Research resource flow, new technologies and the 10/90 gap in health research

 

Research resource flow, new technologies and the 10/90 gap in health research

By Dr. Gregor Wolbring [1]

for Forum 8 of the Global forum of health research and the ministerial summit on health research organized by the World Health Organization and hosted by the Mexican Government. Mexico City, 16-20 November 2004

 

 

Introduction

The Bangkok Declaration on Health Research for Development [2] reaffirms “that health is a basic human right” and “that Health research is essential for improvements not only in health but also in social and economic development”. It states that “social and health disparities, both within and between countries, are growing” and asks, that “given these global trends, a focus on social and gender equity should be central to health research.” It states that “health research, including the institutional arrangements, should be based on common underlying values” such as “a clear and strong ethical basis governing the design, conduct and use of research; the inclusion of a gender perspective; a commitment that knowledge derived from publicly funded research should be available and accessible to all; an understanding that research is an investment in human development; and a recognition that research should be inclusive, involving all stakeholders including civil society in partnerships at local, national, regional, and global levels. “ [3]

 

In this light, this paper explores the potential effects of nanotechnology and the converging of nanotechnology, biotechnology, information technology and cognitive neuro sciences (NBIC) on equity in health and health research and a governance model for inclusive health research that would meet the challenge of the Bangkok Declaration.

 

The state of emerging technologies

 

Science and technology (S & T) have had throughout history – and will have in the future – positive and negative consequences. S & T is not being developed and used in a value neutral environment and is the result of human activity imbued with intention and purpose and embodying the perspectives, purposes, prejudice, particular objectives and cultural, economical, ethical, moral frameworks of any given society in which the research takes place.

 

Nanotechnology is an emerging technology able to manipulate materials on an atomic or molecular scale [4] . Nanotechnology or nanosciences enables a new paradigm of science and technology which sees different technologies converging at the nanoscale namely (a) nanoscience and nanotechnology; (b) biotechnology and biomedicine, including genetic engineering; (c) information technology, including advanced computing and communications; (d) cognitive science, including cognitive neuroscience (“NBIC” nano-bio-info-cogno). The National Nanotech Initiative (USA) envisions applications for the converging of NBIC, in areas such as the environment, energy, water, weapons and other military applications, globalization, agriculture, space exploration, lifespan  extension, nanomedicine [5] (the preservation and improvement of human health using molecular tools and molecular knowledge of the human body [6] ) and enhancing human performances such as improving work efficiency and learning, enhancing individual sensory and cognitive capabilities and improving both individual and group creativity through the usage of highly effective communication techniques including brain-to-brain interactions and  human-machine interfaces. [7] Nanomedicine deserves specific monitoring as developments in this area will have great impact on health research.

 

The Bangkok Declaration on Health Research for Development [8] acknowledges that “rapid globalization, new understanding of human biology, and the information technology revolution pose new challenges and opportunities.”

 

I would argue that the converging of  NBIC-technologies not only gives new meaning to human biology, but also questions the very concepts of health and disease and what it means to be human [9] .

 

Two main models for health and disease (the medical, the social) have been part of the discourse of the governance of science and technology until now.

Within the medical model of health and disease, health is characterized as the normative functioning of biological systems, and disease is seen as the sub-normative functioning of biological systems. Medical/technological interventions on the level of the individuals are seen as the remedy of choice. On the global scale the disability-adjusted life year (DALY) emerged as a measure of the 'burden of disease' [10] to support this medical model of health and disease. However it has become increasingly clear that a purely medical model of health and disease and the concept of the DALY [11] are flawed. They result in too narrow a policy/research focus that fails to address health as a state of complete physical, mental and social well-being [12] , that ignores the co-requisites for health such as peace, shelter, education, social security, social relations, food, income, empowerment of women, a stable eco-system, sustainable resource use, social justice, respect for human rights and equity [13] and other key determinants of health, [14]  that  ascribe a "reduced value" to "lives lived with a disability"; equate disability with ill-health; and assume that "living with a disability" represents a net drain on society and that individuals with a disability lie somewhere between life and premature death. They also ignore the WHO aim “to ensure equal opportunities and promotion of human rights for people with disabilities, especially those who are poor”. [15]

 

A broader understanding of the concept of health and disease has since evolved. Increasingly, social determinants are included in evaluating health and disease. However even this broader understanding of health and disease still incorporates a devaluing concept of disability following a framework of normative and sub normative functioning of a person whereby normative and sub normative functioning is a reflection of individual or societal determinants, parameters. This is problematic in that rather than understanding human diversity as the norm and to be valued and protected, diversity and difference are labeled as non normative. Who and what is defined as the norm can vary depending on who or what is in vogue or considered valuable at any given time.

