# Presentation: 055534

## HIV/AIDS in New York State

- Prepared for the
**Presidential Advisory Commissioner on HIV/AIDS**
**November 9, 2004**
- Guthrie S. Birkhead, M.D., M.P.H.
- Director, AIDS Institute
- New York State Department of Health

## HIV/AIDS in New York State

- HIV Reporting in New York State
- Evaluation of HIV Reporting
- Ryan White CARE Act

## Slide 3

## New York:  Epicenter of the AIDS Epidemic

- New York leads the nation in:
- Cumulative AIDS case reports: 155,755 (thru 2002), and
- Persons living with AIDS – 63,412  (2002)
- New York, with 6.6% of the U.S. population has:
-  19% of cumulatively reported AIDS cases, and
-  17% of living AIDS cases.
- New York City, with 34.8 AIDS cases per 100,000, is surpassed only by the District of Columbia.

## AIDS Deaths in New York State Residents1990 - 2002

**Source:  Bureau of Biometrics/NYSDOH**

## Number of Living AIDS Cases* New York State

**Data for 2001 & 2002 are incomplete**
**    ****Data as of Dec. 2002**

- NYSDOH/BHAE

***Alive at the end of each year**

- Male

- Female

## Reported AIDS Cases by Race/EthnicityNew York State

**Reported AIDS Cases by Race/Ethnicity****New York State**

- NYSDOH/BHAE

## AIDS Cases Exposure Category New York State

**AIDS Cases Exposure Category ****New York State**

- NYSDOH/BHAE

- *  Data are incomplete due to lag in reporting and the time required for case confirmation.
-     Data through December 2003

- Percent

## HIV/AIDS "Iceberg"

**AIDS**

**HIV**

**HIV/AIDS "Iceberg"**

** ****Number of cases**
** ****Time**

## Impact of Slowed

**AIDS**

**AIDS**

**HIV**

**HIV**

**Impact of Slowed**

**Progression to AIDS**

## AIDS Surveillance Alone Underestimates the Impact of the Epidemic

- _1998 Study_:  data from 25 states with HIV and AIDS reporting:  AIDS cases declining, but not HIV.
- Adolescents
- 3% of AIDS cases vs 14% of HIV infections
- African Americans
- 45% of AIDS cases vs 57% of HIV infections
- Heterosexual Transmission
- 12% of AIDS cases vs 18% of HIV infections

**MMWR Vol 47, No. 15  (4/24/98)**

## Uses of HIV Surveillance Data

- Estimate the burden of HIV disease in the population.
- Monitor trends in the HIV epidemic and identify populations at risk currently.
- Target HIV prevention interventions and evaluate their effectiveness.
- Allocate funds for health and social services.
- Essential for effective tracking of the epidemic

## 1998 New York State HIV Reporting/Partner Notification Law 

- Amended NYS Public Health Law Article 21:
- June 2000 -  State Regulations effective to:
- Require reporting of persons with HIV, HIV-Related Illness, and AIDS
- Require reporting of sexual and needle-sharing partner names known to the medical provider or who infected person wishes to have notified
- Require development of domestic violence screening protocol to be applied to each identified contact
- Maintain anonymous counseling and testing option.

## HIV Reporting Regulatory Provisions

- Who Must Report:
- Physicians, NPs, midwives
- Clinical Labs (including blood banks)
- What Lab Results Must be Reported:
- HIV antibody
- HIV nucleic acid detection
- CD4 lymphocyte counts less than 500
- What Information Must be Reported:
- Identifying Information, including patient name
- Known sexual/needle sharing partners

## HIV Reporting Regulatory Provisions

- _Immunity granted for civil or criminal liability_ if complying in good faith with the law.
- e.g. Disclosure by physicians of patient and partner names does not constitute libel or slander, or violation of the right to privacy.
- _Disclosure by patients of their partners is voluntary_; No criminal or civil liability arises for non-disclosure of partners by the patient.
- _Partner notification can be deferred based on a risk of domestic violence_ as determined by the physician or public health official.

## HIV Reporting and Partner Notification – Secure Data System

**State Secure**
**Network**

**HPN**

**Lab Reports**

**Capital District**

**Regional Office**

**Schenec-**

**tady**

**Syracuse**

**Regional Office**

**Fulton**

**Onondaga**

**NYC**

**Albany**

**Watertown**

**Office**

**Monroe**

**Rochester**

**Office**

**Erie**

**Chatauqua**

**Buffalo**

**Regional Office**

**Dutchess**

**Orange**

**Rockland**

**New Rochelle**

**Office**

**Westches-**

**ter**

**Nassau**

**Suffolk**

**Hauppauge**

**Office**

**PNAP Only**

**PNAP and Surveillance**

**State**
**DOH**

**Upstate **
**Provider**
**Reports**

**NYC**
**DOH**

**NYC Provider**
**Reports**

**Unduplicate**

**Match to **
**Registry**

- NYSDOH/BHAE

## Slide 17

## Slide 18

**Notes:**
   Clinicians outside New York City (NYC) mail the yellow
   carbon copy of the report (includes no labels/data identifiers)
   to a dedicated PO box in the 
   New York State (NYS) Health Department.

