Local cancer patient going to Seoul
Report on ‘Correcting Suffering’ ②
Last chance in Seoul…
Chunja Kim, who is participating in a clinical trial of an anticancer drug for lung cancer at a large hospital in Seoul, died on December 29 last year. <한겨레> I am interviewing reporters. Jo Yoon-sang PD [email protected]
‘If you get seriously ill, go to Seoul.’ Every year, 30% of cancer patients living in non-capital areas, the number one cause of death in Korea, and 70% of pediatric cancer patients go to large hospitals in the metropolitan area, such as Seoul. Patients with weak stamina take four to five hours to visit the hospital, or get a place next to the hospital and start living in Seoul. Since the mid-2000s, accommodations for patients have been built one by one near large hospitals in the metropolitan area, and now it has become a ‘patient village’ with gosiwons, gositels, share houses, and nursing hospitals. <한겨레>For three months from November of last year, “The Big 5” covered the actual conditions of patient rooms in the vicinity of a large hospital in Seoul and the National Cancer Center in Gyeonggi-do, taking advantage of the local essential medical vacuum. During the same period, with the help of the Korea Cancer Patient Rights Council, 46 local cancer patients and caregivers who were being treated in Seoul were interviewed and 188 were surveyed. Based on the results, after consultation with 10 experts, the reality of regional medical inequality in Korea and measures for essential medical care and medical delivery system are reviewed four times. editor
“Seoul is able to participate in clinical trials. There are many opportunities. There isn’t much of that in the provinces.” Kim Chun-ja (63) is a lung cancer patient whose cancer cells have metastasized to the brain. Her home is Ulsan, but he is staying at a nursing hospital in the metropolitan area from May 2021. He wants to participate in a clinical trial of an anti-cancer drug at a nearby large hospital. Since 2015, he has been going back and forth between hospitals in Seoul and Gyeonggi Province and Ulsan for a long time fighting the disease, saying, “It hurts my heart to be separated from my family as well as my sick body,” but considers it an inevitable choice. Clinical trials proving the unverified efficacy of new drugs or existing drugs may have no effect or side effects, but Kim intends to leave home again this year and hold on to the last chance of his life at ‘Seoul Big Hospital’.
The effect has not been verified, but it is an imminent possibility
On the 8th, we checked the number of clinical trials of anticancer drugs by region for 5 years from 2017 to 2021 (if the same drug was tested simultaneously in several places, one case per region was counted multiple times) through the office of Shin Hyun-young, a member of the Democratic Party of Korea, and a total of 971 cases over 5 years 907 cases were conducted at hospitals in Seoul. An average of 181 cases per year, or 93.4% of all clinical trials, were conducted in Seoul hospitals. Even the risk-taking treatment opportunities for terminal cancer patients are concentrated in Seoul. Gyeonggi-do hospitals also conducted 524 clinical trials over 5 years, an annual average of 105 (54%). On the other hand, in the rest of the region, there were no places with a total of more than 200 cases over the five years. In particular, during the same period, no clinical trials were conducted in Jeju and North Gyeongsang Province. Clinical trials conducted in Gwangju (15 cases), Gangwon (11 cases), and Chungnam (12 cases) were also very few, with only 2 to 3 clinical cases conducted in these regions per year. This means that cancer patients living in Jeju could not participate in clinical trials at local hospitals during the same period, whereas in Seoul, if the conditions were met, they were likely to participate in 907 clinical trials.
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Drugs under clinical trials have not been proven effective and safe, and are only possibilities in the verification process. A (66-year-old) cervical cancer patient who had not been able to obtain an effect from existing cancer treatment also came to Seoul from the region and conducted clinical trials three times, but did not see any effect. Kim Myung-hee, director of the National Institute for Bioethics Policy, said, “There is an aspect in which patients take opportunities through clinical trials, but there may be ethical problems that do not sufficiently explain the possibility of side effects to the person concerned, and side effects that shorten life.” Even so, even this possibility is very desperate for terminal cancer patients who have no other way. Hong Min-hee, a professor of oncology at Severance Hospital, said, “Strictly speaking, it is impossible to say that the effect of a clinical trial is good. There are better cases, and it may help some patients.” In fact, C (82), a patient with lung metastasis head and neck cancer living in Yongin, Gyeonggi-do, was also in poor health and had difficulty receiving chemotherapy.
