Israel: Crohn’s and colitis patients in the periphery find it difficult to receive proper treatment

Over 50,000 patients with Crohn’s and colitis, inflammatory bowel diseases, live in Israel, and according to data recently presented to the Health Committee, the numbers are expected to increase to approximately 100,000 patients in the next six years. However, many of them, especially those living in the periphery, have to deal with long waits for appointments, traveling to medical centers far from their homes to receive quick treatment, and a lack of mental and emotional care to deal with the serious chronic disease. All of these add to the findings of a new survey carried out in the Department of Inflammatory Bowel Diseases within the framework of the Israeli Association for Gastroenterology and Liver Diseases which indicates that only half of the public hospitals have a dedicated unit for the treatment of these diseases.>> Everything you need to know about Crohn’s and colitis

 

“I’ve always had food sensitivities, but I didn’t think it was anything critical,” says 22-year-old Raziel Hadad, who was diagnosed with Crohn’s disease about a year ago, when he began to suffer from severe symptoms and stomach pains. “There was never pain at such a level. Everything happened quickly, from an active person who works 12 hours a day, I turned into a person who can’t walk normally or work at all.”

Hadad immediately contacted a family doctor in his hometown of Netivot, who referred him to a gastroenterologist. However, due to the huge lack of manpower in the area, he had difficulty finding a close appointment. “Everywhere I checked, including in Be’er Sheva and other cities in the south, I was told that the available appointment was only for another three or four months, and every day in Crohn’s disease is critical. Today I can also say that during this period the disease was already active in me. It was simply complete helplessness , I was waiting for someone to save me.”

At this point, Hadad’s pain became even more severe. “I begged with tears to advance my turn, until luckily someone canceled and I was able to shorten the waiting period to a month.” He testifies that even after he finally received the diagnosis that he has Crohn’s disease, the treatment did not become more accessible. “The long wait for appointments and the unavailability of the gastro doctors continued, and I did not receive the treatment envelope that I needed. I was treated several times at Barzilai Hospital by Dr. Ofer Ben Best, who is an excellent doctor, but he is one doctor out of 500 patients, and I felt the difficulty His and the department’s. He cannot reach everyone, and this required me from time to time to go to private doctors or to other hospitals in the center.” He further adds that despite the difficult mental struggle of being diagnosed with a chronic illness in mid-life, he did not receive continuous psychological treatment as he was entitled to and needed. “There is no home The patients have a standard for a social worker for the gastro department, even though it’s basic.”

With the beginning of the war, and following the stress and anxiety that accompanied the events of Shiva in October, Hadad’s condition worsened, and he experienced a severe attack that required immediate treatment. The family was then staying in Eilat, where they were evacuated following the events, but since Shahhad did not receive proper treatment there, they were forced to return to Netivot, despite the security situation. Hadad was hospitalized at Barzilai Hospital, where he was informed that he urgently needed surgery for a bowel resection, which he claims would have been avoided if the diagnosis in the community had not been so delayed. “I got into a serious situation because for months I chased after appointments and getting treatment. If they had diagnosed the disease in time, everything would have looked different. If they don’t bring in more doctors, people will go through what I went through. The number of patients that were in 2010 is not the number of patients that exist today, it is It doubled. Crohn’s is a disease that can break out in a day, and every week or two it was a very difficult time for me, and I did not believe that I would get out of it. It is very depressing to be so helpless and not get treatment Properly”.

 

 

 

“Crohn’s is a disease that can break out within a day, and every week is critical in treating it. It was a very difficult time for me, it was crazy suffering and I didn’t believe I would get out of it. It’s very depressing to be in such a helpless state and not receive proper treatment”

Raziel Haddad, Netivot

“He explained to me that all the tests I was sent for were unnecessary”

The diagnosis of 26-year-old Oraine Yaffe from Acre was also accompanied by a long wait. “The findings of the colonoscopy I did were inconclusive, and even after I underwent additional tests, including a CT scan of the small intestine, the gastroenterologist at the HMO was unable to determine whether it was Crohn’s or colitis. He was very attentive, but was not an expert in the field and this was also felt in the treatment. Finally he He referred me for further treatment in one of the hospitals in the north.” Yaffe says that at the hospital she had difficulty getting a proper response. “The doctor did not have a personal email through which he could be contacted, and when I sent an email to the department, they would reply two months later, and this was actually the only way to make an appointment. And the appointment they offered me was always months in advance.” She adds that due to the situation she went to a private doctor, far from her place of residence, and her parents had to bear the high costs. The private doctor was also the one who finally diagnosed Yaffe with colitis. “He explained to me that the diagnosis was delayed for no reason, and that all the tests I was sent for were unnecessary, because everything appeared in the photos and forms from the very first test.”

Shortly after the initial diagnosis, Yaffe’s condition worsened, and in additional tests she performed, it was discovered that the disease had spread to the entire colon, which required steroid and biological treatment. Due to the limited response she received even from the private doctor who was busy with inquiries, and due to the high costs, Yaffe decided to look for a medical center that works with her health insurance fund. At first she turned to the Emek Medical Center, which has a dedicated center for inflammatory bowel diseases, the only one in the north, but according to her, due to the overload, they were not accepting new patients, and as a result, she again had to travel far from her home to receive treatment at the Sheba Medical Center (Tel Hashomer). “I immediately felt the difference in treatment in the center compared to the periphery. At Sheba I received personal attention and high availability,” she says, and also emphasizes the importance of the psychological treatment she received at the hospital. “In the end, it’s a diagnosis of a chronic disease in the middle of life, and there are a lot of crises around it. You just feel sick, from being a healthy person you become someone who is in bed a lot. Your life changes, and so does your diet, and during an attack in general there is a mental crisis, and I needed the help to get out of it.” Today, when her condition is stable, she only comes to Sheba Hospital for check-ups once every two months, but she still wishes for a different situation. “I would prefer to have a center near the house, which is available and provides an immediate and comprehensive response.”

