Nimit Tienudom

Nimit Tienudom is enabling the Thai health system to provide affordable treatment for chronic disease patients, by lowering the cost of essential drugs and expanding the role of patients in managing their long-term treatment, in equal partnership with health professionals.

Nimit is leading the first citizen-based effort to comprehensively address the treatment of chronic diseases in Thailand. His work is changing the nature of interaction between patients and doctors, replacing one-way prescriptions with collaborative treatment groups in hundreds of low-income public hospitals across the country. Nimit’s work is also changing the relationship between patients and the pharmaceutical industry. He is raising the visibility of chronic disease patients as key stakeholders in determining the cost of essential drugs. Nimit has enabled unprecedented cross-sectoral partnership between patient groups, public health professionals, and consumer rights advocates. As a result, Thailand is the first country in the world to extend compulsory licensing, a common cost-cutting mechanism, from HIV drugs to major chronic illnesses such as heart disease, cancer, and some mental disorders. By integrating his work with the evolution of Thailand’s first universal health insurance plan, Nimit is increasing access to quality treatment for millions of chronic disease patients, by ensuring citizen participation in healthcare policy.

Chronic diseases require long-term and generally expensive treatment, which Thailand’s healthcare system has been unable to provide for most of the population. For instance, the national budget for healthcare is sufficient to support only some 15 to 20 percent of people living with HIV/AIDS and heart disease, which are consistently among the top three causes of death for Thais. Despite a universal health coverage policy enacted in 2001 and existing health insurance for public and private employees, most chronic disease patients are left to fend for themselves. Many patients continue to die from the inability to afford available treatment. Of the 600,000 Thais who have died from HIV/AIDS, most died from a lack of treatment. There are nearly 600,000 more Thais living with HIV/AIDS, but a monthly dose of medicine cost more than the average office worker’s salary. For other chronic diseases such as cancer and mental disorders, many patients endure more debilitative side effects and suffer from earlier deaths, since they cannot afford the most effective medicine.

Chronic disease patients face additional obstacles to quality treatment at public hospitals, the main source of health services for low-income populations. Already understaffed, most public doctors prescribe medicine without much interaction with the patient, often leading to irregular drug adherence and ineffective treatment. In addition, public doctors receive meager salaries and are prone to influence from private pharmaceutical companies, which provide financial benefits in exchange for prescriptions of higher cost patented drugs, even when cheaper generic medicine is available. In fact, the influence of pharmaceutical companies has pervaded the Thai medical industry, well into medical classrooms and day-to-day interactions between doctors. It is more common to hear professors and doctors speak of medicines by the patented brand names, rather than the generic drug names. Unlike victims of accidents or other types of patients, chronic disease patients have long-term recurring need for treatment and, therefore, particularly suffer from the high cost of patented drugs.

Intellectual property rights are a legal mechanism to stimulate innovations, including medical treatment. Among other benefits, it allows for the registration of patents, granting innovators the exclusive right to reproduce the innovation for a period of time. In the case of pharmaceutical patents, it has allowed private companies to become exclusive manufacturers of medicines, some of which are the only available or the most effective treatment for certain diseases. Without market competition, pharmaceutical companies are able to charge any price for these essential drugs. Contrary to common perception, the set prices are not always based on the cost of medical research. Many pharmaceutical companies benefit from unusually high profit margins, by purchasing drug formulas at a small cost from publically-funded laboratories, such as universities and research institutes. For instance, in 1996, the U.S. National Institute of Health spent US$1 billion dollars on drug and vaccine development while receiving only US$27M in royalties. Pharmaceutical companies in the United States, however, consistently earn average net profits of two to four times more than other major businesses. Unlike other businesses, pharmaceutical industry earnings are generally unaffected by economic downturns, because medicine is a fundamental human need.

Ever since the beginning of international negotiations on trade-related intellectual property rights, all governments have been guaranteed the right to market interventions for public interest. Low-income countries rarely exercise this right, however, due to threats of trade repercussions. In 1989, the American government withdrew Thailand from a list of preferred export suppliers, claiming that it needed to revise its patent laws. Since then, Thailand has enacted the revised Patent Act in 1992 to provide additional market monopoly for imported pharmaceutical products. In 1999, Thailand revised the Patent Act again to forego the requirement of technology transfer in exchange for patent protection, as well as abolished a regulatory body called the Pharmaceutical Patent Review Board. In contrast, high-income governments consistently override patents to intervene local markets. In 2006 alone, the U.S. Supreme Court granted compulsory licenses to Johnson & Johnson, Microsoft, Toyota, DirecTV, eBay, among others, allowing these companies to use patents without permission of the owner.

