PROPOSED CHANGES TO ARTICLE 27-F, THE AIDS CONFIDENTIALITY LAW:
CONSIDERATIONS IN THE DEBATE
New York City Commissioner of Health and Mental Hygiene, Dr. Thomas Frieden, recently proposed that Article 27-F of the Public Health Law be amended.† Although draft legislation has not been publicly released, it is clear from the Commissionerís own documents that he proposes to:
- Eliminate the current right of patients to written informed consent when taking an HIV test.
- Eliminate all currently required pre-test counseling when giving an HIV test.
- Allow public health officers to receive patient medical information, and to use that information to contact patients and their doctors to discuss treatment.
According to Dr. Frieden, these proposed changes are based on the following public health goals:
- Increase the likelihood that patients have an HIV test.
- Use that knowledge to prevent the spread of HIV infection.
- Use that knowledge to improve the health of persons that are HIV-infected.
- Improve patient treatment outcomes/compliance.
NYAC fully supports Dr. Friedenís goals of increasing HIV testing and diagnosis, and improving linkage to care. These goals are not only beneficial to public health, but are also critical to combating the spread of AIDS in our communities.
However, it is the mechanisms for achieving these goals, and the lack of factual information supporting the proposed amendments to Article 27-F, that is of concern.† Consider the following:
Strategy 1: Eliminate HIV Counseling and Written Informed Consent
- Dr. Frieden contends that written informed consent is a barrier to HIV testing. Anecdotal evidence and experience from NYAC members suggests that reluctance of health care providers to offer the test, rather than the current counseling and consent requirements, is the true barrier to testing.
- Is the system as onerous as described?† The NYS Department of Health recently amended the HIV counseling and testing guidelines in July of 2005, streamlining the process and clarifying that no verbal counseling is required.† Since this system was just implemented, how can we conclude that it isnít working?
- With stigma and discrimination still a problem and HIV infection so prevalent in African-American and Latino communities, are the protections previously afforded to others now expendable?†
- There is little doubt that many people learn of their HIV status later than would be ideal from a clinical perspective.† What isnít clear is who these people are, the extent to which they have interacted with the health care system, and whether they have ever been previously offered an HIV test.† The existence of an anonymous HIV testing system further complicates this question.† Before we accept that the counseling and testing process is the problem, we should be sure that the health care system isnít the problem.
Strategy 2: Public Health Officials as Clinical Case Managers
- Is there a compelling reason to duplicate the existing case management system?† New York State has for many years funded an extensive clinical case management system (known as COBRA Case Management) that does precisely what Dr. Frieden is proposing: interfacing with patients and their clinical care providers to ensure access to appropriate care, treatment, and supportive services.† How would a system administered by public health officials improve on whatís currently offered?
- How will patients and clinicians react to being contacted by a public health officer concerning a patientís care, and what is the next step in this process?† As proposed, the process has the appearance of a benevolent system intent on helping patients get quality health care.† If previous New York City administrations had suggested that they be given access to clinical information and the power to contact patients and physicians concerning clinical outcomes, what would the reaction be?† How this information could be used to sanction patients or clinical providers who donít comply with the wishes of public health officials is a serious question that must be explored.
- What kind of response will marginalized communities have to the knowledge that public health officials can contact them concerning their clinical care?† Will they avoid treatment out of fear of being identified by the government?† Will they fear the loss of benefits if they donít comply with the governmentís wishes? What impact would these changes have on immigrants and other vulnerable groups facing multiple challenges, who are often uninsured or underinsured, and are already mistrusting and fearful of government intervention? Why discard a community-based strategy that absolutely avoids this problem for one that may not?
Achieving the Goals: Alternative Considerations
As stated above, NYAC supports Commissioner Friedenís goals of:
- Increasing HIV testing.
- Using that knowledge to prevent the spread of HIV infection.
- Increasing access to HIV/AIDS clinical care and improving treatment outcomes.
In order to achieve these goals, NYAC would suggest that a thorough review of the questions outlined above be conducted.† NYAC also believes that once a proposed bill is available, further analysis will be required, and other concerns may be raised.
In the meantime, the following considerations should help to shape discourse and decision making moving forward:
∑†††††††† Consider the health care delivery system as a whole when deciding how to increase consent to an HIV test.† Health care institutions and clinical providers play a big part in the acceptance of HIV counseling and testing, so strategies to increase the likelihood that an HIV test being offered and accepted should include incentives or mandates targeting these stakeholders.
- Health care decision making is a very personal issue.† If consideration is given to injecting government into this process, a patient-driven system (opt-in) system should equally be considered.
- Improving clinical outcomes canít happen without viable treatment options.† Whatever may be done to improve linkages to clinical care, its benefits wonít be realized without a corollary investment in the HIV/AIDS clinical care system.† This concern is elevated by the pending re-authorization of the Ryan White CARE Act, which seems certain to reduce New Yorkís funding.
