About RD

National Health Insurance Fund

Global Budget Payment System- Striving For Orphan Drug Budget

Starting in July 1, 2004, the system of "Global budget of the National Health Insurance" was implemented. Since there are limited resources, hospitals have budgetary constraints which regulates serious disease patients care to the sidelines. Months before the implementation of NHI, TFRD had been conducting a questionnaire for patients to find the best specialists.

Furthermore, the foundation requested, during the 8th conference of the "Committee for the Review and Examination of Rare Diseases Prevention and Orphan Drugs" that the Bureau of National Health Insurance find a solution to counteract the potential negative impact the Global Budget of National Health Insurance may have on rare disease patients right to receive proper medical care. The foundation met frequently with the Bureau of National Health Insurance and the National Health Insurance Medical Fee Agreement Commission to discuss and find a resolution.   

After extensive lobbying efforts by the foundation, on June 29, 2004, the deputy Minister of the Department of Health Mr. Hung-Ren Chang called and expressed his interest and concern. That same day, the various departments of the Bureau of National Insurance received written notices regarding the implementation, protection, and monitoring of rare disease medical care when signing management plans with various hospitals. They would strictly supervise the hospital's execution of the plans.   

By September 2004, the Bureau of National Health Insurance gave a positive response that starting in 2005, there will be a fund of $2.2 billion NT dollars allocated specifically to protect the rights, medication and access to drugs for rare disease patients. For 2006, the Bureau of National Health Insurance has granted a global budget $ 2.6 billion NT dollars specifically for patients with hemophilia and rare diseases. In 2007 and 2008, rare diseases and hemophilia paitents were granted 3 billion NT dollars and 3.6 billion NT dollars of golbal budget. We still continue to fight for constant and stable funding for rare disease patients in the future. 

Categorized as Catastrophic Illness

In July 1994, the National Health Insurance Act was enacted, bringing medical care insurance to the public mass. From that point forward, individual risks were covered by the nation and the medical burdens for rare disease sufferers reduced dramatically.

Since the implementation of national health insurance, many patients have sought care rather than give up on treatment. National health insurance alleviated the burden of bludgeoning medical bills.

However, rare disease patients are different. They still have enormous medical bills even though their illnesses are incurable and they fit the definition of catastrophic illness: Still, about 20-30% of rare disease patients are not eligible to receive the catastrophic illness coverage and must handle part of the medical costs on their own. In the long run, the costs are too taxing for the average family.

TFRD recognized the seriousness and urgency of the problem, and had been advocating the classification of rare diseases under catastrophic illnesses through different channels.

In 2002, the Department of Health finally responded positively to our request. Today, rare disease patients no longer have to shoulder the burden of medical costs on their own. Their right to receive medical care is further ensured. Through the foundation's hard work, on August 23, 2002, the Bureau of National Health Insurance formally announced that rare diseases are under the category of catastrophic illnesses. 

Patients with rare diseases are covered for most of their medical needs and no longer need to renew their NHI cards. As for rare diseases that have not been reviewed or officially proclaimed as rare diseases, the Department of Health promises to assist patients to receive benefits on an ad-hoc basis.

Strive for patients of specific disease

Activate the regulations on medication subsidy to secure patients’ life

In order to protect patients’ rights for medication, the Rare Disease Control and Orphan Drug Act had guaranteed the basic rights for the use of medications. However, medication for rare disorders still needs to go through a prolonged reviewing process by the National Health Insurance system.

Ming-Ming, a five-year-old child who was diagnosed with aHUS, had a serious infection after catching a cold. Ming-Ming needed to inject Eculizumab immediately or might lose his life due to severe uremia. Although Eculizumab was on the list of Orphan Drugs at the time, it was not covered by the National Health Insurance. TFRD activated the subsidy system and negotiated with the pharmaceutical company to provide Eculizumab, which costs NT$200,000 per shot. Ming-Ming’s life was saved thanks to the efforts.