Non-insured anticancer drugs that cost 7.2 million won a year… Clinical trial is free
One of the reasons terminal cancer patients want to participate in clinical trials is economic. This is because pharmaceutical companies compensate for the cost of administering anticancer drugs that are not covered by health insurance if the clinical conditions are met. This is what many patients with metastatic or recurrent cancer who want to receive prescription drugs despite the high cost of the drug. In the case of lung cancer oral anticancer drug ‘Tagrisso’ (ingredient: osimertinib), it has been approved in Korea since 2016, but it is subject to limited health insurance benefits. Through the test, a specific gene (T790M) is found in the patient, and only the second treatment that has recurred in Korea is recognized as ‘highly effective’ and is covered by health insurance. Patients who meet the conditions can be administered at a monthly cost of 300,000 won, but patients who do not meet these conditions must take the drug at non-payment. Non-salary costs include 6 million won for medicines per month and 72 million won for a year. Kim Chun-ja, a patient with metastasized lung cancer to the brain, was desperate as the cancer cells had spread to various places, including the brain and pleura, but was not eligible for health insurance because a specific gene was not found. In order to receive a prescription for an anticancer drug, he had to pay the full cost of the drug. “If cancer treatment lasts 6-7 years, wouldn’t the real money run out? I was really struggling because the drug cost 6 million won per month. I also told the professor in charge.” Chunja was under the clinical conditions at the hospital she attended. It was a test to verify the effect of this drug on lung cancer patients with brain metastases. Thanks to this, Kim received free anticancer drugs from a pharmaceutical company from a year and a half ago. “If this clinical trial fails, I have no other medicine. Then you will be close to the kingdom of heaven. Still, since it’s Seoul (hospital), I’m looking forward to seeing if a breakthrough drug comes out.”
In addition to anticancer drugs, there are many clinical trials of various treatments for cancer patients in Seoul. Amugae Seong (45), who lives in Jeongeup, North Jeolla Province and is receiving outpatient treatment at a large hospital in Seoul, is prescribed a treatment for the side effects of cancer, which is a decrease in neutrophils (phagocytes that block bacteria and bacteria). The treatment is uninsured and costs 500,000 won per session, but he received the medicine for free as he became a subject of clinical trials. Given this situation, some cancer patients choose to go to Seoul as a way to prepare for a recurrence or terminal stage situation. Lee Sook-gyeong (pseudonym, 44), a stage 2 breast cancer patient who only received radiation therapy instead of chemotherapy, said, “I came to Seoul because I thought there would be an opportunity to participate in a clinical trial if the cancer recurred or progressed later.”
6.4% of cancer patients in Seoul are “because of clinical trials”
A, with the help of the Korea Cancer Patient Rights Council, conducted an online survey of 249 non-metropolitan cancer patients who came to Seoul from December 15 to 18 last year (representative guardians and multiple responses allowed), and the number of effective respondents (hereinafter referred to as respondents) was 188. Analyzing the responses of people, 6.4% (12 people) answered that they came to Seoul because they thought there would be a clinical opportunity for a new drug. Among the total respondents, only 10.6% (20 patients) were stage 4 patients, but 7 out of 12 patients who came to Seoul in search of new drug clinical trials were stage 4 cancer patients, 2 patients in stage 3, and 3 patients in stage 2. The more terminal cancer patients who can no longer rely on existing treatments and find it difficult to afford treatment costs, the more they have nothing to rely on except for clinical trials in Seoul’s large hospitals.
Profits of multinational pharmaceutical companies amid risks of drug side effects
Seoul is the city where the most clinical trials have been conducted in the world for five years from 2017 to 2021. In terms of the country as a whole, Korea’s global clinical trial share (3.7%) in 2021 ranks sixth after the United States, China, Spain, the United Kingdom, and Australia. (National Clinical Trial Support Foundation ‘Korean Clinical Trial Industry Information Statistics’) After including clinical trials as one of 99 key technologies in the national technology map (roadmap), Korea has gradually emerged as one of the world’s clinical trial centers. The reason why multinational pharmaceutical companies prefer to conduct clinical trials in Korea is that patients with severe conditions are gathered in large hospitals in the metropolitan area, so they can save time and money. Hong Min-hee, a professor of oncology at Severance Hospital, said, “Pharmaceutical companies prefer medical institutions that can quickly collect a large number of patients suitable for clinical trials.” It will happen,” he said. According to data received from the Ministry of Food and Drug Safety by Shin Hyun-young, the office of the Democratic Party of Korea, the number of domestically approved anticancer drug clinical trials by domestic and foreign pharmaceutical companies increased from 171 in 2017 to 251 in 2021. In particular, clinical trials involving cancer patients have the risk of endangering their lives, so the decision to participate must be cautious. A professor at a university hospital said, “Sometimes worse results than conventional treatments”. However, the reality is that it is difficult for patients to know the possible side effects in detail. Lee Dong-geun, secretary-general of the ‘Pharmaceutical Society for a Healthy Society’ said, “Medical staff should fully explain the possibility of side effects to clinical trial subjects and help them understand the details, but in many cases this is not the case.” Even if there are points, we can’t actively respond,” he said. He also pointed out, “The situation in which the progress of clinical trials is used for the profits of hospitals and multinational pharmaceutical companies and the research performance of medical staff may have a negative impact on the protection of patient health.”
Reporter Park Joon-yong [email protected]