Hundreds of undocumented HIV carriers in Israel receive inadequate treatment and outdated medications that sometimes cause severe side effects. Moreover, they are unable to access treatment for their condition and related infections or receive sufficiently close monitoring. Carriers are admitted to the Health Ministry’s treatment program only after their condition deteriorates, and their immune system is already dysfunctional.
One source familiar with the situation said the plan suffers from “quality of treatment and a management level worse than third world countries.”
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According to the latest Health Ministry data from 2019, 130 out of 430 new carriers diagnosed that year were undocumented and without health insurance.
Doctors and professionals in the field say the treatment regimen for undocumented HIV carriers is very narrow, and far removed from the quality provided to Israeli carriers, who enjoy treatment that is among the most advanced in the world. As a result, physicians often find themselves helpless when treating patients.
D., 50, is an undocumented migrant who arrived in Israel from Ethiopia about 25 years ago. She was diagnosed HIV-positive 19 years ago, when she was five months pregnant. In 2016, after years of being treated on a voluntary basis, she started to receive treatment from the Health Ministry, in the course of which, she said, she was given medications that weren't suitable for her and caused multiple side effects.
“My body does not react well to the pills,” she related. “They cause me pains, exhaustion and an accelerated heartbeat. When I take them I am afraid to leave the house and I simply prefer to forgo that on certain days.”
D. said that she asked for medications appropriate for her but her request was denied because they are not included in the program. “I was told that if I want to buy them privately it will cost me 6,000 shekels [$1,850] a month. I don’t have that amount.” Now she is being treated irregularly. “The doctor gave me what there is, what she manages to get hold of,” she said, referring to the more expensive medications. “I don’t know which medication I will be receiving in another month or two. Sometimes I just switch treatment.”
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D. is also ineligible for regular follow-ups. Undocumented persons are entitled to a test that monitors their immune system activity only once a year, whereas Israeli patients are entitled to a quarterly test. In the meantime, neither D. nor her attending physician know how effective the treatment is. In addition, she is not entitled to treatment (to receive treatment for? To be treated for?) of side effects and accompanying complications.
“I don’t have a regular job and have no way to pay for private treatments,” she said. “I go to clinics in Jerusalem’s Old City because it’s cheaper there. I want to live, but I am not getting what I need.”
“It’s not just a difference between life and death. It’s a difference between life and death in agony,” said Dr. Itzik Levy, director of the AIDS clinic at Sheba Medical Center, Tel Hashomer. “The treatments currently given to undocumented carriers are ones that are no longer used – not even in third world countries.” In 2016, after a protracted struggle, the Health Ministry decided to offer treatment to undocumented HIV carriers. “The problem is that the quality of care and its administration is worse than in third world countries,” Levy claimed.
Levy said undocumented carriers are only entitled to outdated drugs that cause a long list of side effects, absent in the latest medications. “These are drugs that are not currently administered to any Israeli carriers – drugs with lower efficacy that lead to many side effects, such as anemia, weakness, increase in blood lipids, diabetes, and neuropsychiatric symptoms,” he asserted.
In addition, the program does not cover treatments for other complications and AIDS-related illnesses, which are caused by the disease or the side effects of its treatment. “They do not receive other drugs, including preventive ones. If you need to prevent disease or administer complex antibiotics – they aren’t eligible,” he said. “I face patients I cannot help. I have carriers who have fallen ill because of the drugs’ side effects or other reasons and had nothing for them. Their immune system deteriorated. In one case, a patient had a stroke and remained disabled for life. Another patient had lymphoma and died. These are things that could have been prevented with better treatment for HIV suppression.”
Dependent on leftovers
In 2016, the National Program for the Treatment of Undocumented HIV Carriers was launched, led by the Health Ministry’s department of tuberculosis and AIDS, designed to handle immigrant carriers, many of whom come from endemic countries, including refugees and migrant workers from Africa and carriers from the former Soviet-Union who overstayed their tourist visas and became undocumented migrants in Israel.
The program is designed and budgeted for the treatment of about 400 HIV carriers aged 18 and over who are in Israel for at least six months and lack health insurance. Candidates for the program were required to appear before a medical committee. S., 60, emigrated from Ethiopia in 1995 and was diagnosed HIV positive three years later. In 2006, he also fell ill with tuberculosis and a brain infection. He suffers from neural and bone damage. In his case, too, the treatment he’s getting through the program is insufficient.
“My treatment depends on what the doctor can get hold of,” he said. “The other medications I buy myself, costing me about a thousand shekels a month.”
