She starts her day with a series of treatments that begins with an antibiotic, inhalation and physiotherapy that lasts over an hour. During the day, Yahav, 4, has to go through another round of the same. Each day she takes 15 different pills.
It all began when her parents noticed that from 3 months, baby Yahav was not thriving. She would eat heartily but not gain weight, and was diagnosed with cystic fibrosis, says her father, Chen Daniel.
CF is a hereditary disease that damages the pulmonary, digestive and other body systems by causing the normal body secretions to become thickened and gum up. Patients with the condition are prone to weight loss, diabetes and infections, and often wind up needing liver or lung transplants.
There are a known 660 cases in Israel – most of them children, because the disease is a killer.
Until not that long ago, CF patients might survive until age 3, says Dr. Galit Livnat-Levanon, director of the Pediatric Pulmonary Unit & CF Center at the Carmel Medical Center, Haifa. But there has been much advance: now patients can live into their 30s, though living into one’s 50s remains rare.
The breakthrough in care that extended life span so dramatically actually consists of multiple advances – for instance in antibiotics administered by inhalation; advances in organ transplant therapy; and a multidisciplinary approach. All the above turned the disease from an absolute killer to a chronic condition (almost).
One hamburger, 15 pills
Even so, living with CF is a struggle. Aside from the drug regimen, the inhalations, physiotherapy and, necessarily, sport, there are drugs; Gili Goldring, 34, takes between 60 to 70 pills a day. And that’s before the normal exigencies of life, like having to work for a living.
“Anything we eat with so much as a gram of fat requires taking an enzyme pill to help the body digest it,” says Goldring. “If I eat a hamburger, for instance, I have to take about 15 pills.” He also received a liver transplant and has to take antirejection drugs.
At least he’s alive – and that’s thanks to the multidisciplinary, one-stop-shop clinics for CF, which are armed with doctors, clinical nutritionists, pulmonary physiotherapist, clinical pharmacists and social workers, all under one roof and all working together. The six existing Israeli CF clinics meet U.S. and European standards, too.
Goldring is a fixture at the clinic for routine monitoring, as well as testing every three months. “I take advantage of all the team – first and foremost the dietitian, who has to check that all my readings are okay and give me guidance.” (Nutrition is an issue for CF sufferers, many of whom also develop diabetes.)
Also, once a person is taking so many pills – to aid functioning of the liver, kidneys, to digest, plus vitamins and antibiotics – balance is a delicate thing. CF sufferers have unique vitamins for them, which they get through the dietitian, who is there when he meets with the doctor, Goldring says.
The physiotherapists, who treat in-patients twice a day to help clear their lungs of sticky mucus, are possibly even more important. Otherwise, the patient suffocates.
The dietitian and psychologist turned Yahav’s life around, says her father. Ahead of diagnosis, she had become malnourished. At around 18 months, she stopped eating.
Gastro doctors counseled feeding her using tubes, a technique known as PEG (percutaneous endoscopic gastrostomy) – feeding directly into the gastrointestinal tract, bypassing the mouth and throat.
At the multidisciplinary clinic, the dietitian and psychologist decided together with the doctor that whatever else she had, Yahav had an underlying eating disorder. Their solution: place her in a regular kindergarten where she would eat with the rest of the kids. It worked, though it took three years for her weight to return to normal for her age.
No free lunch
But here’s the thing. The multidisciplinary clinics are a huge success. They have dramatically increased life expectancy for CF sufferers, but most of the bill isn’t covered by health-care insurance. Much of the funding for treatment has to be covered by a private association, the Cystic Fibrosis Foundation of Israel (CFFI), which consists mainly of parents of children with CF and depends almost entirely on donations. It gets very little funding from the state.
In 2015, CFFI received exactly 8,000 shekels from the state – about $2,000. That same year, the association paid 1.2 million shekels to the multidisciplinary clinics.
