Simmons: Political agenda blocks HIV name reporting (The Washington Blade) 10/26/01
GLAA testifies for HIV Unique Identifier System Amendment ActGay and Lesbian Activists Alliance of Washington, DC
P. O. Box 75265
Washington, D.C. 20013
Testimony on Bill 14-0326
“HIV Unique Identifier System Amendment Act of 2001”
Roundtable, Committee on Health and Human Services
December 2, 2002
Chairman Allen, Members of the Committee, and Fellow Citizens:
My name is Bob Summersgill. I am President of the Gay & Lesbian Activists Alliance of Washington (GLAA), the nation's oldest continuously active gay and lesbian rights organization.
We have been working with the Mayor, Council, Department of Health and other community organizations for more than 4 years to develop and implement the best possible HIV epidemiological surveillance system that we can devise.
Ideally, a surveillance system will be accurate, confidential and minimize distrust from the public. Bill 14-0326, "HIV Unique Identifier System Amendment Act of 2001," was introduced by Councilmembers Phil Mendelson, Sharon Ambrose, David Catania, Kevin Chavous, Jack Evans, and Jim Graham and co-sponsored by Adrian Fenty to correct the problems with the unique identifier system. The current requirement of a partial social security number is problematic for a variety of reasons, including discouraging people from getting tested for HIV. Epidemiological surveys must do no harm. The bill will keep that harm from occurring.
The Centers for Disease Control and Prevention (CDC) has pressured all states and DC to begin tracking HIV infections in addition to full-blown AIDS. The CDC suggested two systems as being acceptable for HIV tracking. Names reporting, as we do with AIDS and many other diseases and a unique identifier system. The Institute of Medicine issued a report in 2001 strongly supporting unique identifiers over names reporting to protect privacy and not discourage testing. Both systems are only as accurate as the number of people who get tested. The CDC estimates that 25% of all people with HIV have not been tested and do not know their status. A study by Kaiser Permanente found 40-42% of people who test positive for HIV wait until they get sick, and miss years of life-extending treatment. Therefore, any system must encourage people to get tested, or at least not discourage them from doing so.
In 1999, The DC Council, at GLAA's urging, recommended to the Mayor that a unique identifier system be established to protect the confidentiality of people who test positive and to maintain public trust in the health care system. Unlike most other diseases, HIV disease carries great stigma, and extra protections for privacy are warranted. Mr. Ronald Lewis, the part-time Director of the HIV/AIDS Administration (HAA), led the fight to oppose unique identifiers, supporting names reporting instead. Mayor Williams wisely chose unique identifiers, but left Mr. Lewis in charge of implementation.
After an 18-month delay, HAA convened a working group to help design the unique identifier system. GLAA was invited as the only community representative which did not receive funding from HAA. A few doctors and academics, who did not represent patient groups or receive funding, also participated. The original unique identifier plan was crafted without HAA input. However, HAA staff insisted, over objections from the working group, that the proposed identifier be modified to include the last four digits of the patient's social security number.
Use of the partial SSN defeats the stated purpose of pursuing the policy in the first place, namely gathering of reliable information. Arguments to HAA noting the inherent problem of including the partial social security in terms of immigrants without a number, people mis-reporting the number, and general mistrust of the government collecting the information were ignored.
Information provided by HAA to the working group from the CDC explained that the failures of the unique identifier systems in Maryland and Texas were directly related to the inclusion of a partial social security number which were only 50% complete. In two evaluations of unique identifier systems conducted by the CDC in Los Angeles and New Jersey, found the social security numbers to be available in less than 20% of all cases reported. The CDC requires 85% reporting completeness for the system to meet minimum performance standards. First names, which HAA staff prohibited from being included, are 97.2 - 99.9% complete. Use of the first, or the first two letters of a person's first name-as is done with last name-would distinguish between two people born on the same day with similar last names.
Failure to implement an HIV tracking system that meets minimum standards will result in the loss of federal funds and in wasteful expenditures based on mistaken notions about which populations are currently in greatest need of resources. If the system HAA has foolishly imposed does in fact fail, Mr. Lewis will be quick to claim that he was right all along and that we need to convert to a name reporting system. It appears that this was Mr. Lewis' plan all along.
The current HIV unique identifier surveillance system will raise safety and security concerns for anyone mistrustful of the government. This mistrust will be particularly acute among recent immigrants, especially undocumented immigrants who risk deportation even without being infected with HIV.
By asking for a partial Social Security Number (SSN) and country of origin, immigrants will be easily identified. Considering that the United States bans immigration by anyone with HIV and the post-9/11 environment, no non-citizen will feel comfortable with these questions and will be deterred from getting tested. Testing is recognized as crucial to changing behavior, protecting yourself and your partners and treatment. Citizenship and legal or illegal status must not be barriers to health care. HIV is unconcerned with these issues and will spread between people regardless of their residency status.
Washington, DC's immigrant community is large and extremely diverse. No educational system is likely to counteract the damage done by the questions in the surveillance system itself. An educational component is likely to miss those who are least literate and least proficient in English. The only way for the HIV surveillance system to not discourage testing is by removing the SSN altogether.