 

However aadvances in science and technology -- in particular the converging of nanotechnology, biotechnology, information technology and cognitive sciences (NBIC) - allow for a new definition of health itself (transhumanist model). NBIC ‘health products will make the addition of new -or improve on existing abilities of human beings- possible making it difficult if not impossible to distinguish between  ‘therapies towards a norm’ and ‘therapies which will exceed a norm leading to ‘improved’ norms and addition of new abilities to human beings

In accordance to the above, health is characterized not anymore as normative functioning but optimum functioning of biological systems and interpreted as the concept of feeling good about ones abilities, functioning and body structure. Disease in this case is identified in accordance with a negative self perception and a suboptimum functioning.

 

Under this transhumanist model, disabled people can opt to be fixed not only to a norm but also to be enhanced, augmented above the norm (e.g. giving bionic legs to amputees, which work better than the "normal" biological legs). This follows the transhumanist vision of today's so called "non-disabled" people who believe that every human body is defective -- the Transhumanist type. [16]   The transhumanist model is, in essence, a variation of the medical, individualistic, deficiency model.

 

 

The focus on a medical view of health, disability and disease and the increased ability of science and technology to intervene, change and modify characteristics of humans and their body, increases the tendency within the industry and society to medicalize/transhumanize the human body, its characteristics, and its problems. This model leads to a subjective understanding of health in which anyone can consider themselves as "unhealthy" and could demand treatment for themselves based on a self-identified need. It leads to those with the most persuasive voice and economic clout controlling the research agenda and its applications. It results in "individualized" medicine and technological solutions for the self-identified problems of those who can afford the "fix" -- the affluent.  The solutions that emerge from this model lead, among other things, to an increase in the 10/90 gap and a growing inequity between poor and rich.

 

 

Health Research [17] governance

 

 

According to the Bangkok Declaration on Health Research for Development [18] an effective health research system requires: coherent and coordinated health research strategies and actions; an effective governance system;  a revitalized effort from all involved in health research to generate new knowledge which addresses the problems of the world's disadvantaged and it is the responsibility of an active civil society through their governments and other channels to set the direction for the health research system, nurture and support health research, and ensure that the outcomes of research are used to benefit all their peoples and the global community.”

 

The ‘World Report on Knowledge for better Health, [19] to be discussed in Mexico City at the ministerial summit on health research, has 7 key messages:

“1. Science must be turned into action to improve people’s health; it must focus more on

the “how” rather than the “why”, “where” or “what”

2. Knowledge must be accessible to all, in a form which is useful and can be acted upon

by different people and groups

3. All countries must create an environment in which research for health is seen as a

systematic effort, and will thus flourish

4. Research must be conducted according to universal ethical standards thus ensuring

that it will improve equity in health

5. A broader, more inclusive view of health research is needed and civil society has a

vital part to play

6. Research is an investment, not a cost, and governments must spend on it

7. Action Plan needed-now!”

 

How can these 7 key messages be fulfilled?

 

The Commission on Macroeconomics and Health recommended an 80% increase in the health budget of low-income countries between 2001 and 2015 and a seven-fold increase in donor assistance to these countries for health over the same period, in its December 2001 Report. [20] Insert 5.4 shows a variety of recommendations given by a variety of groups. The Commission on Health Research for Development, convened in 1990, recommended that at least 2% of national health expenditures in low- and middle-income countries be allocated to health research and capacity building. [21] The executive summary of the 10/90 Report on Health Research 2003-2004 recommends:” Few priority-setting exercises for health and health research systematically take into account key actors and factors beyond the biomedical field (i.e. the individual, behavioral and community dimensions; sectors other than health which have a profound effect on the health status of a population; and macroeconomic policies); these dimensions need to be systematically included in the priority-setting exercises in the future, to ensure the most effective and efficient use of the limited resources available for health research. [22]

