Remote delivery of medical supplies for rare disease patients allowed

Addressing supply shortages caused by the Middle East conflict… Minister Jeong, “The state will take responsibility.”

Forges partnership with ‘Soldoc’ … one-stop support from syringes to infusion sets and medicines

Phased rollout starting on the 4th… includes short bowel syndrome, Cornelia de Lange syndrome, Pompe disease

Minister Eun-kyeong Jeong 

ㅆhe Ministry of Health and Welfare announced that starting on the 4th, it will implement a “non-face-to-face direct delivery service for medical products” targeting rare disease patients, patients with severe intractable diseases, and severely ill children.

This is to ensure stable access to medical products for patients with rare diseases who are facing difficulties in securing necessary medical supplies due to the prolonged Middle East conflict.

Target conditions include short bowel syndrome, Cornelia de Lange syndrome, Pompe disease, and biliary atresia. Medical products (including pharmaceuticals and medical devices) in high demand for each disease group, such as syringes and IV lines, are included in the remote delivery program.

The Ministry will provide one-stop support through the telemedicine platform ‘Soldoc,’ which allows patients to consult with representatives via chat and make product purchases and delivery after patients and caregivers go through the verification process.

In the future, the model will expand to include customized in-person and remote care, collaboration between large and local hospitals, and delivery of pharmaceuticals and medical supplies.

On the 3rd, Minister Eun-kyeong Jeong held a roundtable meeting at Seoul National University Hospital Rare Disease Center with representatives from the Korean Organization for Rare Diseases, SNUH medical staff, and the Soldoc platform to discuss the initiative.

During the meeting, participants shared challenges faced by rare disease patients due to the Middle East conflict, and decided to immediately launch a direct delivery service for medical supplies in collaboration with the telemedicine platform Soldoc.

Patients with rare diseases are defined as those suffering from rare conditions affecting 20,000 people or fewer, as stipulated by the Rare Disease Management Act. Among these patients, those who must manage their conditions at home using medical supplies such as syringes and IV sets are facing difficulties due to rising prices and shortages of medical supplies caused by the war in the Middle East.

In fact, Mr. A, a caregiver for a patient with short bowel syndrome, expressed his anxiety, saying, “I was worried because the IV sets I used to buy online were often out of stock due to the situation in the Middle East.”

Ms. B, who cares for a child with Cornelia de Lange syndrome, also said, “Syringes and disposable vials are essential for the children’s nutritional support (enteral feeding) and medication administration, so I was worried I wouldn’t be able to obtain the supplies I usually buy from online shopping sites.”

Ultimately, the difficulties in securing medical supplies purchased through online shopping sites due to the fallout from the Middle East conflict led to a partnership between the Ministry of Health and Welfare and the telemedicine platform SolDoc.

Unlike general online shopping sites, Soldoc has a system in place to verify eligibility, being linked with medical institutions to confirm whether a patient has a rare disease.

Through this system, when a patient with a rare disease or their caregiver submits a purchase request via the internet or app, eligibility verification is easily conducted through the National Health Insurance Service system.

Once verified, they can purchase products and receive delivery, paying out-of-pocket for non-reimbursed items.

For items covered under medical expense reimbursement that require prescriptions, patients can consult doctors via telemedicine before purchase. Claims are handled by the provider, and patients only pay their coinsured share.

Items available include syringes, infusion sets, suction tips, suction catheters, sterile saline, and disinfectant swabs.

The Ministry plans to expand the program to include patients with severe intractable diseases and children receiving medical expense support, if necessary.

Additionally, the Ministry is considering pharmaceutical delivery for urgent cases.

Telemedicine will be formally implemented in December, following revisions to the Medical Service Act. The revised law allows telemedicine for rare disease patients.

In particular, patients with rare diseases can receive telemedicine services even at hospital-level or higher medical institutions, and the delivery of drugs and supplies is also permitted. The Ministry plans to strengthen services focused on those requiring essential medical services through telemedicine before the law takes effect.

Minister Eun-kyeong Jeong promised, “The state and society will take responsibility to ensure that patients are not marginalized or left in anxiety simply because their diseases are rare. We will provide financial support for the cost of medical supplies if needed after reviewing the burden of medical supply costs.”

Meanwhile, on the same day, Minister Jeong, Soon-heon Kwak, Director General of Health and Medical Policy, Jin-hyang Jeong, Secretary General of the Korean Organization for Rare Diseases, seven patients, and six medical staff members, including Joong-shin Park, Vice President for Medical Services at Seoul National University Hospital, held a staff meeting at Seoul National University Hospital in Jongno-gu, Seoul, after the roundtable meeting.