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HIV Law Debate Continues
NYC Health commish Clarifies Draft Bill
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By KERRY ELEVELD
Monday, April 10, 2006
http://www.newyorkblade.com
The fourth of six scheduled community forums was held last week to debate City Health Commissioner Dr. Thomas Frieden's proposed changes to the state's HIV testing and confidentiality laws. As HIV/AIDS activists on the ground and legislators in Albany voice serious concerns, Dr. Frieden is modifying and clarifying the language of the draft legislation that is currently circulating.
He began the Chelsea forum the same way he began those in the Bronx and Harlem, with statistics that everyone agrees should sound an alarm. "Today in New York City, 12 people will be diagnosed with AIDS; 10 of them are African-American; four of them will be women, and three- likely all of them African-American or Latino- will not have known of their HIV infections until they are sick with AIDS," Dr. Frieden said.
After highlighting the need for urgency, Dr. Frieden broke from his usual script and voiced several insights he has gleaned from previous presentations. "I want to share some examples of things that we think have been very helpful and we think need to be reflected," he said of the proposed language for the legislation.
One of the draft's suggested changes would eliminate the requirement that providers obtain written consent before performing an HIV test. Dr. Frieden explained that he supports requiring documented oral consent, though parts of the proposed legislation suggested that providers would simply "advise" patients that a test was being performed.
"Although our language spoke of documented oral consent, there was a phrase that said that informed consent would consist of 'advising' someone that they were being tested...that is not informed consent, that is not what we intended to propose," said Dr. Frieden. "We do think that needs to be clarified within the law so that it is explicit."
Dr. Frieden's second point involved how the NYC Department of Health (DOH) would help link HIV/AIDS patients to care. While state law currently allows the department to track down HIV positive people in order to notify their partners of that person's status, it does not allow the city to step in and help people who have dropped out of care. "Any attempt to reach out to someone should be done first by the medical provider or case manager providing care to that person," said Dr. Frieden, adding that he never intended outreach to be done by a governmental organization or any other entity unless that person had been "lost" in care.
His third clarification involved the draft's provision for the DOH to seek from providers what's termed "additional information" about a patient. Critics have said the language would lay bear a patient's entire case history. But Dr. Frieden said he only wanted access to three pieces of information: whether or not they are a patient or client of a provider; whether or not they are in care; and if and only if they are not in care, how they might be located.
As with previous forums, last week's meeting included a healthy number of activists who advocated strongly for keeping pre-test counseling and written consent and not opening patient files to the Health Department. But several panelists voiced support for some of the changes, citing past proposals that initially met with criticism but eventually saved lives.
Dennis deLeon, president and executive director of the Latino Commission on AIDS (LCOA), said that he had staunchly opposed expedited testing of pregnant women and newborns back in the late '90s. But after the measure was implemented, he remembered one pregnant woman who tested positive and immediately turned her concern to the well-being of her child. "I fought against her knowing that," said deLeon of her HIV status. "I feel ashamed because to me it was more about the victimization than the public health aspect."
Albany
Legislators in Albany are also taking a hard look at the proposed changes. Assemblymember Richard Gottfried, who chairs the Assembly Health Committee, said he expects the bill will be formally introduced fairly soon but added that he has too many reservations about the legislation to sponsor the bill himself. "Given the widespread criticism and opposition, I would be surprised if the bill advanced in this year's legislation," he added.
Gottfried, who was the original drafter of the confidentiality clause Article 27F, said Dr. Frieden contacted him about sponsoring the bill and he declined. "We discussed who might be an appropriate sponsor and [Assemblyman] Darryl Towns was one of the people I suggested, partly because he's a member of the Health Committee and partly because he's a bright and thoughtful legislator," he said.
Gottfried opposes repealing the requirement for written consent, especially since the Health Department adopted the streamlined one-page consent form just last year. "Before we think about changing the law, I would want to see some hard proof that the law is an obstacle to testing, and I haven't seen that," he said. "I think the main obstacle to testing is doctors who are reluctant to bring up an unpleasant topic with patients. Changing the consent law isn't going to change that."
Assemblymember Gottfried also questioned changes dealing with the Health Department gaining access to patient records and linking people to care. "I think there is a lot that the Health Department could do without statutory changes to help promote people getting into treatment," he said.
Assemblyman Darryl Towns and Sen. Tom Duane did not return calls for comment, but Assemblymember Deborah Glick voiced similar concerns to Gottfried.
Two more forums have been scheduled for 3-5 p.m., April 10, on Staten Island; and 3-5 p.m., April 11, in Jamaica, Queens.
Previous commentary regarding the proposed New Law by Charles King of Housing Works in NYC published in the New York Blade.
OPINION
3 Steps to Fighting HIV/AIDS in NYC
Plus: Why lawmakers should reject Frieden's HIV proposals
By Charles King
Monday, April 10, 2006
http://www.newyorkblade.com
On March 6, the New York Blade published an Op-Ed piece by NYC Department of Health Commissioner Thomas Frieden, titled "We Can Stop the HIV Epidemic."