 

 

[23]

However so far very few of the recommendations have been met. As insert 6.7 [24] shows most low- and middle-income countries still have not met the target of allocating at least 2% of national health expenditures to health research and capacity building as recommended by the Commission on Health Research for Development in 1990. [25] It becomes apparent from Insert 6.4 [26] and the report: Resource flows in developing countries: selected country studies and practical examples by Andres de Francisco and Bienvenido Alano [27] that the majority of funding in R&D for health research comes from the developed countries and the industry.

 

In 1998 US$73.5 billion were spent in health R&D (or about 2.7 % of total health expenditures worldwide). Governments invested at least US$ 37 billion (50%), and the pharmaceutical industry US$30.5 billion (42%). Private, nonprofit and university funds provided the remaining US$6 billion (8 %). [28] The United States provided over half of this amount, investing US$19.5 billion. Japan contributed US$2.9 billion, Germany US$2.4 billion, France US$2.2 billion, the United Kingdom US$1.8 billion and Canada US$0.75 billion. Together, the G7 countries (including a rough estimate for Italy) accounted for 90% of total publicly funded health R&D in the high-income countries. All other high-income country governments together contributed US$3.5 billion.” [29]

 

 

 

Health Care Industry Statistics

 

National Health Expenditure Amounts, By Type of Expenditure, U.S.: Selected Calendar Years 1980-20121

In US$ Billions

 

Item

1980

1990

2000

2002

2003

2004

2010

2012

National Health Expenditures

$245.8

$696.0

$1,424.5

$1,547.6

$1,660.5

$1,778.8

$2,702.2

$3,079.8

Health Services and Supplies

$233.5

$669.6

$1,372.6

$1,492.9

$1,602.5

$1,717.2

$2,609.3

$2,974.6

Personal Health Care

$214.6

$609.4

$1,236.4

$1,331.4

$1,423.8

$1,526.4

$2,315.1

$2,639.1

Hospital Care

$101.5

$253.9

$451.2

$484.6

$511.2

$542.0

$770.9

$860.0

Professional Services

$67.3

$216.9

$462.4

$494.4

$529.6

$568.2

$872.7

$999.0

Physician and Clinical Services

$47.1

$157.5

$313.6

$334.0

$356.8

$381.4

$571.1

$646.4

Other Professional Services

$3.6

$18.2

$42.3

$44.8

$47.6

$51.3

$79.8

$90.9

Dental Services

$13.3

$31.5

$65.6

$70.1

$74.0

$78.2

$107.8

$118.3

Other Personal Health Care

$3.3

$9.6

$40.9

$45.5

$51.2

$57.3

$114.0

$143.4

Nursing Home and Home Health

$20.1

$65.3

$132.1

$139.9

$146.4

$154.2

$219.4

$247.7

Home Health Care

$2.4

$12.6

$33.2

$36.2

$38.3

$40.9

$60.4

$68.9

Nursing Home Care

$17.7

$52.7

$98.9

$103.7

$108.2

$113.3

$159.1

$178.8

Retail Outlet Sales of   Medical Products

$25.7

$73.3

$190.7

$212.5

$236.5

$262.0

$452.1

$532.4

Prescription Drugs

$12.0

$40.3

$140.6

$160.7

$182.1

$204.7

$373.3

$445.9

Other Medical Products

$13.7

$33.1

$50.1

$51.9

$54.4

$57.3

$78.8

$86.5

Durable Medical Equipment

$3.9

$10.6

$18.4

$19.3

$20.3

$21.6

$31.2

$34.8

Other Non-Durable Medical Products

$9.8

$22.5

$31.8

$32.6

$34.1

$35.7

$47.6

$51.7

Government Administration and Net Cost of Private Health Insurance

$12.1

$40.0

$89.7

$110.9

$123.9

$131.3

$197.3

$222.6

Government Public Health Activities

$6.7

$20.2

$46.4

$50.6

$54.8

$59.5

$96.9

$112.9

Investment

$12.3

$26.4

$52.0

$54.8

$58.0

$61.6

$93.0

$105.2

Research2

$5.5

$12.7

$32.8

$34.7

$36.8

$39.1

$61.9

$70.9

Construction

$6.8

$13.7

$19.2

$20.1

$21.2

$22.5

$31.1

$34.2

 Note: Numbers and percents may not add to totals because of rounding. Figures for 2002-2012 are forecasts.

