HIV Advocates, Medical and Legal Organizations Oppose Proposed Elimination of Notice and Consent Prior to HIV Testing (2019)

Screenshot of letter with logos from NYCLU, CHLP Bronx Defenders, SMART, NDS Harlem, African Services, HEAT

An ad hoc coalition of New York medical, legal and grassroots HIV organizations and individuals alerted Assembly Health Committee Chair Richard Gottfried and others about serious problems with a proposal to eliminate effective notice and consent prior to HIV testing of individuals.

The proposal has been pushed by several members of the NY Ending The Epidemic coalition, in response to the apparent failure of some health care providers to comply with the law requiring that HIV testing be offered to everyone between the ages of 13 and 62 years old. Violations of the law continue in some health care settings despite changes less than three years ago that eliminated virtually all of the paperwork and written consent requirements in earlier versions of the law.

Doctors in compliance with the law confirm that patients can now be offered testing, reassured about the process, and given the option to refuse or to test anonymously in less than 2 minutes. Regardless, several administrators of large medical and testing facilities are pushing to eliminate even this interaction with patients, so that notice in an emergency room could be limited to a wall sign saying that if you don’t object, you will be tested for HIV.

A letter sent to Assemblymember Gottfried and others sets out the concerns about the proposed change, including:

  • Lack of evidence that the benefits of eliminating notice of HIV testing will outweigh the risks and encourage people to get into care
  • Patients will not be able to opt for anonymous testing, which the law currently guarantees them
  • The proposal violates NY’s Patient Bill of Rights and state and federal disability antidiscrimination law, since those who are blind, developmentally disabled, unable to read or otherwise unable to understand that HIV testing is being done are effectively denied notice to which they are entitled under the law
  • Nonconsensual testing is likely to further alienate the communities that the proposal aims to engage, and discourage trust of health care providers.

“A proposal of this nature should not be enacted without full consideration of the potential downsides or without data supporting the conclusion that the best way to deal with health providers' failure to follow current law is to further dilute their obligation to engage with their patients,” the letter to Assemblymember Gottfried stated.

In addition to The Center for HIV Law and Policy, endorsers include the New York Civil Liberties Union, The Bronx Defenders, SMART, Immigration Equality, Neighborhood Defender Service of Harlem, African Services Committee, and HEAT: Health and Education Alternatives for Teens, as well as William Dobbs, Esq., Cynthia B. Knox, Esq., and Neal Rzepkowski, MD.

Click link below for pdf of full letter.

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