Consequently, treatment for CF patients in Israel depends on philanthropy. Raising money is hard: the CFFI is running a deficit of 650,000 shekels. The future of CF sufferers in Israel is in danger, says CFFI head Shira Zagury, who wrote a letter to the health minister warning that if the association can’t support the clinics any more, they could be shut down and their multidisciplinary teams fired – leaving the sufferers without recourse.
It’s already happening: the CF center at the Carmel Medical Center has operated without a clinical druggist for months. The clinic handles 100 patients, 70 of them adults taking an average of 15 pills a day, says Livnat-Levanon. The drugs may interact with each other and the know-how of a clinical pharmacist is crucial. The absence of a pharmacist endangers lives, in her opinion: “I’m not a pharmacist, I’m a doctor and there are things I don’t know. The clinical druggist is just as important as the pulmonologist or gastroenterologist.”
Asked her opinion on needing to rely on philanthropy, Livnat-Levanon says she finds it “intolerable, there is no other definition,” especially since there is no question that CF patients – and many others – clearly need the multidisciplinary approach.
Asked how it intends to address the potential crisis looming over the CF multidisciplinary center, and how essential services can be left in the hands of private donors, the Health Ministry commented, “Representatives of the ministry met with the foundation people in late June, because of the deficit in funding these services, and a discussion was held with the health minister on how to find a seasonally adjusted solution. Since the same problem arose with other, similar foundations, the Health Ministry is at present working on mapping services funded by external entities.”
Evidently, the state of the CF center is not an unusual phenomenon. We asked the ministry for the list of foundations that rely on philanthropy. It provided a partial list, explaining it had not finished its mapping. At least eight foundations finance medical positions at hospitals, including the Israel Cancer Association, the Association for Children at Risk, the Arab Dentists Association in Israel and the Beterem Safe Kids Israel organization.
“Most of the positions [paid for by donations] are health-care professions (such as psychologists, dietitians, social workers and speech-language pathology therapists, or administrators,” the ministry also stated.
Pressed for what the ministry will do if the associations run out of money to fund these positions, it said that beyond finding solutions to bridge gaps in the interim term, it is considering how to create a broad solution.
“A twisted practice has developed in the health-care system of associations and organizations being forced to step into the shoes of the state in financing critical health services,” says Dr. Adi Niv-Yagoda, a medical ethicist. “It is another example of the state shrugging off its responsibility in the area of health care. The state knowingly and deliberately created a dangerous reliance by the health-care institutions on money originating outside – a policy that reflects short-term vision of ostensibly saving the state money, but in practice it’s gambling on lives.” The result is that financing for crucial doctors, nurses and more relies on unstable sources that themselves depend on fundraising, Niv-Yagoda adds.
The Israel Cancer Association handles things differently than the CF foundation, says its director general, Miri Ziv: It enters into agreements with the hospitals, under which it funds personnel for a given period of time, after which the hospitals undertake to hire them.
“We fund new services that we want to prove are efficacious in treating cancer patients,” she explains. “For instance, we brought nurses into the hospitals to coordinate breast cancer therapy. By virtue of this venture, no oncology institute today operates without a psycho-social team. We don’t come to replace the system, but to upgrade it.”
Meanwhile, the threat hovering over the CF center has left a lot of patients seriously worried. “As far as I’m concerned, the result of positions getting cut at the clinic is categorically that the disease will worsen,” says Daniel, Yahav’s father. “If there is no dietitian or pharmacist who can tell me when and what to give Yahav, we could get the dosages confused. And if there is nobody to contact, her condition will deteriorate. This isn’t something about which I can say, ‘Okay, we’ll compromise.’ It is insane that we, the parents of children with CF, have to raise funds to finance the clinic. The parents form the managing committee of the association and are preoccupied with raising money, rather than caring for the child.”
“Even from an economic perspective, it pays to finance a position at the clinic rather than dozens and hundreds of days in hospital a year,” Goldring adds. And he knows how much the clinic can change a person’s life.
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