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Lee Bo-bae, 2, who suffers from a heart condition known as dextrocardia. (provided by Lee’s mother)
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Parents form coalition calling for government measures to restore supplies of vascular grafts
On weekdays, Lee Bo-bae, a girl who turned two years old this year, goes to a rehabilitation hospital, and once every two weeks, she gets out-patient care at a big hospital. Bo-bae has dextrocardia – her heart is a mirror image of a normal heart. Her right ventricle didn’t form completely and can’t function properly. This prevents clean blood from being delivered to her head and keeps her brain from growing. “My daughter has a serious congenital heart condition. She’s undergone five major surgeries and countless smaller procedures,” said Cheon Sae-rom, 27, Bo-bae’s mother, during a telephone interview with the Hankyoreh on Mar. 7. “We were waiting for the right time to have the final surgery, but we learned recently that Gore has stopped supplying artificial blood vessels.” “Because clean blood isn’t flowing to my daughter’s brain, she’s suffering from brain damage, development disorders and epilepsy. We’re desperate here,” Cheon said. “The government says that it’s going to do something, but I have no idea what they’ve done for the past two years,” she said bitterly. W. L. Gore is a company with a monopoly on producing artificial blood vessels, known as vascular grafts, which are used in operations for children’s congenital heart diseases. Two years ago, Gore’s medical business division withdrew from the South Korean market, and since then hospitals have run out of their supply of vascular grafts. Amid a growing awareness that large hospitals in the country are unable to provide these operations, a growing chorus of voices is calling on the government to quickly find a way to supply vascular grafts to ailing children who urgently need these operations. In an online community for Koreans with congenital heart conditions (with 15,165 members), there are frequent posts by mothers with sick children. “When Gore left the Korean market two years ago, I thought this might happen someday, and now that we’re here, I feel afraid. It’s time for all of us to work together so that our children don’t have to suffer anymore,” wrote the mother of a child who is battling a heart condition in North Gyeongsang Province. The mother of another sick child in South Chungcheong Province wrote the following post: “My kid has already had two heart surgeries, but she still needs the Fontan procedure, and I don’t know how many more operations there will be after that. Kids with this condition could just drop dead if they don’t get an operation at the right time, and time is ticking for my kid, too. The fact that there’s nothing I can do about this is heartbreaking, and I can’t stop crying.” When Ahn Sang-ho, the head of this online community, called on people to take part in an upcoming demonstration in front of the main office of Gore Korea, in downtown Seoul, 50 sick children and their parents said they would attend. Domestic hospitals have option of pooling and sharing supplies of vascular grafts According to interviews with the online community, experts and government officials, two major options are currently on the table. The first option is for domestic hospitals to pool their supply of vascular grafts. That would allow hospitals that run out of vascular grafts to draw from other hospitals’ supply. “We’re asking medical institutions to help out by sharing vascular grafts and other medical materials with hospitals that have critical operations to perform,” said an official from South Korea’s Ministry of Health and Welfare. But given the inadequate stock of vascular grafts at Korea’s hospitals, this option has clear shortcomings. “Since most hospitals don’t have many vascular grafts in reserve, they’re unlikely to share their medical supplies with other hospitals,” Ahn Sang-ho said. “This is just a temporary measure. At this rate, things will get worse not only in Seoul but also at hospitals in the countryside that perform fewer operations,” said Oh Tae-yun, chair of the board of the Korean Society for Thoracic and Cardiovascular Surgery. Government could purchase vascular grafts from overseas on behalf of hospitals The other option on the table is for the South Korean government to take direct action to buy vascular grafts on behalf of these hospitals. That would involve agencies under South Korea’s Ministry of Food and Drug Safety (MFDS) and other government agencies purchasing the material directly from overseas. “A program has been set up that would allow the National Institute of Medical Device Safety Information (NIDS), which is under the MFDS, to buy rare medical materials such as vascular grafts. This program is supposed to go into effect this June,” said an MFDS official. But there’s no telling if that approach will work, either. “We need to get in touch with Gore in order for us to move forward, but it’s hard to do much when they’re almost entirely ignoring us,” said another MFDS official. In the end, the ideal solution would be for Gore to resume supplying vascular grafts to the Korean market, said experts and patient advocacy groups, such as the online community. “Considering there’s nothing capable of replacing Gore’s vascular grafts, we can’t just keep kicking the can down the road forever,” Ahn said. If Gore Korea used to sell vascular grafts, which are essential for operations on congenital heart conditions, in Korea, why hasn’t it resumed domestic sales? The company stopped selling not only vascular grafts but other materials for medical treatment in Korea in Sept. 2017. That followed a decision by the Ministry of Health and Welfare at the end of 2015 to lower the amount it pays for all medical materials, including vascular grafts, in 2016, following a review by an expert panel. South Korea’s public health authorities, which permit the sale of medical materials and set prices, hold that there’s no reason for the manufacturer not to resume sales. The healthcare industry, however, has a different view. Gore was already selling the material at a lower-than-desired price, and even if the price were to be increased now, there are so few patients in the country that the supply would be too small to provide a profit. Given the low profitability, experts say, the company has no reason to resume sales. By Kim Min-je, staff reporter Please direct comments or questions to [english@hani.co.kr]
