I suppose this isn't the correct forum for this question, but I hope that you can help me get the word out to anyone who cares about privacy.
HIV Poz Names Gathered by the State of Hawaii
When I go to the doctor, one of the forms that I sign states that the information about my case is confidential and protected by HIPAA.
They promise that they won't release any information without my written consent. I recently discovered that there is a big exception to this protection if you are HIV positive.
I discovered that my HIV lab results and my name were sent to the Hawaii State Health Department without my knowledge or consent.
Apparently, Physicians and Labs are required to do this clandestine reporting in order for the state to obtain Federal funds from the CDC.
Here are their awful guidelines: http://hawaii.gov/health/healthy-lifestyles/std-aids/pdfs/aboutus/hiv-reporting.pdf
My rights to private healthcare have been unnecessarily squandered. I do not trust providers who secretly release my records to the government, and I certainly will not continue to fund them.
According to the CDC, they do not require name based reporting on any other STD or infectious disease... Only HIV.
Why are they gathering the names of HIV positive people? While the CDC claims that it is a "public health need", I suspect that it is the worst kind of discrimination.
Obviously, the Department of Health is not protecting the list of names adequately: I easily found out that they have my name.
If you want to know if are on the list, call the Hawai'i HIV/AIDS Surveillance Program at (808) 733-9010. Or search out the "Surveillance Program" in your state. Let them know what you think of their secret data gathering.
I can concede that there may be some merit to name based reporting. However, there is no justification for circumventing the HIPAA informed consent guidelines.
If you are concerned: ask your doctors and your labs if they report. Fire them if they do. Insist that your records be kept as "John Doe".
Robert, please help me get the word out about this. I would be happy to write articles for the Body, or any other source that might publicize this issue.
HIV surveillance data are now used to track the epidemic. It is indeed a federal law. Firing your doctor or insisting your records be kept under the name John Doe won't help. See below.
Prevention? Apr 25, 2006
Doc, First I would like to thank you for your time and energy and power of example. I live in Mass. and our State Public Health officials will soon require names based reporting on cases of HIV to the federal government under threat that federal monies for patient care will go only to those states that comply. Health officials claim this will help them track and fight the spread of aids. Could you shed some light on how it would help or is something shakin' on shakedown street? What are they up too?
Response from Dr. Frascino
This has been a very long running battle, which you can read about in the archives. Personally, I still feel names-based HIV reporting is a bad idea, as it will discourage some folks from getting tested. I would prefer a code-based system that protects privacy. However, the Republican President and Republican Congress hold the purse strings and they want to know who is infected. So if states don't comply, they are cutting off funds. Nice guys, eh? I wish they were a bit more concerned about providing appropriate funds to treat HIV/AIDS patients and updating HIV/AIDS-awareness-and-prevention programs. (Abstinence-only sex ed. continues to do more harm than good.) But, names-based reporting appears to be a battle we have lost. It's a bad idea. But a bad idea whose time has come. So we'll deal with it. The midterm elections can't get here too soon!
I'll post below a few names-based reporting articles from the archives.
