Summary of Key Points
The Huiminbao (a city-specific commercial supplementary medical insurance) has recently adjusted its compensation policies, such as reducing the reimbursement rate for pre-existing conditions and setting limits on the cost of expensive special medications. The intention behind these changes is to balance the principles of “universal coverage” and “sustainability.” However, this has led to a significant increase in financial pressure for families affected by rare diseases, such as those with hypophosphatemic rickets. For example, the annual out-of-pocket cost for Xu Ya’s daughter has risen from 150,000 yuan to 500,000 yuan, making it nearly impossible to continue her treatment. The underlying issue is the “adverse selection” phenomenon faced by Huiminbao: healthy individuals are less likely to renew their insurance, while patients with rare diseases remain enrolled, quickly depleting the insurance fund. Given that the incidence of rare diseases is low and the cost of medications is high, commercial insurance struggles to provide adequate coverage. Current discussions focus on potential solutions, including establishing transitional mechanisms, setting up special funds, and improving legislation.
The Shock for Families Affected by Rare Diseases: Compensation Adjustments Make Treatment Unaffordable
Xu Ya’s daughter is a typical case. She suffers from hypophosphatemic rickets and requires the expensive medication brosofusonab, which costs 700,000 yuan per year. Previously, Huiminbao would cover most of the cost, leaving an out-of-pocket expense of 150,000 yuan, which was still manageable for her family. However, with the new policy, the out-of-pocket cost has risen to 500,000 yuan, which is beyond their means.
This medication is crucial for her treatment: traditional methods involve drinking phosphorus solutions every 2-3 hours, which are inconvenient and can lead to kidney stones; in contrast, brosofusonab requires only one injection every two weeks and has shown significant improvement in her condition (her legs have straightened, allowing her to participate in physical activities). If she stops the treatment, the progress made over the past three years (improved teeth, increased leg strength) could be lost within 1-1.5 years. Without proper management during her critical skeletal development period (ages 14-16), she may experience frequent fractures in her twenties and thirties and might end up using a wheelchair or being bedridden in her forties or fifties.
This is not an isolated issue; this year, many regions have reduced the reimbursement rate for pre-existing conditions under Huiminbao from 50% to 30% or even 20%, affecting numerous patients with rare diseases.
The Truth Behind Huiminbao’s Policy Changes: Why Can’t It Continue to Be “Generous”?
The adjustments to Huiminbao are not specifically targeted at rare diseases but are a result of financial pressures.
1. Adverse Selection Risk: Initially, Huiminbao attracted many participants with its low premium and no health restrictions, allowing for better risk distribution. However, now healthy young people feel that the insurance is not worth the cost and are opting out. Meanwhile, patients with rare diseases continue to enroll, filling the insurance pool with those who require compensation, creating a “death spiral”: fewer healthy individuals means lower premium revenue, leading to either price increases or reduced compensation, which in turn discourages further enrollment and potentially results in the product’s demise.
2. Excessive Compensation Pressure: Insurance companies report that the compensation rate for Huiminbao in some cities has reached 90%, and with operating costs, it is barely profitable. If the cost of treating a rare disease medication amounts to tens of millions of yuan per year, it can quickly deplete the insurance fund. Therefore, companies are forced to reduce compensation rates to manage their risks.
The Dilemma in Providing Coverage for Rare Diseases: Why Can’t Commercial Insurance Solve This Problem?
Rare diseases pose a significant challenge for commercial insurance:
1. Failure to Meet the Law of Large Numbers: Commercial insurance relies on the majority covering the costs of a minority, but the incidence of rare diseases is extremely low (e.g., 1-3 cases per 100,000 people), making it difficult for insurers to predict and price the risk accurately.
2. High and Fixed Medication Costs: The annual cost of specialized medications for rare diseases (such as brosofusonab) is extremely high, and since patients need long-term treatment, these expenses are a significant fixed burden for insurers.
3. Lack of Data: Insurers lack reliable data on the incidence and treatment costs of rare diseases, making it impossible to develop effective insurance products.
Possible Solutions to Maintain Huiminbao While Helping Patients with Rare Diseases:
Experts suggest several approaches:
1. Establish Transitional Mechanisms: Provide patients with a grace period during policy adjustments to allow them time to adapt to the new requirements and avoid sudden interruptions in treatment.
2. Set Up Special Funds for Rare Diseases: The government, individuals, and society can contribute to fund dedicated accounts for rare disease treatments, without using Huiminbao’s resources, thus ensuring both the sustainability of the insurance program and providing necessary support for patients.
3. Tiered Premiums for Huiminbao: Implement a multi-tier premium structure where healthy individuals pay less, while those with pre-existing conditions pay more but still receive coverage, encouraging both enrollment and adequate protection.
4. Improving Legislation and Support Systems: Promote legislation on rare disease prevention and treatment, integrating it into the healthcare system to create a comprehensive safety net.
In conclusion, providing coverage for rare diseases requires a collaborative effort from governments, insurance companies, pharmaceutical companies, and society. Only by working together can we ensure that Huiminbao continues to be effective while ensuring that patients with rare diseases do not face inadequate medical support.