While HAA reassures us that no AIDS surveillance information has ever been improperly disclosed, the InTowner has published photographs of medical records from a former DC health clinic blowing around the street. With the closing of DC General and the bankruptcy problems surrounding Greater Southeast Hospital, there is an even greater concern about the proper care and confidentiality of those records. Again, the best way to insure confidentiality is to remove the more easily recognized data.
We urge you to pass this bill.
Thank you, I am available for any questions that you may have.
[Craig Howell adds these observations from the hearing: The hearing started about 20 minutes late, around 2:20 p.m.. Phil Mendelson and Jim Graham were there; Phil stayed throughout, while Jim left after the Q&A with Ron Lewis was completed. Committee Chair Sandy Allen started by saying she had another hearing scheduled to start at 4, so all witnesses would have to be strictly limited to 3 minutes. She promptly allowed Ron Lewis to take all the time he needed to present his testimony in opposition to the bill. The Q&A session with Lewis lasted until about 3:20, leaving the seven public witnesses with relatively little time before 4 p.m. The 3-minute time limit was strictly enforced against the public witnesses, although the Q&A sessions alleviated the impact of such a limited time. The session ended at 4:10.
[Lewis justified the use of the last 4 digits of the patient's Social Security Number (SSN) as necessary to prevent duplication of Unique Identifier (UI) codes. MD and MA, he said, both of which use UI codes, had advised this step. Phil strongly made the point that those states have much larger populations than DC, so the risk of duplication of codes is much less here than there.
[The most trenchant fact to emerge from the hearing is that less than 10 people who have tested positive for HIV have had to use the "9999" placeholder that is assigned to patients who have no SSN; such SSN-less people are chiefly immigrants, and most of those illegally here. That incredibly low number strongly supports our concern that asking for SSNs deters immigrants from being tested in the first place. Health Department officials and some of their contractors posing as public witnesses tried to wish this inconvenient fact away. Candace Kattar of Identity Inc., a lawyer with an extensive immigrant practice who was one of the public witnesses, said most illegals invent an SSN for themselves so they can put down something when they apply for employment, and then start using a valid SSN once they're legalized, so it's not surprising so few 9999s have had to be assigned. She is a Department contractor. A Department official says that the new system has only been in place at some testing facilities for a few months, even though Lewis started out saying the UI coding system has been in place for pretty much the entire year. 3% of all positives tested in the last year are Hispanics, and 1% are of Asian origin.
[The status of the 19-member community advisory board the Health Department set up to recommend how to implement the UI system provoked considerable heat. The Department and some of the public witnesses on the panel claimed the group met 15 times or so between late 1999 and spring 2001, when it disbanded. Bob said the group had met only 3 or 4 times. It seems likely to me that Bob was deliberately not invited to most of the group's meetings. He also said the initial subcommittee that recommended what the UI code should incorporate had left out any SSNs, but were soon told by the Department that partial SSNs would have to be included. The Health Department official in charge of that group denied Bob's allegation, and Bob called her a liar. Sandy sternly said that no such language would ever be tolerated in her hearing room. Any Council committee that automatically excludes evidence of lying by DC government officials is obviously not taking its oversight responsibilities seriously.
[Ron Lewis said 40 states use names reporting, and that CDC has yet to approve any UI system in place in the remaining states. Even most of the states using UI code ask for and incorporate SSNs into the code, he said, and it does not seem to deter testing either in the District or anywhere else. Of course the Health Departments don't get to ask the people who don't show up to get tested, so there's a reporting bias in that claim. Hawaii is the only state that does not ask for SSNs; IL collects such numbers but does not incorporate them in its UI codes. If CDC does not approve our UI system by 2004, we stand to lose $64 million in federal health funds. Bob pointed out that a CDC reports shows that incorporating partial SSNs in TX and MD was directly responsible for the failure of those states to meet CDC's standards, because so many people used incorrect SSNs or left them out entirely, resulting in an incomplete UI code. The bill does not bar our Health Department from collecting SSN information, but does bar using partial SSNs in the UI code.
[Phil asked Ron about the sections of the bill barring contact tracing and counseling of positive patients without their prior written consent. Ron says that would be redundant, since the Department has never intended to take such steps anyway. Somebody else said in passing that federal regulations already bar such steps, which I believe is totally false. Bob did not have the opportunity to point out that the initial proposed regs from our Health Department in November 200, published in the DC Register, explicitly stated that the Department intended to take both steps with the information they collect from tested patients.
[Jim Graham noted that Congress has become more conservative and the national trend is towards names reporting, so any legislation from DC going in the opposite direction may prove problematic. He said he's been fighting this issue for a decade or more, and remains committed against names reporting. Jim was also the one to raise the issue of contact tracing.
[Wayne Turner of ACT UP followed Bob in support of the bill. Catalina Sol of La Clinica Del Pueblo echoed Bob's concerns about the deterrent impact of asking immigrants for SSNs. Ron Simmons did his thing, predictably playing race and class cards and denouncing GLAA for being political (shades of Peter Rosenstein). He still supports names reporting in fear we'll lose those federal funds otherwise; I suspect he mirrors Ron Lewis' sentiments, though Ron publicly says otherwise. Former HIV Community Coalition director Sundiata Alayé, now Managing Director of the Internal Audit Division of the American Red Cross, was there, predictably denouncing GLAA and opposing the bill.]