Nimit is enabling patient participation in managing healthcare, on the ground and at the policy level. By transforming the passive role of the sick into active partners with public health providers, Nimit is creating long-term guarantees that available treatment is effectively delivered to low-income populations.

At AIDS Access Foundation, Nimit is among the first in Thailand to recognize the common problem of treatment for AIDS and other chronic illnesses. When treatment was first available in the mid 1990s, many doctors dismissed low-income populations as unable to adhere to the expensive treatment. In 1996, he opened a new office in Chiang Rai, northern Thailand, the hardest hit region of the epidemic, and began setting up a new service infrastructure to deliver recurring treatment to rural and small-town populations, even before HIV/AIDS drugs became available. Nimit has since trained over a thousand people living with HIV/AIDS to work with one another and with public health personnel. People with HIV/AIDS have begun to form neighborhood chapters and hold regular meetings at their local public hospitals, inviting doctors and nurses to join and answer questions. Healthcare providers have begun to recognize the value of patient participation. People with HIV/AIDS are able to provide personalized care for one another, through peer counseling and home visits, which in turn leads to more regular hospital visits. To date, these neighborhood chapters are now based in over 400 hospitals across Thailand, known as “Holistic Care Centers” for combining medical and social health services. Nimit has prepared this new service infrastructure as a crucial tool for delivering AIDS and other chronic disease treatments, which require regular adherence to be effective.

The other aspect of Nimit’s challenge is to work with healthcare administrators to enable patients’ access to chronic treatment at the policy level. In 1999, he coordinated the first public gathering of Thai people with HIV/AIDS, after a decade of public discrimination. For three days and three nights, over 400 people with HIV/AIDS sat in front of the Ministry of Public Health. They demanded that the Ministry issue a compulsory license for public interest, to override the patent on one AIDS medicine called didanosine (ddI). The drug was invented by the U.S. National Institute of Health and purchased by a private American company, which patented the drug in Thailand. With exclusive rights to market ddI, the company sold it at a price beyond the affordability of most Thai patients. Due to public pressure, the Ministry of Public Health launched a pilot trial of free AIDS treatment in 2000, and two years later expanded it into a national trial program. The program benefited 20,000 people, only a fraction compared to the hundreds of thousands with HIV/AIDS and the estimated death toll of some 50,000 per year. Nonetheless, the drastic results of treatment were beginnin g to inspire local health providers as well as policymakers. In addition, public gatherings of people with HIV/AIDS were increasing the recognition of patients as important stakeholders in healthcare decisions, particularly in the press and the public eye.

In addition to increasing the visibility of patients, Nimit works with lawyers and consumer rights advocates to establish legal legitimacy to patients’ demands. In 2001, his organization and nine people with HIV/AIDS filed a lawsuit against the Department of Intellectual Property for unlawful registration of the ddI patent, which was amended to remove no specified dose range, allowing the patent owner Bristol-Myers Squibb to produce infinite variations of the drug. In late 2002, the Central Intellectual Property and International Trade Court ruled in the patients’ favor, noting that “medicine is one of the fundamental factors necessary for human beings, as distinct from other products or other inventions that consumers may or may not choose for consumption” and the “lack of access to medicines due to high price prejudices the human rights of patients to proper medical treatment.” This verdict affirmed the legal right of patients as consumers to sue over pharmaceutical patents, a legal precedent in Thailand and the region. Information drawn from this lawsuit also provided key evidence for another lawsuit, filed by a consumer rights organization, to revoke the ddI patent altogether. In January 2004, before the Court reached its verdict, Bristol-Myers Squibb gave up its patent in exchange for withdrawing both lawsuits—the earlier of which was being fought in appeals court. The settlement was signed by only two of the original plaintiffs, as seven had passed away from lack of treatment.