California Assembly Approves Bill That Would Create Names-Based HIV Reporting System
March 31, 2006
The California Assembly on Thursday voted 67-0 to approve a bill (SB 699) that would implement a confidential names-based reporting system for new HIV cases in the state, the Los Angeles Times reports (Ornstein, Los Angeles Times, 3/31). California's current HIV reporting system, which was implemented in 2002, uses alphanumeric codes that incorporate a patient's birth date, gender and elements of their last name. Under the system, laboratories and doctors report to their county's health department the codes for anyone who tests HIV-positive and the information is sent to the state, which then reports the data to the federal government. The Times in July 2005 reported that many cases are believed to be lost when doctors and laboratories send incorrect or incomplete codes or fail to keep required patient data. As a result, state health authorities have difficulty gauging the state's HIV epidemic. The measure, by state Sen. Nell Soto (D), would allow Gov. Arnold Schwarzenegger's (R) administration up to one year to create rules for the new names-based system. The bill also would create penalties for those who do not adhere to the confidentiality rules and would allow anonymous HIV testing in certain locations. The California Senate approved the bill in January (Kaiser Daily HIV/AIDS Report, 2/22). CDC does not consider code-based HIV reporting to be accurate, and federal officials have said they will withhold funds from states that use code-based reporting rather than confidential names-based reporting (Kaiser Daily HIV/AIDS Report, 3/14). HIV/AIDS advocates in California worry that the state might be at a disadvantage due to the high quality of care it offers HIV-positive people and the way in which AIDS cases are counted, affecting Ryan White Care Act HIV/AIDS funding calculations, which could lead to a $19 million loss for programs in the state's nine metropolitan areas (Kaiser Daily HIV/AIDS Report, 3/6). Support for the bill signals a "turnaround" in California, which was largely divided on whether the privacy of HIV-positive people would be compromised by a names-based system, the Times reports. The Assembly now returns the bill to the Senate for consideration of technical changes. Supporters say that if approved in the Senate, the bill could be signed into law within weeks, the Times reports. Gov. Arnold Schwarzenegger's (R) administration has voiced its support for the measure (Los Angeles Times, 3/31).
Calif. Gov. Signs Bill That Creates Names-Based HIV Reporting System April 18, 2006
California Gov. Arnold Schwarzenegger (R) on Monday signed a bill (SB 699) that implements a confidential names-based reporting system for new HIV cases in the state, the Los Angeles Times reports (Keller, Los Angeles Times, 4/18). California's current HIV reporting system, which was implemented in 2002, uses alphanumeric codes that incorporate a patient's birth date, gender and elements of their last name. The California Assembly in March approved the bill, and the Senate approved it earlier this month (Kaiser Daily HIV/AIDS Report, 4/10). The new reporting system will ensure that California does not lose about $50 million in federal funds annually for HIV/AIDS treatment. New provisions under the Ryan White CARE Act mean that states reporting new HIV cases using codes will not receive federal funds beginning Oct. 1, 2006 (Los Angeles Times, 4/18). "I am signing [SB] 699 to protect California's federal funding for vital HIV and AIDS services and to strengthen confidentiality protections of HIV and AIDS patient information," Schwarzenegger said in a letter to members of the California Senate (Schwarzenegger letter, 4/17).
"We thank the governor for helping us to protect vital funding. Not only will this legislation protect the state from losing millions in CARE Act funding, it will provide us with valid, uniform data to strengthen our planning of HIV/AIDS services," San Francisco AIDS Foundation Executive Director Mark Cloutier said in a statement, adding that the bill "also encourages individuals to learn their HIV status by ensuring the continued availability of anonymous HIV testing, and it contains strong provisions to protect the confidentiality of Californians who are HIV- positive" (SF AIDS Foundation release, 4/17). AIDS Healthcare Foundation President Michael Weinstein also praised the governor and the Legislature for "recognizing the urgency of this issue." Craig Vincent-Jones, executive director of the Los Angeles County Commission on HIV, said, "We've done the right thing for the state, for public health, and especially for people with HIV/AIDS." The bill "will save lives and money," Carla Bailey, co-chair of the Los Angeles County Commission on HIV, said, adding, "Names-based reporting will give California a better chance at getting -- and keeping -- people in care and treatment" (AHF release, 4/17).
Gay & Lesbian Doctors Warn Against Mandatory Reporting
By Marj Plumb July 1998
Aggressive management of HIV disease with the use of protease inhibitors has dramatically expanded the period of time that many people are living with HIV prior to receivng an AIDS diagnosis. This significant development has led the Centers for Disease Control and Prevention to re-examine how the HIV epidemic is tracked nationwide. The decision the CDC will make has far-ranging consequences. Currently, the CDC only requires physicians to report the names of people diagnosed with AIDS to local and state health departments. But such information is now unable to accurately capture new trends in the HIV epidemic. Virtually everyone agrees that to create a more complete picture of the epidemic, surveillance of HIV (as opposed to AIDS) is essential. But the question is, will HIV surveillance require the reporting of people's names or will a system of coded information that protects confidentiality be used?
