In May, in Austin and in June, in San Antonio, in conjunction with the Texas Department of Health, I addressed conferences on Routine Screening for HIV.  The lecture in San Antonio included the “ethics of HIV Screening.”  This is a summary of some of the materials reviewed in those meetings.

The Poor More Often Affected by Infectious Diseases

Unfortunately, there is a link between ethics and economics.  In the past, The World Health Organization (WHO) has addressed the so-called 10:90 divide, whereby less than 10% of medical research is devoted to diseases that account for more than 90% of the global burden of disease.  Driving this agenda is a concern for the most disadvantaged populations, which are disproportionately affected by infectious diseases. In a paper published in Bioethics the Australian Cenre for Value, Ethics and Law in Medicine summarized the relationship between infectious disease and survival.  The report concluded:

• “...infectious disease warrants more attention from bioethicists.
• “The 'Black Death' eliminated one third of the European population during the 14th Century;
• “The 1989 flu killed between 1 million to 4 million people; and,
• “In the 20th Century smallpox killed perhaps three times more people than all the wars of that period...
• “AIDS,  multi-drug resistant tuberculosis, and  emerging infectious diseases such as SARS) continue to have dramatic consequences. “

Who would believe that 20-100 million people died in 1989 of the flu?  Our work is not yet done.  These conditions are a concern to everyone, but often we are unaware of the extent of the  threat of infectious diseases.  The Australian report continued:

• “A second reason why the topic of infectious disease deserves further attention is that it raises difficult ethical questions of its own.
• “While infected individuals can threaten the health of other individuals and society as a whole, for example, public health care measures such as surveillance, isolation, and quarantine can require the infringement of widely accepted basic human rights and liberties.” 

Therefore, bioethics must balance the utilitarian aim of promoting public health, on the one hand, and libertarian aims of protecting privacy and freedom of movement, on the other.  And, this balance must be achieved in the context of diseases that are to varying degrees contagious, deadly, or otherwise dangerous.

Tragically, the burden of infectious diseases is most heavily shouldered by the poor (in developing countries); therefore, infectious diseases also involve issues of justice--which should be a central concern of ethics.  “Practice and policy must recognize that a patient with a communicable infectious disease is not only a victim of that disease, but also a potential vector - someone who may transmit an illness that will sicken or kill others.”  Bioethics has failed to see that the patient is both victim and vector at one and the same time. (The Patient as Victim and Vector Ethics and Infectious Disease)

Controlling the Spread of HIV Infection

Since the emergence of  HIV in the late 1970s, a major public health focus has been the identification of individuals who are positive for HIV in order to control its spread.  What has not been so obvious is that there is an ethical and moral imperative for the screening and diagnosis of HIV.  As with any disease, prevention is the best strategy for the control of HIV infection.  Also, as a support for screening, the good news is that with proper treatment HIV-positive individuals are living normal lives.   The stereotype that only homosexuals and drug users can “get” HIV and that they all die quickly is not true.

There are many reasons why individuals are not screened for HIV.  In one study 27% of the respondents reported that the reason they were never tests is that their doctor never recommended testing.  69% did not get tested because they don’t think they are at risk.: Yet, Public Health initiatives will not succeed without the participation of all members of the public.  And, there is an ethical imperative for everyone to be screened for HIV. 

Regardless of age, everyone should be screened for HIV and after age 13 all children should be screened.  This is not only important for your children’s health in the off chance they could have contracted the infection, but it is also important, because in being tested and in having your children tested, you contribute to an important pubic health need.

The Center for Disease Control states:

• HIV screening is recommended for patients in all healthcare settings
• Persons at high risk for HIV infection should be screened for HIV at least annually.
• Separate written consent for HIV testing should not be required.
• Repeat screening of persons not likely to be at high risk for HIV should be performed on the basis of clinical judgment. 
• No one has the right to act unethically and everyone is obligated to conduct their health in a way that contributes to the good of the community. 
• By being tested and by allowing your children to be tested, you advance the good of all. 
• Even when you are negative for HIV, your participation in screening adds to the public health.

54% of new cases of HIV each year are the result of the 18% of HIV positive individuals who do not know they are HIV positive.

Barriers to Routine HIV Screening  still exist at patient, provider, and systems levels.

From a patient perspective the major barrier to HIV Screening is a lack of awareness of the benefits of universal screening.  From a healthcare provider perspective the barriers are:

• Concerns about lack of time to offer the test and  counseling
• Concerns about ability to facilitate linkage to care due to educational gaps due to lack of communication skills to offer the test or deliver a positive test result and
• Insufficient knowledge about the HIV prevalence in patient population

From a healthcare systems perspective barriers to HIV Screening are:

• Absence of champions to build support for routine testing at institutional levels
• Provider and administrator education to understand importance and value of HIV screening
• Imaged legal constraints --  documentation, testing regulations, laboratory process
• Fractured healthcare system impedes efficient linkage to care
• Financial constraints

If your healthcare provider does not offer you HIV screening, ask for it.  In the majority of cases, insurance pays for the tests.  Where insurance does not pay, the cost, which is small can be your contribution to your community’s health. 

It is critical to remember that in matters of health it is what you don’t know which can hurt you.  If you are HIV positive, with proper treatment you can live a normal life.  If you are HIV positive and don’t know it, you are a risk to others, to yourself and to your loved ones.  Get tested; let’s make Texas the first state where everyone is screened.