Nimit has been key in bringing patients and healthcare administrators to agreement, that medical treatment is not truly available until it is affordable. Between 2004 to 2006 the Ministry of Public Health invited Nimit to serve on the Subcommittee to Introduce Antiretroviral Drugs to the National Health Insurance Scheme. In October 2006, the Thai government guaranteed the universal right to receive AIDS treatment as part of the National Health Insurance Scheme, which cost every citizen 30 baht (US$1) per visit. One month later, the Health Ministry issued Thailand’s first compulsory license for efavirenz, an antiretroviral drug that demonstrated less aggressive side effects than similar drugs. Two months later in January 2007, the Health Ministry issued two more compulsory licenses. One was for Laponavir/Ritonavir, an antiretroviral drug needed by an estimated 10 percent of people who develop resistance to the first-line antiretroviral drugs each year. Another was the world’s first compulsory license for a heart disease drug, clopidogrel. Because heart disease is one of the top three causes of death among Thais almost every year, the demand for this anti-coagulent was as high as 20.5 million tablets per year. With the compulsory license, the Health Ministry opened the market to the lowest bidder and was able to purchase a generic version of the drug from India for 1.06 baht per tablet, compared to the original price of 70 baht per tablet. With market competition, the Ministry of Public Health estimates that six to twelve times more heart disease patients now have access to the necessary treatment.

With affordable medicine now in the national healthcare system, Nimit is working to ensure that they are actually delivered to patients at the hospital level. The estimated number of people receiving AIDS treatment is now over 200,000, with an estimated reduction of deaths by 80 percent. Of those receiving treatment, as much as 85 percent are adhering to their drug regime, largely due to the support network of peers and local healthcare providers at the Holistic Care Centers that Nimit helped establish. Over the next five years, he hopes to expand the network of Holistic Care Centers to 900 hospital locations across Thailand, each serving 100 to 500 members. He is also applying the same model of partnership between patients and local healthcare providers to support cancer patients, in response to the additional compulsory licenses Thailand issued in 2008 for four drugs that extend the life of lung and breast cancer patients. Last year, the National Health Security Board announced that it will finance 139 of these centers across Thailand.

Nimit is also working with medical students to improve healthcare service, by serving as a regular speaker on patient counseling and communications. He is designing educational tools to eliminate the common habit—among doctors, nurses, pharmacologists, and even medical professors—to refer to medicines by their trade names. With public campaigns, he aims to restore the patient’s trust in generic drugs, despite the powerful marketing efforts of pharmaceutical companies.

For long-term assurance that affordable healthcare is delivered to those in need, Nimit is working to establish formal representation for patient groups in the healthcare policymaking structure. To date, he has influenced the recent inclusion of HIV/AIDS and cancer patient representatives in a subcommittee to identify essential drugs with access problems, under the national health insurance scheme. Nimit plans to develop a lasting structure of patient participation that enables grassroots representation to be linked with national influence.

Nimit has learned the technical and legal complexities of the healthcare system through his experience in HIV/AIDS work, and by sheer determination. Nimit’s stubbornness, as he calls it, is combined with unyielding optimism in collective action, and has been the determining force of his life since childhood. Raised in Bangkok by working class parents, Nimit’s mother was his role model, as an assertive female head of household. In high school, Nimit initiated student collaborations that defied school tradition, for the better good. For instance, instead of following the annual tradition of contributing money to purchase a large candle to lead a religious holiday procession, Nimit convinced his classmates to each bring leftover candles from home, and together they molded a new, large candle for the ceremony.

Upon college graduation, Nimit worked in the Volunteer Training Department of Thai Volunteer Service, a key institution behind the development of Thai citizen sector leaders. Two years later, Nimit co-founded AIDS Access Foundation, an organization that emphasizes equal leadership. Nimit has stayed with the organization for twenty years, experiencing the changing nature of HIV/AIDS work, and the unnecessary deaths of many, many colleagues who could not afford treatment.

In 2004 Nimit was elected President of the Thai NGO Coalition on AIDS, a national body representing 168 national and international organizations. Today, he serves as Citizen Sector Representative on the National Health Security Board, overseeing the national health insurance scheme, responsible for delivering healthcare to 48.3 million people, or roughly 75 percent of the population.