lupus is the infusion of a chemotherapy drug called Cyclophosphamide, which depresses the immune system," he says. "Like all chemotherapy treatments, this drug seriously affects women's fertility." Since the efficacy of treating women who have lupus and kidney complications with Cellcept has been proven in recent years, "I have been trying to limit the use of the chemotherapy drug, which endangers the women's health and has a negative effect on their ability to give birth," Mevorach says.

G.'s required dosage of Cellcept costs about NIS 2,500 a month. Her husband, a student in a kollel (yeshiva for married men) who lives on a monthly stipend of NIS 2,000, does not work. When she is healthy enough, G. finds odd jobs.

"The money that we have isn't enough," she says. "I don't have anything to cut from so that the illness will recede, and I'll be able to function." Mevorach assesses that dozens of women he treats require Cellcept, but cannot afford it. Less than a year ago, Mevorach, who treats G. at his clinic, tried to help her. In a letter to Kupat Holim Clalit, he explained that after G. had been treated with various medications that are no longer effective over five years, he believes Cellcept is the only drug suitable for her. However, Mevorach's request to recognize his patient's special condition was rejected.

Mevorach believes there is no economic logic for not paying for Cellcept, which does not harm fertility. "The cost of the chemotherapy drug, including a day's hospitalization, is nearly the monthly payment for Cellcept." Furthermore, "the HMOs are not taking into account that women who have undergone chemotherapy need additional follow-up treatment. Chemotherapy affects the fallopian tubes, and the cost of the treatment to rehabilitate the fertility of young women is very high, much more than a round of Cellcept treatment, which lasts for half a year to two years."

Irit Regev appeared this week as the national association of women with lupus representative at the Knesset Labor, Welfare and Health Committee's discussion of the distress of patients who have to pay for medications themselves. The committee members called upon the government to add NIS 300 million to the medication basket in the upcoming year, but nevertheless, the state budget was approved without that addition.

Regev, however, does not intend to give up. "Many women who have lupus came over the weekend to the protest tent set up by the patients' rights organizations at Rabin Square... We are being forced to live with a serious and limiting illness all our lives, and the basic human right to become mothers is also being denied to us." Clalit responded: "The Health Ministry determines those health services and medications that an HMO must provide. Cellcept is listed in the basket only for the administration of transplant rejection. Clalit approves payment for the drug in special cases when people suffer from defined kidney problems after other treatments have been exhausted."

Mevorach noted that complications resulting from lupus that affect kidneys are not included among the medical problems cited by Clalit. With respect to G., the HMO said that "it is not possible to approve the drug, since her medical condition is common."