K. 70, arrived in Israel from Ethiopia about a decade ago and was diagnosed as a carrier shortly afterward. She said that one of the two medications she receives as part of the program causes severe side effects. “The medication causes vomiting, loss of appetite, exhaustion and a serious rash all over the body,” she said. “That’s in addition to a chronic lack of iron. The new medications are better and don’t produce side effects, but I don’t know which medication I’ll get, or in what quantity. The pills will run out in another month and a bit, and I’m already stressed. I don’t know what will happen.”
One of the drugs that treats a significant proportion of undocumented carriers is called Zidovudine (AZT), approved for use in 1987. Another drug used on this group of patients is efavirenz (Stocrin). Both drugs cause severe and often fatal side effects. For these reasons, these drugs have been discontinued in most countries, including Israel.
“These are drugs with a lot of side effects that Israeli carriers have not received for more than a decade. Israeli carriers are treated with new-generation drugs that have almost no side effects, are effective against resistant viruses, but are more expensive,” said Levy. “This situation is forcing me to perform poor medicine. I have a patient in her sixties for whom I found a donation of two boxes of medicine that she needs and is not entitled to. Once she runs out her fate will be sealed unless we find more.”
Other senior AIDS physicians identified with the situation described by Levy.
“Treatment for Israeli citizens is second to none, including in Europe. Israeli carriers receive the most advanced, expensive, and unlimited treatment. We are talking about drugs that cost between NIS 4,000 and NIS 5,000 per month per patient. Cost is certainly a consideration,” said Dr. Hila Elinav, director of the AIDS medicine unit at Hadassah, and a board member of the Israeli AIDS Society. “Most patients do fine with the old drugs, but some have severe side effects or have developed resistant strands. We have no solution for them.”
She said this situation creates the need to source leftovers from Israeli patients. “This is a very problematic method, and I am constantly under pressure,” she said. In cases in which they don’t manage to obtain the right medications, she said, “I have to change the treatment, and that is absolutely not good.”
Other sources agreed that the existing treatment is problematic, but stressed that before the program got underway undocumented carriers received no treatment at all.
According to Dr. Dan Turner, Director of the AIDS Center at Ichilov Hospital, and Chairman of the Israeli AIDS Society, “The treatments given to undocumented carriers are the same treatments given to Israeli patients previously. We are talking about a relatively large number of pills and with a very high percentage of side effects.”
Looking back, he said, many Israeli patients who received the obsolete treatment survived and coped with the side effects. “Our big problem is the fact that a few dozen patients can’t receive the old treatment, whether due to resistance or because of various side effects, and we have no solution for them,” he said. “In some cases this reaches a condition that poses an immediate danger to their life.”
Another problem professionals point out is the entry threshold to the program. Unlike Israeli carriers who are treated upon diagnosis, an undocumented carrier who tests positive will only be monitored and treated after their immune system activity falls below the set threshold. “The threshold for entering the program is a scandal and that is something that must change,” Elinav said. “It’s not just that people are at risk of developing a disease. They can infect others and this counters the goal of lowering the overall morbidity. Beyond that, untreated carriers come to hospitals with AIDS, and then their condition is much more difficult.” According to Turner, research shows that the earlier the treatment of carriers begins, the more their life expectancy increases, and the more AIDS-related illnesses and comorbidities decrease.
And yet, some professionals believe the program should be judged more broadly. “It is true that there is criticism of the program, but it should also be welcomed. The situation before was terrible. Today, the program helps most patients but needs improvements,” Turner added. “The program is welcome but there is still a lot to do." According to the Ministry of Health, more than 500 carriers have been treated to date under the program. There are now about 350 people in the program, only a few of whom are being monitored, as they do not yet meet the criteria.
“The program is vital and helps hundreds of HIV carriers a year receive life-saving treatments. The number of undocumented carriers being treated has more than doubled since it was launched,” said Noga Oron, chairwoman of the Committee for the Struggle Against AIDS. “There is an urgent need to add new generation drugs to the program for those patients whose drugs don’t suit their needs.” A more effective program will reduce the burden on the health system because of unnecessary infections and hospitalizations. It is also proven that the HIV carrier that is treated optimally is not contagious at all, and therefore it is recommended that every person who is HIV-positive be treated as soon as possible," said Oron.
The Health Ministry commented: “The use of medications other than those stipulated in the guidelines would raise the cost of the program by several million more shekels or would bring about a significant decrease in the number of patients who can benefit from the program. Israel is one of the few countries in the West that provides free antiviral monitoring and treatment for non-citizens without health insurance. The program operates on a strictly medical and humanitarian basis only. The medications are those recommended by the World Health Organization.”
It added: “At the same time, there is a small number of carriers whose treatment in the program is unsuitable (due to resistances), and they receive the medications in other tracks. This year again, the tuberculosis and AIDS department requested a special budget for which authorization has not yet been received. All told, the program is essential, both in terms of public health and on humanitarian grounds. However, the program is operating under challenging budgetary constraints, especially in the past few years.”