This act shall be known and may be cited as the Health Research Fairness Act.
Administration of Public HealthHealth Research Fairness
Section § 439.900
This law section declares the official name of the act, which is the Health Research Fairness Act.
Health Research Fairness Act health research fairness in research
Section § 439.901
This law acknowledges several key points about the state of women's health research and its funding in the United States. First, it highlights that the National Institutes of Health (NIH) spends a small portion of its budget on research specifically targeting women's health issues, and notes that women are often underrepresented in medical research studies. As a result, treatments for women may be based on research conducted mainly on men.
It also discusses specific health issues affecting women, including breast cancer, AIDS, osteoporosis, and infertility, with statistics indicating that these areas have not received enough attention or funding. The law advocates for better prevention and early detection of women's health problems through more focused research efforts.
Finally, it notes that a revised NIH policy now requires women's inclusion in research studies in proportion to the prevalence of the conditions under study to ensure fair representation.
The Legislature finds and declares all of the following:
(a)CA Health & Safety Code § 439.901(a)
The National Institutes of Health (NIH), the nation’s major source of funding for medical research conducted in the United States, spends approximately 13 percent of its budget for research on conditions and diseases that are primarily women’s health issues. Although it is true that the great majority of the NIH research funds are expended for studies of diseases that affect both men and women, or for fundamental research that has significance for diseases affecting all segments of our population, women have not been adequately represented in research populations in major NIH-funded studies of diseases which affect both men and women.
(b)CA Health & Safety Code § 439.901(b)
Today many medical treatments currently used on women are based on studies conducted entirely on men. For example, although cardiovascular illness is the number one cause of death and disability in American women, women have consistently been excluded from major research studies in this area.
(c)CA Health & Safety Code § 439.901(c)
It is estimated that 175,000 American women will develop breast cancer, and 44,000 women will die from the disease this year. Currently, one in nine women born in the United States will develop breast cancer in her lifetime.
(d)CA Health & Safety Code § 439.901(d)
Women constitute 11 percent of all reported AIDS cases. Eighty percent of all HIV-infected women are women of color.
(e)CA Health & Safety Code § 439.901(e)
Osteoporosis, a condition characterized by excessive loss of bone tissue, affects an estimated 24 million Americans and results annually in an estimated $10 billion in direct medical costs. The cost of this disease will continue to escalate as the population ages and the incidence of osteoporosis increases. If current trends continue, the cost of osteoporosis treatment could be as much as $62 billion by the year 2020.
(f)CA Health & Safety Code § 439.901(f)
Eighty percent of individuals affected by osteoporosis are women. One-half of all women over age 45 years, and 90 percent of all women over age 75 years, suffer from osteoporosis.
(g)CA Health & Safety Code § 439.901(g)
Nearly one million couples seek medical advice or treatment for infertility. In the last 20 years, the number of infertility-related visits to doctors has nearly quadrupled. The risk of infertility is one and one-half times greater for blacks than for whites.
(h)CA Health & Safety Code § 439.901(h)
Despite these facts, women’s health issues—which are defined as diseases or conditions that are unique to women, are more prevalent or more serious in women, or for which specific risk factors or interventions differ for women—have received insufficient attention both in terms of funding and research.
(i)CA Health & Safety Code § 439.901(i)
The best way to treat women’s health problems is to prevent them from occurring, or to catch them in their earliest stages when they are most treatable. Without research into the causes and cures of diseases affecting women, these diseases cannot be effectively treated.
(j)CA Health & Safety Code § 439.901(j)
On August 24, 1990, the NIH published a revised, strengthened “NIH/ADHMA Policy Concerning Inclusion of Women in Study Populations.” That policy clearly stated that adequate numbers of women must be included in NIH-funded clinical studies, in proportion to the prevalence of the condition under study, unless an appropriate justification is provided. The revised policy also states that NIH will not fund grants that do not comply with its provisions.
(k)CA Health & Safety Code § 439.901(k)
The majority of biomedical research funded by, or based at, the University of California is fundamental research that investigates basic life processes and disease mechanisms, often at the cellular or molecular level, and that yields benefits for all segments of our population.
women's health research National Institutes of Health women underrepresentation in studies
Section § 439.902
This law required state agencies and the University of California to create policies by June 30, 1992, to ensure women and minority groups are adequately included in health research studies. These policies should be based on the NIH/ADHMA guidelines about including women in research populations.