The Gay and Lesbian Medical Association (GLMA), along with organizations such as the Lambda Legal Defense and Education Fund, the Latino Commission on AIDS in New York City, and the National Association of People With AIDS, believes that named HIV reporting would be detrimental to testing and treatment efforts. GLMA is an organization of gay and lesbian physicians, many of whom have been treating HIV and AIDS since the onset of the epidemic.
It is the direct experience of our member physicians that has led GLMA to agree with the CDC that an HIV surveillance system is necessary to confront a disease that continues to take a tremendous human, financial, and spiritual toll on our communities. First-hand knowledge by these physicians about homophobia and discrimination toward gay people, people of color, women, and those infected with HIV leads us to question whether names reporting is the proper surveillance tool and to support alternative surveillance methods, such as unique identifiers (codes that relate patient information) or computer encryption.
The CDC has made it clear that not only will HIV surveillance data be used to track the epidemic but that this information may also be used by other branches of the federal health department to determine how much money a state is given for the medical treatment of people with HIV. Linking numbers to funding will place immense pressure on public health officials and politicians, rightly intent on leveraging the maximum funding available to treat those with HIV, to ensure that all those infected are captured within the surveillance system. Such pressure could lead states to choose methods of tracking people with HIV that are more "full proof" -- such as names-based reporting -- yet are more vulnerable to security breaches. This pressure could also force states to outlaw anonymous testing and to link HIV surveillance to partner notification in an attempt to ensure that every HIV infected individual is identified and reported.
Currently, 28 states have implemented names reporting, but these states comprise only one-third of the people with AIDS in this country. How would a move to names-based reporting impact states such as California and New York where HIV has hit hardest? Surveys conducted of people of color in New York City indicate that names reporting would deter many people from getting the testing and treatment they need. This is a dangerous sign that should not be ignored.
Further, one-third of the states that require names reporting also have passed laws that eliminate anonymous HIV test sites, even though anonymous testing has repeatedly been shown to be the best method of counseling those at risk and helping those who are already infected to enter treatment. For people in these states the options are: be willing to give your name or live without knowing your HIV status. No one should have to make such a choice.
Both Texas and Maryland have experimented with non-names-based unique identifier surveillance systems. Both have seen an overall increase in the completeness and accuracy of data over the three years they have been used -- a positive sign that even the CDC can't discount.
Ultimately, any picture of the epidemic can only reflect those who choose to be tested. Certainly, we can extrapolate from any statistics that are collected. But the most compete picture will be obtained through the creation of a system that encourages people to be tested and get treatment, and that has the financial backing by the government to ensure that treatment is available to all who need it. To that end, surveillance is necessary. Names, however, are not. :
Can you believe this? Oct 25, 2005
Thank you as always for your kind words, but from my heart, I MEAN IT! You are family to me and I am so grateful to have someone like you on the side of so many affected with this dreadful disease. Family always stick together, through the bad and the good. I am here for you. How is your brother doing? I hope you take alot of pictures so you have the wonderful memories to look back on. He must be very proud of you as I am sure you are of him. I have had the colposcopy done. I am awaiting the results. Thank you for giving me the strength to go through with it. I felt your presence with me and am very grateful for it and your encouragement. I pray you feel my presence with you and your family in your painful situation and may you gather the strength from it to continue to do the outstanding things you do for yourself, your family and the little people like me. Please take care. I think of you always. Sending you all my love, hugs and kisses. Mommy of three
Hello dear friend.