- Preventing HIV infection doesnít happen simply because someone knows theyíre infected.† Serious proposals to reduce the spread of HIV infection must include new funding to do the personal and community HIV education and outreach needed to ensure that those identified make intelligent use of the information.
- Since the early 1980ís, the first response to combating the spread of AIDS was community-led. As we explore new ways to improve HIV testing and bring hard-to-reach populations back into care, we must fully consider the unique and critical role of community-based organizations in this process.
NYAC will continue to represent its members on this issue as the debate evolves.
Further, we remain committed to creating opportunities for real collaboration with others,
as we strive to improve HIV testing, diagnosis and linkage to care for all...
As you can see this is a VERY scary proposal...in an already stigmatized and discriminated population-government control is the LAST†thing that is needed...eliminating many rights to privacy and confidentiality...many would feel the government can dictate almost any aspect of the course of treatment, disclosure issues and so forth-or they may lose benefits....much like the welfare system...is it now a choice between confidentiality and services, or submission to government control and status disclosure?? or, will many just refuse to be tested if this policy is enacted??
love, blessings & concern, A'isha
Yes I do agree... those are scary suggested changes... but I can't help but wonder... would they not go against Federal HIPPA laws?
I hope that the people of NY will fight to keep their rights... That would be a terrible ball to get rolling!
I will have to go back and re-read through and see what time frame there is and what we can do to help... whether it's a petition, phonecalls, letters, ect...
Love & Light
salaam Barb-yep-goes against the HIPPA laws!† Most definetly-i feel behind it all is a method to control those who are HIV positive, much as welfare is set up to control..also a way to tell others-partners, family, friends who mat be perceived to be at risk-of status...notification without consent..if passed, this will be a deadly mess...
thanks for your help hun...im looking into it as well...
That is what i thought... I will find the specific HIPPA laws and match them with the issue... from there, I contact you about doing an Activist Action Alert... maybe where people can call his office and express their serious concern over his desire to violate the people of New†York's Rights to Privacy!
Wonderful!† and ill let you know what I find...funny the announcement didnt come with petitions, numbers, etc...anyhow hun, if you do-pin it to group thread!!
Thats ok... we can use what you posted to create a petition...
I got the Email, fax, and phone number for NYC Mayor ....
I still need The Health Commissioners info... so if anyone can find it, that would help too!
But until then we can start on the Mayor!
I am so sorry to have been gone so long. But not being in the center of medical care any longer I find it very difficult to understand what all this means. Then I thought many others may be having the same brain freezes I am experiencing! So would you please put this a tad more simply so that myself and others like me can understand in simple terms what is happening so we can contribute to this? Greatly appreciate it! Growing old is a bitch. Dying young is devestation.
Love & Blessings!
My beautiful sista!!† So wonderful to see you!!† I know life is so busy...Ive been gone from group for awhile as you know moving..but so many new developments!!
The article which is posted basically proposes to take away many rights of HIV positive people, closer monitoring, doing away with informed consents, and monitoring of those who do take the test more closely-BY THE GOVERNMENT, as well as the right to test whomever, whenever...i feel it passed, it will work much as the welfare system..comply or be cut off-this would incude disclosure to others without consent...if passed, this would be ar real tradgety, with horrific outcomes, and as Barb stated -goes against HIPPWA laws (sp)...NYS...who would have thought???† Known as one of the more protective states concerning confidentiality and rights-they must be getting hardcore pressure from somewhere...
I tried to copy the proposal seperate from the thread and pin it-so we could use it as petition with numbers and contacts, but it keeps saying† "post trimmed†exceeds 6000 charecters" ...your our computer expert!!† Any suggestions hun??
lol... Ok Do you want me to use the whole post that you first posted to create the petition? Is there anything specific you want me to include or exclude? Tell me, and I will produce the petition, and we won't just put it on CARE2... there are many petition sites we can add it to!
If so, then I can do that, and maybe you could write a form letter, for a letter writing campaigne, that people could email or fax... It would be better for them to fax, because the Mayors email only allows 300 words. Fax... you can write as much as you choose!
Also one of you could write out some ideas for what people could say.... if they choose to call the mayor's office... which is always a good idea, to bombard them with phone calls, letting them know, this is unacceptable!
Just let me know how you want to work this sis and we'll get the ball rolling!
Love, Hope & Light
Thanks Barb!† hun, do what ever you feel is appropriate with the petition!† As far as the letter goes, I wil begin that-probably end of this week (daughter & her husband are coming in from Florida tonite!!!), and the idea of putting it on other petition sites...BRAVO!!!!† what a great idea!†
As far as emailing versus faxing, do you think emailing would be more effective-as people wouldnt have to go somewhere to fax if they didnt have fax machine??†
this project is great Barb...inspiring, and much needed..BIG HUGS!!!