Clinicians in NYC contact the NYC Health Department
for pick-up of the form. 

## HIV Cases Reported to CDC Top 4 Reporting States

| State | Date Began Reporting | Cases Reported in 2001 | Cumulative Cases Reported |
| --- | --- | --- | --- |
| New York | June 2000 |   11,459 | 30,963 |
| Florida | July 1997 |     6,211 | 27,913 |
| New Jersey | Jan 1992 |     1,208 | 15,810 |
| Texas | Jan 1999 |     5,027 | 15,114 |
|     Total US |  |   35,147 | 199,759 |

- NYSDOH/BHAE

## HIV Compared to AIDS*New York State

**HIV Compared to AIDS*****New York State**

*** Cases reported and confirmed through November 2002**

**Gender**

**Age**

**Risk Group**

- HIV Cases

- AIDS Cases

**Race**

## Living HIV/AIDS Cases*by Race/Ethnicity and Gender New York State

- NYSDOH/BHAE

- *Reported and confirmed through March 2004

**Males**

**Females**

## Living HIV & AIDS Cases by AgeDiagnosed through December 2003*New York State

- NYSDOH/BHAE

**AIDS  N=65,756**
**HIV  N= 36,452**

- * Reported and confirmed through March 2004

## Living HIV and AIDS Cases New York State

**Year**

- ^ HIV named reporting began in NYS in 2000

- NYSDOH/BHAE

-  * Reported and confirmed through March 2004
- ** Date are incomplete due to lag in reporting and confirmation

**Living w/HIV**

**Living w/AIDS**

- Persons
- Living

## HIV Reporting and Partner Notification (HIV R/PN) Impact Study

-  CDC funding for 3 years (10/1/00 - 9/30/03)
-  Grant #R06/CCR218723-01** **
** **6 major study components
-  Supplements existing monitoring/evaluation activities

##  HIV R/PN Study Components

- Review usefulness of data collected
- Measure impact of HIV reporting on HIV counseling and testing rates
- Survey groups at risk to determine knowledge and attitudes towards the law.
- Focus groups with HIV positive individuals, service providers, and partner notification staff
- Survey as sample of HIV counseling and testing providers.
- Survey practicing physicians

## HIV R/PN Study Collaborating Agencies

- AIDS Community Service of Western New York
- AIDS Council of Northeastern New York
- AIDS Council of Queens County Project Reach
- AIDS Rochester, Inc.
- CDC/Div. STD/Behavioral Interventions and Research Branch
- Erie County STD Clinic MOCHA
- FACES
- Gay Men’s Health Crisis
- Harlem United Community AIDS Center
- Hispanic AIDS Forum
- Monroe County STD Clinic

## Component #1Partners Identified on HIV Report Form, New York State, 2001

**	****	****	****  **_**NYS**_**	****	**** ****	**_**NYC**_**	****	****  **_**Total  NYS**_
** **
**No Partners****	****	****  429  ( 42%)****	****	****3,294 ( 55%)****	****  ****3,723 ( 53%)**
** **
** **
**>= 1 Partner****	****	****  602  ( 58%)****	****	****2,714 ( 45%)****	****  ****3,316 ( 47%)**
**TOTAL provider**
**report forms****	****	****1,031 ****	****	****	****6,008 ****	****             7,039**
** **

**Component #1****Partners Identified on HIV Report Form, New York State, 2001**

## Outcome of HIV Testing of Partners

**Outcome data available on follow-up testing**
**for close to half of partners notified in**
**NYS outside NYC **
**	****	**** **_**New positives post Notification**_
**	****2001****	****   16.1% ****	**
**	****2002 ****	****   18.0 % **
**(Overall rate of seropositivity for CTR services in NYS**
**In Anonymous Counseling and Testing sites was 1.1%,**
**and for all CTR sites 2%.)**
*** Previous positives excluded from denominator**
**	**

## Component 2:HIV Testing Data AnalysisThe Concern:

- HIV name-based reporting will cause individuals to avoid/delay HIV testing or medical care.
- Conflicting research findings on this issue:
- Inconsistency attributed to differences in the timing of the research, differences in populations studied, and differences in research methods used
- More recent studies have found little deterrent effects.

