Summersgill replies to Mendelson on HIV Surveillance
PO Box 75265
Washington, DC 20013
August 15, 2001
Councilmember Phil Mendelson
One Judiciary Square
Washington, DC 20001
Dear Councilmember Mendelson:
Thank you for your interest in the HIV surveillance system being developed by the Department of Health. In your recent conversation with Dr. Frank Kameny, you asked what you could do to help with our concerns. We believe that a simple legislative action will remedy the problems that we have found.
I represented GLAA in the HIV Surveillance Implementation Advisory Group convened by the Department of Health's HIV/AIDS Administration (HAA). In my dissent from the final report, I cited the problem of the HIV surveillance program envisioned by the report requiring that all people being tested for HIV provide the last 4 digits of their Social Security Number (SSN) and their country of origin. Taken together, these two questions identify immigrants and will deter immigrants from getting tested. In addition to threats of deportation that undocumented aliens face, the federal ban on immigration by people who test positive for HIV raises additional fears among both documented and undocumented foreign nationals.
Whether or not the fears are rational, the questions in the HIV surveillance system will raise significant concerns for non-US citizens and deter many from being tested at all. An HIV surveillance system should not result in the reduction of HIV testing, especially by vulnerable populations.
Education efforts are expected to offset some of the fears raised by the HIV surveillance system. This is a positive move, but is unlikely to impact the immigrant communities. According to the recent census, DC's population 13% is foreign born, 3.5% speak little or no English, and 15.3% speak another language at home. Since the census often misses non-citizens, these numbers should be seen as conservative.
People with limited English proficiency will not likely be impacted by the modest education campaign. They are also among the least likely to have access to safer-sex information or other medical information. A program to promote health should not exacerbate this problem. At worst, it should do no harm.
In a July 20, 2001 letter dismissing our concerns, HAA's Chief of Epidemiology, Joan Wright-Andoh argues that country of origin is not part of the unique-identifier code. This is both correct and irrelevant. The question of country of origin is part of the information gathered for the surveillance system required by DCMR Chapter 2 of Title 22 published in the DC Register on January 19, 2001. Paragraph 206.3 requires that the HIV surveillance system "shall identify the patient by numeric code for HIV, city and state of residence, gender, race or ethnicity, mode of exposure, last four digits of the social security number, place/country of birth, date of birth and occupation."
Ms. Wright-Andoh further argues that the last 4 digits of the SSN are not required for immigrants. She then states that the code "9999" will be used in the code in place of the last 4 digits of the SSN when there is no SSN. This is a distinction without a difference.
The partial SSN also introduces errors. In addition to those people without an SSN, many people do not remember their numbers, and others do not accurately remember the numbers. Transcription errors also rise when introducing a string of numbers. The SSN is considered unreliable enough by the Advisory Group Report, that exact matches for SSN are not seen as important. In this case, we are better off dropping the SSN and just assigning a letter of the alphabet to distinguish between the extremely rare cases of people with nearly identical names, born on the same day, and of the same gender.
Additionally, despite our efforts to the contrary, information about transgender people will not be included in the HIV surveillance system. According the recent DOH sponsored "Transgender Needs Assessment Survey," there are several thousand Transgender residents in DC. 25% of respondents report being HIV positive with an additional 22% who don't know their status. That is an extremely high percentage. Transgender people are a distinct population, which needs targeted HIV prevention and treatment efforts. The HIV surveillance system as currently envisioned, will simply hide this population and mask the need for prevention programs and treatment focusing on this group.
We therefore request that you create legislation to remove the "country of origin" or the social security number information from the information collected by the HIV surveillance system and add transgender status to the list of required information required in paragraph 206.3 of DCMR Chapter 2 of Title 22.
Further, the DCMR should mandate the recommendation of the Advisory Group's final report that the information collected is for surveillance and not intervention. Although we have raised this point several times before, there is still no definitive statement in law or from the Administration that this information will not be used in other ways. Paragraph 206.5 leaves the door open to contact tracing and other invasive practices that raise privacy and human rights issues.
These modest changes will help create a strong and effective surveillance system to help us better design programs and target key populations for education and prevention programs.
Cc: DC Councilmembers