The reviewing process of National Health Insurance medical coverage takes a long time, but life cannot wait. The Ministry of Health and Welfare agreed to offer the six-month medication subsidy in January 2015 due to TFRD’s lobbying. The new regulation  subsidizes partial expenses when medications for rare disorders are not covered or are under reviewing processes by the National Health Insurance. It is a pioneering act since the Rare Disease Control and Orphan Drug Act was publicized 15 years ago.

Regulations on Medical Care Subsidization for Rare Diseases: Art.7

People with Disabilities Rights Protection Act

►1980.06.02    Announcement 
►2001.11.21    Listing of rare diseases under the disabled classification 

"We are not just patients with medical needs. We are also citizens who have the right to be an integral part of our society!" 

Before the 5th amendment of the People with Disabilities Rights Protection Act, rare disease patients weren't protected by the law. Patients with physical and mental disability were categorized according to their disabled situations. However, it was extremely difficult for rare disease patients to fit into any particular category.

For instance, patients with metabolic disorders couldn't be described as disabled, and could only be defined as "chromosome disorders." For patients of Multiple Sclerosis, their syndromes may vary each time the disease strikes them. Therefore, TFRD lobbied the government to include rare disease patients into the People with Disabilities Rights Protection Act, and furthermore, to establish a new category as "rare diseases."

This way, patients of rare diseases, no matter what their syndromes and different disability situations are, they can all receive the same protection under this act, including financial assistance, social welfare services, medical care, rehabilitation, special education subsidies and so forth. Also, for future policy makers, they would have to take rare disease patients into serious consideration.

After long periods of lobbying and promotional efforts by the TFRD, in October of 2001, the Act finally covered people afflicted with rare diseases and thus unveiled a new era in the rights of rare disease patients. This highlighted the fact that patients are not only patients with medical needs, but more importantly they are citizens with the fundamental right to be an integral part our society! 

Currently, with the confirmation from a medical doctor, those who have been adversely affected by a rare disease can receive the disability pamphlet specific to the level of their disability (extremely disabled, seriously disabled, disabled, mildly disabled), to use as proof to apply for relevant benefits.

Consequently, not only can rare disease patients receive medical support and protection through the Rare Disease Control and Orphan Drug Act and be free of barriers and injustices, they can also, as a result of the revised People with Disabilities Rights Protection Act. Actively participate as a member of society in areas such as employment, education and long-term care.

Article Content

ICF Disability Evaluation - Continue to follow-up

The amended disability evaluation was implemented in 2012. Under the amendment, holders of permanent disability identifications need to obtain the new identification between July 2015 and 2019.

In order to assist patients to have better understanding of the amendment and to protect their rights, TFRD hosted three ICF Disability Evaluation Seminars for Rare Disorders on June 28th in Taipei in 2014, May 24th in Taichung and June 6th in Kaohsiung in 2015. Besides explaining the information and documentation required for the new disability identification, the seminars also introduced the subsidy and resources available in each county and city.

CRPD - Reviewing the laws and making changes

In order to protect the equal opportunities for persons with disabilities to participate in society, politics, economics, culture, etc., the Enforcement Act of the Convention on the Rights of Persons with Disabilities was publicized and implemented in December 2014. Under Article 6 of the Act, a committee for the promotion of the benefits of persons with disabilities was established under the Executive Yuan. The committee has drafted“Plan for implementing the Convention on the Rights of Persons with Disabilities” and held regular meetings to review potential violations of the CRPD in laws and regulations. The founder of TFRD, Serena Wu, was invited to be a member of the committee due to her contributions to rare disorders and disadvantaged patients.

The CRPD raised the rights from basic needs to the level of defending self-dignity. Persons with disabilities should have the same rights as normal persons. The committee demanded the government to adjust social structures and recognizing patients’ rights. During the committee’s meetings, TFRD actively participated in the reviews of laws and regulations and drew attentions to the challenges faced by patients. Together, the advocacy groups and TFRD spoke out for the persons with disabilities.

Lobbying is a challenging and time-consuming job. The accomplishments could not be done or demonstrated in a short time. But if we work together to advocate for the rights for patients, we can make step-by-step changes to our life and society.

CRPD in Taiwan