“The use of steroids involves many severe side effects, as well as a lack of long-term effectiveness. The data suggests a lack of informed and timely use of the advanced medical treatments available today”

Lt. Col. Dr. Saleh Daher

Only half of the hospitals have a dedicated unit

“Crohn’s disease and ulcerative colitis are chronic inflammatory bowel diseases,” explains Lt. Col. Dr. Saleh Daher, head of the field of gastroenterology in the medical corps and a member of the department of inflammatory bowel diseases within the Israeli Association for Gastroenterology and Liver Diseases. According to him, the young age of onset of most of these diseases, in the second and third decades of life, their chronic nature, as well as the need for expensive drug treatment and for extended periods of time, place a great burden on the national health system and cause significant damage to the patients’ quality of life and functioning. “Non-optimal treatment may lead to a deterioration in the patients’ condition and the need for repeated hospitalizations and surgeries.”

As of the beginning of 2023, according to recent studies led by Prof. Dan Turner from the Shaare Zedek Medical Center in Jerusalem, approximately 54 thousand patients with inflammatory bowel diseases live in Israel, 55 percent of them Crohn’s patients, and 45 percent colitis patients. “We see that the extent of morbidity is on the rise both among the Jewish population, where a doubling of the number of patients was seen between 2005 and 2018, and among the Arab population,” says Dr. Daher.

 

 

 

According to him, the optimal treatment of these diseases requires a multidisciplinary team within dedicated units. “The European Crohn’s and Colitis Organization (ECCO) has defined the required standard, so that in addition to the specialist doctors, the other professionals who will take part in the first cycle of treatment are a coordinating nurse for the treatment of inflammatory bowel diseases, dieticians specializing in the field of gastroenterology, medical psychologists and social workers.” He emphasizes that as of today, there is no formal regulation of inflammatory bowel disease units in public hospitals in the State of Israel.

A new survey carried out by the Department of Inflammatory Bowel Diseases, led by Dr. Daher, examined the composition and availability of dedicated units for the treatment of inflammatory bowel diseases in all public hospitals in Israel and brought up alarming findings. According to the data, only half of the public hospitals have a formal unit or service For the treatment of inflammatory bowel disease. The survey also found that more than half of all patients in Israel are treated in clinical settings in the community and not in comprehensive unit settings suitable for the treatment of these diseases. Only about 25 thousand of all patients, less than half, are monitored in dedicated hospital units.

The findings also refer to the lack of mental and emotional care for patients with these diseases, since most centers lack a service aimed at such care, and in 80 percent of the centers the scope of a medical psychologist’s position in the gastroenterology centers is only a quarter of a position. The survey data also shows that there are disparities in treatment between the center of the country and the periphery, which are reflected in the availability and quality of medical care – in most centers in the north and south of the country there is a significant shortage of support teams, a dedicated nurse for inflammatory bowel diseases is often employed only a quarter to half a time, as are specialist dietitians in the field.

Dr. Daher points out that previous studies that dealt with the subject, led by Prof. Turner, also point to disparities on the geographic and socioeconomic levels, and indicate that living in the periphery and of a low socioeconomic level entails a significantly increased risk of the patients being treated for prolonged periods with drugs from the steroid family. “The use of these preparations involves many severe side effects, as well as a lack of long-term effectiveness,” he says and adds that the studies have even shown that living in the periphery and also belonging to a low socioeconomic level entail a significantly increased risk of needing surgical treatment. “This fact suggests the lack of intelligent and timely use of the advanced medical treatments available today State health. Belonging to the Arab sector also contributes in turn to further disparities in the quality of care.”

“There is no progress in providing appropriate treatment for patients in the periphery, on the contrary, the war with iron swords exacerbated the gaps in the quality of care even more and the resources and manpower required to reduce them were not allocated”

Attorney Eyal Tzur, the association for the support of Crohn’s and colitis patients

Last February, the Inflammatory Bowel Disease Department presented to the Knesset Health Committee the steps required to improve the quality of treatment for inflammatory bowel disease patients in Israel. Among other things, recommendations were made for the recognition of dedicated units for these diseases within the gastroenterology institutes in all public hospitals in Israel, the recognition of the standard of a nurse coordinating inflammatory bowel diseases, as well as the recognition of the need for at least one full-time dietician for each dedicated unit. A part-time medical psychologist or social worker was also recommended, and the establishment of non-hospital inflammatory bowel disease centers on the basis of the health insurance funds, with an emphasis on the peripheral area, to improve accessibility and availability for the patient population.

 

 

 

Attorney Eyal Zur, chairman of the Association for the Support of Crohn’s and Colitis Patients, emphasizes that this is not the first discussion that has taken place on the subject, and that there is no change or progress in providing proper treatment to patients in the periphery, but the opposite. “The war with iron swords exacerbated the disparities in the quality of care even more and the resources and manpower required to reduce them were not allocated. Now, we await the launch of the discussions on the subject in a broad forum where data and positions of all stakeholders will be presented, following the guidance of the chairman of the health committee in the last discussion held on the subject months ago number, in which he called for the establishment of a work team that would deliver a systematic plan to address the existing gaps.”