Taiwan Hepatitis Information & Care Association (THICA)

DESCRIPTION

“Taiwan Hepatitis Information & Care Association” (THICA) started as a social media platform for Taiwanese patients with viral hepatitis to share their knowledges and experiences online. This was time when numerous hepatitis C patients worldwide weren’t able to access breakthrough medications that cure hepatitis C within 12 weeks. Taiwan is one of the countries that are highly affected by hepatitis, with about 12% of its population infected with hepatitis B or C virus. Historically, hepatitis B was named a national disease of Taiwan since early 1980s. Today, hepatitis-related liver cirrhosis and cancer are still one of the leading causes for early mortality. In 2013, breakthrough developments of novel direct antiviral agents were invented, and hepatitis C becomes an easily curable disease. However, access to treatment was extremely difficult, and patients and doctors lack knowledge of the latest development. The idea of forming a social media-based hepatitis patient group was formed, with the hopes of promoting awareness, enhancing patients’ interaction, improving research environment, and eliminating viral hepatitis as the utmost objective.

Within a couple years, the patient group has grown to nearly 10 thousand members. Many thousands of them have found ways to access affordable treatments and cured hepatitis C infection. Within the patient group, doctors, volunteers and activists spent countless hours and efforts to educate and help patients achieve best treatment outcome. In order to continue supporting patients with hepatitis, and to organize the patient group into a more transparent and effective entity, the governing board of the patient group decided to formally register as a civil society organization under the law of Taiwan. Fifty-one hepatitis patients or their family members around all corners of Taiwan collectively signed a petition to establish a nation-wide patient association in 2018. THICA was then formally established on January 13, 2019, and approved by the Ministry of Interior of Taiwan two months later.

THICA is a legally binding, non-for-profit civil society organization based in Taiwan. The main goals of THICA are to share latest and accurate information about hepatitis and liver diseases, to promote awareness, prevention, treatment and care for liver health, and to link patients to appropriate medical care. When possible, the organization also provides financial support for those who cannot afford medical costs. THICA also fights for the basic patient rights to access appropriate medical care, and help the world achieve the goal of elimination of hepatitis. THICA is governed by a group of board members who are themselves hepatitis B or C patients, or their family members. The advisory board includes several medical practitioners, scholars, nurses, pharmacists, lawyers, and legislators, and there are currently about 150 voting members, most of them are hepatitis patients or their family members from all corners within Taiwan.

ACTIVITIES

Operate patient groups on social media.
Share knowledges and foster discussion.
Update latest development for a cure of hepatitis B.
Provide consultation, support, and linkage to care.
Offer financial support to low-income and student patients.
Advocate to improve health coverage for all.
Organize patient conferences.
Provide education forum.
Establish local patient association.
Provide free screening for hepatitis and liver cancer.
Collaborate with global partners.