1 The health spending projections were based on the 2001 version of the National Health Expenditures released in January 2003.

2 Research and development expenditures of drug companies and other manufacturers and providers of medical equipment and supplies are excluded from research expenditures. These research expenditures are implicitly included in the expenditure class in which the product falls, in that they are covered by the payment received for that product.

Sources: Centers for Medicare & Medicaid Services, Office of the Actuary.

[30]

 

 

Furthermore the report shows that: ”On a global basis, Latin American research publications focus mainly on biomedical and clinical research aspects, while studies on the health situation, health determinants and health services receive much less attention.” It goes on to state that, “Most of the research emerging from the South-East Asian countries studied was devoted to medical sciences, while health economics and social sciences received very little attention.” [31] The same is also true for rich countries. What we see is a preference for a very medical understanding of health and disease and a focus on medical solutions for the ‘medical root of ill health’, leading to an iincrease in the 10/90 gap and a growing inequity between poor and rich. One example of this 10/90 gap is that of 1393 new chemical entities marketed between 1975 and 1999, only 16 were for tropical diseases and tuberculosis, for which 99% of the global burden of disease is in low income countries and that there is a 13-fold greater chance of a drug being brought to market for central-nervous-system disorders or cancer than for a neglected disease. [32]   In 1993 just 10 countries accounted for 84% of global research and development expenditures and controlled 95% of the US patents of the past two decades. Moreover, more than 80% of patents granted in developing countries belong to residents of industrial countries. [33]

 

 

 

 

Health research and new technologies: the case of Biotechnology

Taking into account that the focus of health research is on the medical model of health and disease and that the pharmaceutical/biotechnology industry is responsible for 42% of health research, it comes as no surprise that biotechnology plays a big role in health research. In Canada genomic research is the biggest single ticket item of the Canadian Institutes of Health Research (CIHR). [34] A World Survey of Funding for Genomics Research [35] concludes that “the private sector (pharmaceutical, biotechnology, and genomic start-up firms) is a bigger funder of genomics than the public sector (government agencies and nonprofits organizations)” and “Seventy-six percent of publicly traded and 71 percent of privately held genomics firms are US-based (see table).  European and, to a lesser extent, Asian firms play a larger role among major pharmaceutical firms, but these remain almost exclusively in major developed economies, and much of the genomics even in foreign-owned firms is taking place in the United States.”

 

Government and Nonprofit Funding: Survey Results [36]

Funding in $US

(Listed in order of total funding for Year 2000)

 

1998

1999

2000 (est.)

National Human Genome Research Institute, NIH

210,891,000

270,733,000

326,391,000

Wellcome Trust

60,256,410

100,742,942

115,777,195

European Commission

21,344,717

104,602,510

89,968,511

US Department of Energy*

85,500,000

89,800,000

88,900,000

American Cancer Society

 

50,000,000

50,000,000

Knut and Alice Wallenberg Foundation

5,000,000

11,000,000

35,000,000

The SNP Consortium

 

28,000,000

22,000,000

Cancer Genome Anatomy, Mammalian Gene Collection, Genetic Annotation Initiative and related programs, National Cancer Institute (with co funding from other NIH institutes)

7,000,000

11,300,000

21,800,000

Howard Hughes Medical Institute

20,000,000

20,000,000

20,000,000

Kazusa DNA Research Institute

14,800,000

14,500,000

14,400,000

Imperial Cancer Research Fund

 

 

12,296,588

Centre National de Sequencage Genoscope

4,529,148

7,458,396

7,986,721

Katholieke Universiteit Leuven

5,000,000

5,100,000

5,200,000

Fondation Jean Dausset-CEPH

6,296,692

5,439,331

4,111,561

Merck Genome Research Institute#

3,700,000

 

 

National Institute of General Medical Sciences, NIH

3,000,000

3,200,000

3,500,000

Australian Genome Research Facility

610,687