SHANGHAI, March 1, 2022 /PRNewswire/ -- "When Zixu was about 10 months old, he already seemed different from other children. He has curved fingers, a gradually bulging belly, and his intelligence also grows slowly," Zixu's mother calmly recounted the process of taking her child to seek medical treatment. "Out of concerns and worries, we took our kid to see a doctor, but the hospital was unable to give a definite diagnosis."
"That's how we started our journey across the country, from the small hospital in our hometown to big hospitals. We visited more than 20 hospitals and 30 or maybe 40 departments in different parts of the country, but still got no results," Zixu's mother said. "Our efforts finally paid off, and a famous hospital in Shanghai gave us the diagnosis. The doctor told me that my son had contracted a rare disease called mucopolysaccharide storage disease."
As a matter of fact, mucopolysaccharide storage disease is an extremely rare disease that was included in the First Catalogue of Rare Diseases in 2018. Patients with this disease, due to an excessive accumulation of mucopolysaccharides in their bodies, have distorted face, slow growth and often suffer from heart and lung failure.
Currently, the domestic drug that can treat this disease is Hunterase developed by CANbridge Pharmaceuticals. It is the first rare disease drug successfully commercialized in China by CANbridge, and a new-generation enzyme replacement therapy for the treatment of mucopolysaccharide storage disease in China. It has been granted orphan drug status by the U.S. Food and Drug Administration (FDA) and received priority review status from the National Medical Products Administration of China. The official launch of Hunterase in China brings hope of a new life to countless patients suffering from mucopolysaccharide storage disease in China, including Zixu.
"Where there is a way, there is a future"
Although domestic drugs for mucopolysaccharide storage disease are already available, Zixu's mother is still waiting for the day when the drugs are included in the medical insurance catalog due to the high drug prices, but the adjustment of the medical insurance catalog is not going to happen easily, so the task of securing her child's medication needs weighs heavily on her heart. "The cost of medication is too high. I believe that 99% of families cannot afford it." Speaking of those days, Zixu's mother's eyes sparkled with tears.
It can be said that for high-value rare disease drugs, the high price has been the main barrier blocking many rare disease patients from using the drugs. In order to benefit more patients, MediTrust Health and CANbridge have entered into cooperation on innovative payment and launched the "Hunterase for a New Life" patient benefit program, with the aim of reducing the financial burden of patients using Hunterase to treat mucopolysaccharide storage disease.
"We didn't want to lose this valuable opportunity, so we joined as soon as we heard the good news. Now, with insurance coverage, we are paying just over 1,000 yuan per month, and we no longer have to worry about drug prices." Speaking these words, Zixu's mother's eyes began to sparkle, "I'm truly grateful to your support and help. The child is our future. As long as the child can be saved, we're confident that things will get better and better."
The smiles of patients and families are the source of motivation for MediTrust Health, By launching the "Hunterase for a New Life" patient benefit program with CANbridge, we aim to relieve the financial burden of patients through multiple guarantees for their use of drugs, so that the drugs are not just available but also affordable to more patients.
Up to now, with MediTrust Health's support, Hunterase has already been included in several government-directed, city-based customized commercial medical insurance schemes such as Su Hui Bao, Zhou Hui Bao, Hu Hui Bao, and Hui Jia Bao, providing protection to more patients. Going forward, MediTrust Health will actively promote the connectivity of rare disease diagnosis and treatment, so that more patients with mucopolysaccharide storage disease can enjoy the benefits of the drugs and bear less financial burden when taking medication.
With iCare Clover, hope for rare disease patients is not rare any more
Without doubt, Zixu is lucky to have received help from the "Hunterase for a New Life" program, but more rare disease patients are still troubled with the disease. In fact, mucopolysaccharide storage disease is only the tip of the iceberg of known rare diseases. According to relevant data, there are currently 6,000 to 7,000 identified rare diseases worldwide, taking up an approximately 10% share of all human diseases. These patients suffer from unspeakable pains every minute and second, and the burden on their families is as heavy as mountains. Apart from the physical pain, the patients are also struggling with growing mental stress due to the lack of understanding by others.
During the adjustment of the national medical insurance catalog in 2021, seven rare disease drugs including Nusinersen entered the catalog through negotiation, showing a ray of hope to rare disease patients. However, this is far from enough. Due to China's huge population base, rare diseases are actually not rare in this country. There are now more than 20 million patients with various rare diseases in China. Most of these patients, which is a large group combined, are confronted with the difficulties of high misdiagnosis rate, long diagnosis time, low treatment rate, lack of medicine, limited access to medical coverage, and heavy economic burden.
But the good news is, the hope for Chinese patients is dawning. With the acceleration of drug approval in China, the number of approved rare disease drugs has grown in recent years. According to statistics, there are 87 drugs with clear indications for rare diseases in China, covering 43 rare diseases, of which 58 drugs have been included in the national medical insurance program following the negotiations at the end of 2021, covering a total of 29 rare diseases.
In addition to pharmaceutical companies, many non-government players are also pushing for the drug coverage of rare diseases. For example, charitable organizations have been encouraging non-government stakeholders to join "multi-party" payment; innovative payment platforms have created a multi-layered patient service and protection system that puts the patient's interests at the center; commercial insurance companies are looking for innovative ways to cover the payment of rare disease drugs to share the risks to ensure drug coverage.
No small group should be abandoned. As a leading innovative medical and health service platform in the industry, MediTrust Health is also showing its value in the field of protecting the health of rare disease patients, so that more rare disease patients can bathe in the sunshine of health as Zixu. On May 31, 2021, MediTrust Health officially established the "iCare Clover Care Center for Rare Diseases". By pooling the resources from the whole society, it helps improve the accessibility and convenience of medical treatment and medication for patients with rare diseases and overcome the problems in the payment of medical services. Through a range of services such as innovative commercial health insurance products, expanded catalog of city-based universal insurance, innovative payment and patient services and rare disease care fund, the program aims to relieve the financial burden on patients.
As a platform of one-stop solutions for rare disease patients in China, the "iCare Clover Care Center for Rare Diseases" further reduced the financial burden of rare disease patients and their families in 2021, improved the accessibility to medicines for rare disease patients, and raised the public awareness of rare diseases. To date, the "iCare Clover Care Center for Rare Diseases" has covered several rare disease companies, benefiting more than 1,000 patients, settling nearly 30 million yuan of payment. Among them, after the opening of application for the rare disease care fund at the end of November 2021, over 200 applicants signed up for the program, involving more than 10 types of rare disease drugs. The number of applicants for Nusinersen, more than 120 in total, was the highest, and the assistance fund amounted to 700,000 yuan.
In terms of commercial health insurance and city-based insurance, MediTrust Health has increased the coverage of rare disease drugs by expanding the special drug catalog on the basis of ensuring the sustainability of the program. Up to now, more than 31 city-based insurance programs that receive the special drug support services of MediTrust Health have included rare diseases in their catalog, and the total number of subscribers has exceeded 40 million.
As the founder of the iCare Clover brand and the owner of the iCare platform, MediTrust Health has an unshirkable responsibility to help Chinese rare disease patients embrace a healthy life. On the occasion of the 15th Rare Disease Day, MediTrust Health will continue to provide a full range of services to rare disease patients, build the protective "wall" for rare disease patients through innovative payment solutions, and promote the further development and improvement of China's rare disease diagnosis and treatment system. It is hoped that with the joint efforts of fellow stakeholders in China, the hope of rare disease patients will not be "rare" any more and this light of hope will grow wider and brighter in the future.