We share Commissioner Frieden's concern about the two critical issues:
- Too many New Yorkers are unaware that they are HIV-positive, including more than 1,000 people who learn their HIV status each year when they are diagnosed with an AIDS-defining condition.
- People living in lower income areas of the city, primarily people of color, are receiving substandard care or are not engaged in care and, consequently, die at much higher rates than those who are engaged in quality care.
Commissioner Frieden proposes two changes to New York State law to address these issues. As a first step he would eliminate the requirement of mandatory pre-test counseling and signed consent for an HIV test, which he claims is the major barrier to routinized testing in medical settings. The second step, he says in his article and has told people with AIDS, service providers and lawmakers, is to allow the health department to contact doctors and their patients to improve care.
Housing Works obtained a copy of Frieden's proposed legislation, and it is far broader and more dangerous than advertised.
It doesn't just eliminate the protection of a signed consent form. It eliminates informed consent to be tested altogether. In Kafkaesque fashion, Frieden's bill defines "informed consent" telling that patient that an HIV test is being done.
There is no requirement that the patient consent at all, much less any requirement that the provider explain to the patient the implications of the test. Even if the patient doesn't understand what is being said, he or she is deemed to have consented so long as the patient does not explicitly say, "Don't test me."
The second component of the legislation is even more pernicious.
Frieden's proposed bill would require medical, social service and housing providers to turn over currently private medical and personal information about anyone who is HIV-positive to local health officials, whenever they demand it.
Local officials could then disclose the information to any other providers or programs that have ever served that individual "for the purposes of linking an individual to health care or otherwise improving the health of such individual." In addition, officials can demand that the State Department of Health provide them with a history of the HIV medications that the patient has obtained through Medicaid and the AIDS Drug Assistance Program.
Under the Frieden bill, all of this private information could be collected and disseminated without the consent or even the knowledge of the patient. Officials could demand patients' sexual histories, patterns of illicit drug use, mental health diagnoses or any other information that the patient might have shared with a provider in confidence. There is no meaningful limitation on how this information might be used to coerce an individual into "improving" his or her health.
Clearly this is the greatest threat ever posed in the State of New York to the privacy rights of people living with AIDS and HIV. And it's a serious threat to the effective provision of health care and social services.
One could not imagine a more intrusive - and economically wasteful - way of addressing the issues Frieden claims he wants to tackle. There are more effective and less invasive ways to encourage early testing and improvement of care.
TO UNDERSTAND THOSE alternatives, it is important to understand which New Yorkers are late getting tested for HIV, are not getting HIV care or are receiving substandard care.
The overwhelming majority of these men and women are homeless, addicted and actively using substances, or are mentally ill. Two other groups are black men who have sex with men, and undocumented immigrants, who may or may not experience one or more of the above conditions as well.
The current AIDS system in New York has utterly failed these people. But this failure won't be remedied though routine HIV testing without consent in medical settings. Nor is it going to be changed by breaching confidential relationships that are built on trust.
In fact, the best way to reach these New Yorkers is through targeted interventions that reduce the serious barriers to testing and engagement in health care they face every day.
Step One
Take universal, voluntary HIV testing to the places where these people are: homeless shelters, drop-in centers, jails, pre-arraignment detention settings and drug-treatment and mental-health programs. We need to do much more targeted outreach in underground venues for men of color who have sex with men and places where undocumented immigrants gather for work, recreation and services. And we'll need a lot more hands-on assistance helping each person who tests positive make an effective connection to health care.
Step Two
Provide new incentives to get an HIV test and remove the barriers that keep people out of care, including homelessness and lack of financial and other support.
Right now, a person with HIV cannot receive housing, nutritional support or financial entitlements until he or she is diagnosed with advanced HIV disease. Opening up access to housing, nutritional support and entitlements would not only give people living on the margins a reason to get tested, but also pull them into systems of care.
Step Three
Provide targeted peer education services to providers of care and to health care consumers in low-income neighborhoods that lack high-quality health care services.
Most doctors who serve people living with HIV and AIDS in poor communities would welcome training to improve their care, and everyone would benefit from informed consumers demanding the kind of care that they need.
Dr. Frieden is right to suggest that we can end the AIDS epidemic. But it simply won't be accomplished through intrusive command and control methods. What we most need is to provide low-threshold access to testing and treatment while providing for basic survival needs, including housing and supportive services.
The state legislature would be wise to reject Frieden's dangerous proposal and move to strengthen- not limit- the rights and resources of the poorest and most disenfranchised New Yorkers who are living with AIDS and HIV.
Charles King is president and CEO of Housing Works, which provides housing, health-care and advocacy services for homeless New Yorkers living with AIDS and HIV.
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