[Dryerase] The Alarm--HIV Surveillance threatens anonymity

[Alarm!Wires]

This was our front page story last issue and was continued in this 
issue.  Most of the interviews are from local folks, and it focuses 
primarily on California State, but it could be relavent elsewhere.

HIV surveillance threatens anonymity
By Caroline Nicola
The Alarm! Newspaper Collective
California implemented new regulations Monday to enhance the State’s 
existing system of HIV reporting.  The legislation requires health care 
clinics and laboratories to provide local health officers with 
information on persons infected with HIV, the virus that causes AIDS, 
using “non-name codes.”  HIV tests done anonymously will not be 
reported. However, in order to get access to medical services, a 
confidential test is required and the results will be reported using the 
non-name codes.
State officials claim the codes will ensure individual privacy, but some 
health care workers worry that the new reporting requirements will scare 
people away from being tested.  “One of my biggest fears is that it will 
decrease the number of people tested,” said Saji Seven, African American 
HIV Prevention Coordinator at the Equinox, an HIV prevention center in 
Santa Cruz. Seven pointed out that the HIV case reporting system could 
be intimidating for those concerned with privacy.
Roy Jimenez, Health Program Director of Salud Para La Gente in 
Watsonville, said just walking through the door of a clinic to be tested 
is a major decision for many people, and includes an understandable 
level of anxiety and fear.  People may back off from being tested due to 
the new reporting requirements, he said.
Sally Cantrell, HIV Prevention Services Coordinator of the Berkeley Free 
Clinic shares his concern.  “People at the highest risk for being HIV 
positive are the most reluctant to take a HIV test if they have to 
divulge personal information,” she said.
The non-name codes will consist of an individual’s Soundex code (a 
phonetic, alphanumeric formula which is used to convert the last name 
into an algorithm), complete date of birth, gender and the last four 
digits of the patient’s Social Security number.
The California Department of Health Services (CDHS) will use the 
reporting system to track the number of individuals in the state with 
HIV in order to provide access to prevention and treatment programs and 
to apply for federal funds, according to the State Department.
“The confidential reporting of HIV will allow more accurate 
epidemiological surveillance to better monitor the HIV/AIDS epidemic,” 
said State Health Director Diana Bonita.  “It will also provide for 
targeted planning, resource allocation and evaluation of HIV prevention 
programs.”
Prior to the new regulations, Santa Cruz County already tracked 
communicable diseases and reported their findings to CDHS and the Center 
for Disease Control, a federal agency.  The problem with that system is 
it didn’t give exact numbers, according to Cantrell.  When people with 
positive results were tested more than once, the data did not indicate 
that the multiple positives were from one person, she said.
Even though the State claims the new regulations ensure individual 
privacy, Cantrell argues the new HIV case reporting system compromises 
people’s anonymity.  “People can be clearly identified with that 
information,” she said.  Cantrell said the health care system is not 
being up front with its clients.
However, Leslie Goodfriend, Health Services Manager at the Santa Cruz 
Health Agency said the new tracking system is a very positive and 
necessary step in dealing with AIDS.  She says it would be difficult, if 
not impossible to link people to their codes.
The State has been interested in tracking HIV more effectively because 
of an increase in concern about HIV transmission, particularly among 
immigrant populations, according to  Jimenez.  He said the new reporting 
requirements will track where the disease emanates from and look at 
patterns, clusters and analyze how it affects local populations.
Jimenez is concerned that the data might be misused to blame immigrants 
for the spread of the disease.  “Many of us in the health care movement 
will monitor that very closely,” he said.  “We want the data to be used 
to identify and treat diseases when they are noted, not to make 
accusations that might target any number of populations, whether they 
are Latinos, Asians or other folks who have immigrated here.”
Currently, seven states (Hawaii, Illinois, Kentucky, Maryland, 
Massachusetts, Rhode Island and Vermont) have established HIV 
surveillance systems using codes in lieu of names.  Five states 
(Delaware, Maine, Montana, Oregon and Washington) use a hybrid reporting 
system in which names of HIV-positive individuals are initially 
reported, but later replaced with codes.
By the beginning of the fiscal year 2004, the distribution of federal 
funds to States will be based on the number of HIV cases reported 
through the HIV tracking system.
Next week will explore the Soundex code and other “Unique Identifiers” 
options used by health care agencies.
 
HIV Surveillance
Part 2: The Soundex Code
By Caroline Nicola
The Alarm! Newspaper Collective
On July 1, California joined seven other states in reporting people who 
test positive for  HIV using codes in lieu of names.  Most other states 
that track HIV use a name-based system.  This article is the second of 
two parts on the new HIV surveillance system in California.
Advocates and people living with AIDS have waged a tough battle for the 
right to be tested anonymously, a battle lost in many states.  People’s 
health can not be protected if their civil rights are compromised,  said 
Anna Forbes, an AIDS policy consultant, writer and teacher.  That 
dilemma is fundamental to concerns about the new HIV surveillance system 
in California.
Unlike other conditions, funding for AIDS has been based on a numbers 
count since its beginning.  Because State and Federal agencies want the 
funding to be based on the number of people who test positive for HIV 
rather than the number of full-blown AIDS cases, some case reporting 
system is needed.
To get an accurate epidemiological account of how many people are HIV 
positive and in what populations, an HIV case reporting system needs to 
have a low duplication rate, meaning that people testing positive for 
HIV are not listed more than once.  In order to do that,  unique 
identifiers (UI) are needed.  UI consists of a combination of public or 
private data elements used to distinguish people.
The non-name codes used in California’s HIV case reporting system 
consist of an individual’s Soundex Code (a code based on the way a 
person’s name sounds phonetically), complete date of birth, gender and 
the last four digits of their Social Security number.
In an effort to prevent duplications, people’s privacy erodes in the 
process, said cryptographer Philip Zimmermann, creator and founder of 
Pretty Good Privacy, Inc.  He said there are two pressures working in 
opposite directions: one is to create a unique identifier, the other is 
trying to make it anonymous.  “Those two are working at cross purposes.  
The more unique you make a code, the easier it is to break its 
anonymity,” he said.
Zimmermann has received numerious technical and humanitarian awards for 
his pioneering work in cryptography.  He said there may be people who 
believe the non-name system using Soundex is anonymous, but those people 
are probably not software engineers or data security professionals.  “It 
is possible to break an anonymity scheme as flimsy as one based on 
Soundex, especially if it has other information in it like date of 
birth,” he said.
All that would be needed to crack the non-name code would be a computer, 
a secondary data base that has all the necessary data elements in it and 
a copy of the algorithm used to produce the Soundex codes.
So why use the Soundex code if it can be cracked?  It is easy, cheap and 
States have been using it to report AIDS cases to the Center for Disease 
Control since the beginning of the AIDS outbreak, according to Forbes.  
She said if a State develops a different UI system, it would be harder 
to cross-match HIV data against other relevant databases such as the 
AIDS registry and the national death registry.  “It is a question 
between do you give your State a really good UI system that protects 
people’s privacy, or do you go with another system like Soundex that is 
easier and cheaper to use, but doesn’t protect privacy as well,” she 
said.  Forbes argues that any UI system is still more secure then 
name-based systems because they are harder to crack.
 
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