As always, this mommy of three has you in her heart and on her mind. I just received an email from POZ and a deeply upsetting article came up. I have pasted it so you can read it and please tell me if you think we are all at risk of this and if there is anything you can suggest we can do to stop it. Can you believe it? And then they wonder why people do not want to get tested. Isn't there a law that can protect us? What about confidentiality laws?It is not enough that we have to cope with discrimination from people who are petrified of us when we have to disclose, but imagine what this will do to the rest of us, who want the option of not disclosing. Is it legal? I am having such a difficult time coping with my diagnosis and my sons, not to mention my positive pap test and awaiting my colposcopy results and am already starting to worry about where on this earth can we hide, so they cannot invade our privacy in fear of our very lives. Anxiously awaiting your reply but more than that, sending you lots of love, hugs and kisses as well as your brother and Dr. Steve. Love, Mommy of three
|| Health News ||
October 20, 2005
Illinois will begin names-based HIV reporting in 2006 Eric Whitaker, director of the Illinois Department of Public Health, on Tuesday announced that Illinois will begin in January tracking cases of HIV by name rather than alphanumeric code in response to mounting federal pressure to bring its HIV surveillance system in line with those operating in most other states, the AIDS Foundation of Chicago reports.
"The federal government has made the decision rather simple: Switch to name-based reporting or lose millions of dollars for essential HIV care, prevention, and housing programs," said Mark Ishaug, AFC executive director. "IDPH is facing this new challenge responsibly by bringing together stakeholders to ensure that every effort is made to protect client confidentiality and promote acceptance of HIV testing and care services."
AFC will serve on a task force convened by IDPH to review internal systems and assist the state in developing and communicating how HIV surveillance will operate in the future.
The Centers for Disease Control and Prevention is pressuring all states to adopt names-based HIV reporting, which it considers a more accurate and consistent collection method than codes-based systems. The CDC has refused to integrate data from 13 states using codes-based reporting into its national HIV projections. At least 10 of the 13 regions without names-based reporting, including the states of California, Massachusetts, and Washington and the city of Philadelphia, are in the process of switching to names-based reporting systems. (Advocate.com)
Response from Dr. Frascino
Hi Mommy of Three,
I combined your two posts into one.
Thank you for your kind words and support. They are warmly appreciated. As the song says, "People who need people. . . ." Regarding names-based HIV reporting, it is a battle that many of us have been fighting for over two decades. California is one of only seven states and the District of Columbia that use coded reporting for HIV cases. The federal government (CDC) has been pushing for names-based recording for many years. We, on the other hand, have encouraged a code-based system to protect privacy, prevent discrimination and encourage HIV testing. The code-based system used here, like those used elsewhere, has been somewhat cumbersome and expensive. Some cases are lost because laboratories and doctors' offices sometimes send incorrect or incomplete codes. Some members of the health department have complained they are having difficulty gauging and tracking the HIV epidemic, because the reporting is incomplete. Therefore, there are problems in allocating appropriate funds to the proper counties, etc. The federal government has now said they will withhold funds from states that use code-based reporting rather than "confidential" names-based reporting. California, for instance, will lose as much as $50 million annually in federal HIV/AIDS funds if it does not switch. Overall, I still believe names-based reporting is a bad idea due to ongoing HIV/AIDS stigmatization and the potential for discrimination. If this leads to decreased HIV testing, the consequences will be more, rather than fewer, new HIV infections. Unfortunately, even though names-based reporting is a bad idea, it appears it's a bad idea whose time has come. We still do have HIV discrimination laws on the books. We need to use those laws whenever discrimination occurs. We must also redouble our efforts to increase HIV/AIDS awareness and education. Ultimately proper education will decrease HIV/AIDS ignorance, apathy, myth and discrimination. Of course, HIV/AIDS education in the era of "abstinence only" sex education and puritanical policy wonks in positions of power in Washington is challenging to say the least.
Try not to worry too much about bad policy decisions. Eventually these problems will work themselves out. For now, focus your attention on getting well and enjoying those three little rascals of yours, O.K.?
Give them all a hug from Uncle Bob and save one for yourself, O.K.?