By September 30, 1992, these agencies and the University should send the Legislature the adopted policies and the procedures to implement them.
(a)CA Health & Safety Code § 439.902(a)
On or before June 30, 1992, state agencies shall adopt, and it is the intent of the Legislature that the Regents of the University of California adopt, policies based on the publication “NIH/ADHMA Policy Concerning Inclusion of Women in Study Populations,” so that women and members of minority groups are appropriately included as subjects of health research projects carried out by state agencies or University of California researchers. The review of research proposals funded by state agencies or the University of California should include consideration of the appropriateness of the composition of research populations.
(b)CA Health & Safety Code § 439.902(b)
On or before September 30, 1992, state agencies and the University of California shall transmit to the Legislature copies of the policies adopted pursuant to this section, along with copies of the specific procedures put in place to carry out those policies.
inclusion of women minority groups in research health research projects
Section § 439.903
This law section encourages state agencies and the University of California to support research projects focusing on health issues that affect women and minorities. It aims to address areas where these groups have been historically underrepresented in research funding.
Additionally, it emphasizes the need for funding to adapt to the evolving distribution of diseases within populations, ensuring research priorities align with current health challenges.
State agencies shall, and it is the intent of the Legislature that the University of California:
(a)CA Health & Safety Code § 439.903(a)
Provide special opportunities for funding research projects devoted to diseases, disorders, or other health conditions of particular concern to women and minorities, or in health research areas in which women and minorities have been traditionally underrepresented.
(b)CA Health & Safety Code § 439.903(b)
At the same time, ensure that funding will enable researchers to adapt to changing population distribution of diseases.
research funding women's health minority health
Section § 439.904
This law requires state agencies and the University of California to report on how state funds are used for research on health issues that are unique to, more prevalent in, or more serious for women or minorities. It also applies if the risk factors or treatments are different for these groups.
By June 30, 1992, these bodies must set up procedures to collect and classify this data. Starting from June 30, 1993, they must include information on how their research addresses health issues concerning women and minorities in their regular program reports.
(a)CA Health & Safety Code § 439.904(a)
State agencies and the University of California shall report, consistent with available data, on the extent to which state funds administered by those agencies and the University of California are used to support research on diseases, disorders, or other health conditions that meet one or more of the following criteria, as determined by the state agency or the University of California:
(1)CA Health & Safety Code § 439.904(a)(1)
Are unique to women or minorities, more prevalent in women or minorities, or more serious for women or minorities.
(2)CA Health & Safety Code § 439.904(a)(2)
For which the risk factors or interventions are different for women or minorities.
(b)CA Health & Safety Code § 439.904(b)
On or before June 30, 1992, state agencies and the University of California shall adopt procedures for collecting and classifying data on the extent to which state-funded research projects address medical issues of particular concern to women and minorities. On and after June 30, 1993, information concerning the extent to which research supported by particular programs of state agencies and the University of California addresses medical issues of particular concern to women and minorities shall be incorporated into the appropriate periodic program reports required under existing law.
state-funded research women's health minority health
Section § 439.905
This law expresses the California Legislature's desire to promote research into how the drug RU-486 (mifepristone) can be used to treat a variety of medical conditions. These conditions include breast and ovarian cancer, a type of brain tumor called meningioma, endometriosis, Cushing’s syndrome, osteoporosis, diabetes, and AIDS.
It is the intent of the Legislature to encourage research on the effectiveness of RU-486 (mifepristone) in treating breast and ovarian cancer, meningioma, endometriosis, Cushing’s syndrome, osteoporosis, diabetes, and AIDS.
RU-486 mifepristone breast cancer treatment
Section § 439.906
This section explains that whenever the term “state agency” is used in this part of the law, it refers to the definition provided in Section 11000 of the Government Code.
For purposes of this part, “state agency” has the same meaning as defined in Section 11000 of the Government Code.
state agency definition Government Code Section 11000 meaning of state agency
