As a partial follow up to my last blog I wanted to share some data on HIV/AIDs reporting in the USA, just to give a perspective on how hard it is to actually get a grip on the data.

This is from the CDC HIV Infection Report 1989:

“All 50 states and the District of Columbia require health-care providers to report new cases of acquired immunodeficiency syndrome (AIDS) to their state health departments. As of July 1989, 28 (56%) states also required reporting of persons infected with human immunodeficiency virus (HIV) (Figure 1). In addition, 10 states (as of May 1989) have proposals on reporting currently before their legislatures, governors, or voting constituencies.

The 28 states that require HIV infection reporting account for 45% of the U.S. population and 24% of U.S. AIDS cases reported as of June 30, 1989. States with HIV infection reporting had a lower median cumulative incidence of AIDS (388 AIDS cases per state or 14 cases per 100,000 population) than states without reporting (1244 AIDS cases per state or 31 cases per 100,000 population). Thirteen (46%) states with HIV infection reporting had greater than 500 cumulative AIDS cases, compared with 14 (64%) states without reporting.

Reporting systems among the 28 states have been developed independently and therefore vary widely in methodology and information collected. In 21 (75%) states, reporting is the responsibility of both the physician caring for the patient and the laboratory that tested the patient’s blood for HIV antibody. In five (18%) states, reporting is the physician’s responsibility alone, and in two (7%) states, it is the laboratory’s responsibility alone. Twenty (71%) states require a positive result on a supplemental test (Western blot or immunofluorescence assay) in addition to a repeatedly reactive enzyme immunoassay (EIA) before a patient is reported; three (11%) states will accept reports on patients repeatedly reactive on EIA; five (18%) states will accept reports on patients reactive on an initial EIA. All states, however, recommend supplemental testing before patient follow-up or initiation of partner notification procedures.

Eighteen (64%) of the 28 states require HIV reporting by patient’s name (Figure 1); however, under certain circumstances, 10 of the 18 states permit anonymous testing and therefore do not receive names on some reports. Most states request basic demographic data, and more than half request HIV risk information. Twelve (43%) collect clinical information, e.g., eight (29%) ask whether the patient was symptomatic, and four (14%) collect sufficient information to allow use of the CDC HIV infection classification system (1). Reported by: State and territorial health departments. AIDS Program, Center for Infectious Diseases, CDC”

In fact it wasn’t until 1999 that large Southern States like Texas and Florida started to produce standard reports on AIDs infections.   The difficulties with this data collection were entirely political – some states were notoriously unsympathetic towards patients with HIV and AIDs and were reluctant to devote resources.    There were still 20 states who weren’t reporting HIV at all, just AIDS.

I knew that there had been lots of delays and inconsistencies in reporting, however I had assumed that from the turn of the century things had got a lot better.

This is from a discussion I had via email about HIV/AIDs data last week:

“we don’t have data that goes back that far and I’m not sure you could find it all in one place.  Reporting rules, laws, funding, etc… has changed so much since then and has not been standardized across states for very long in the scheme of things.  Each state and their big cities will have data going back that far but it may not be standardized from year to year or state to state or collected in the same way from year to year or across states.  You could contact each city health department (NYC and SF are separately funded cities so will have their own surveillance programs) and ask how to file a data request for the information.  You could also reach out to the CDC (HIV Surveillance Branch) and see if this is available through them.”

Looks like progress in developing Public Health data is still incredibly slow.

One of the things that we take for granted in the UK is the existence of accurate centralised Public Health data.   This helps inform policy, and allocate resources effectively.  In fact without accurate data it is hard to create meaningful policy interventions and ensure that resources are being spent to best effect.

Worth reflecting on this the next time someone tries to start a debate about whether Government or the free market is the best way to allocate healthcare resources.