## Research Questions

- Did levels of HIV testing and/or rates of posttest counseling change following the implementation of the NYS HIVRPN law?
- Did the percentage of HIV-positive test results converted from anonymous to confidential status change following the implementation of the NYS HIVRPN law?

## Methods

*Data Sources:*
- Publicly funded HIV counseling and testing program data from NYS
*Data Analysis:*
- Study period from January of 1998 through March of 2002
- To minimize impact of changes in counseling and testing sites over time, only sites submitting data throughout entire study period were included.

## Total HIV Tests by Month and Year

**Total HIV Tests by Month and Year**

**NYS HIV Counseling and Testing (CTS) Data**

- 0

- 200

- 400

- 600

- 800

- 1000

- 1200

- 1400

- 1600

- 1800

- 2000

- Jan-98

- Mar-98

- May-98

- Jul-98

- Sep-98

- Nov-98

- Jan-99

- Mar-99

- May-99

- Jul-99

- Sep-99

- Nov-99

- Jan-00

- Mar-00

- May-00

- Jul-00

- Sep-00

- Nov-00

- Jan-01

- Mar-01

- May-01

- Jul-01

- Sep-01

- Nov-01

- Jan-02

- Mar-02

- Number of HIV Tests

- Anonymous Test Sites

- Substance Abuse Sites

- Community Health Centers

- Criminal Justice Sites

- HIVRPN Law Implementation

## HIV Post-test Return Rates

**HIV Post-test Return Rates**

**NYS HIV Counseling and Testing (CTS) Data System**

- 60.0%

- 65.0%

- 70.0%

- 75.0%

- 80.0%

- 85.0%

- 90.0%

- 95.0%

- 100.0%

- Jan-98

- Mar-98

- May-98

- Jul-98

- Sep-98

- Nov-98

- Jan-99

- Mar-99

- May-99

- Jul-99

- Sep-99

- Nov-99

- Jan-00

- Mar-00

- May-00

- Jul-00

- Sep-00

- Nov-00

- Jan-01

- Mar-01

- May-01

- Jul-01

- Sep-01

- Nov-01

- Jan-02

- Mar-02

- % Returning for Posttest

- Anonymous Test Sites

- Substance Abuse Sites

- Community Health Centers

- Criminal Justice Sites

- HIVRPN Law Implementation

## Rates of Conversion from

- 69.9%

- 74.0%

- 0.0%

- 10.0%

- 20.0%

- 30.0%

- 40.0%

- 50.0%

- 60.0%

- 70.0%

- 80.0%

- 90.0%

- 100.0%

**% Converting**** **

- Pre-HIVRPN Law (N=196)

- Post-HIVRPN Law (N=96)

**Rates of Conversion from**
** ****Anonymous to Confidential Status **

## Prenatal HIV Testing of Pregnant Women,  NYS, 1998 - 2002

**1998**

**1999**

**2000**

**2001**

**Prenatal HIV Testing of Pregnant Women,  NYS, 1998 - 2002**

**2002**

- NYSDOH/BHAE

**Percent Prenatal HIV Testing**

- HIV Reporting
- Started

**Notes:**
In August 1999 NYSDOH implemented regulations requiring expedited testing of mother and/or infant during labor and delivery if no prenatal HIV test documentation was available upon a woman’s presentation for labor and delivery.  In recent years about 94%  of  childbearing women have been tested routinely in the prenatal period.

Methodology Note:  Data on routine prenatal  testing is obtained from information provided by birth facilities on the  NYSDOH Newborn Screening requisition form.

## Additional Datasets Analyzed

- Home Testing Data
- Home Access, the only maker of home HIV testing kits in NYS during the study period
- Medicaid Data
- Billing HIV pretests and HIV post-tests
- Results from both data sets consistent with CTS data results:  no discernable impact of HIVRPN Law on testing levels

## Component 2: Conclusions

- Results indicate no support for a deterrent effect of HIVRPN on testing behavior:
- HIV testing levels did not decrease in confidential testing settings and
- Did not increase in anonymous settings following NYS HIVRPN law.
- Rates of posttest counseling did not change subsequent to the law.
- Anonymous-to-confidential conversion rate didn’t change

## Component 3:HIV Testing Attitudes and Practices Survey (H-TAPS)

- To assess knowledge of, attitudes toward and experience with NYS’s HIV Reporting and Partner Notification Law.
- Three populations at risk for HIV infection were interviewed:
- Men who have sex with men (MSM)
- Interviewed in gay bars
- Injecting drug users (IDU)
- Interviewed in Syringe Exchange Programs
- High-risk heterosexuals (HET)
- Interviewed in Sexually Transmitted Disease Clinics

## Knowledge of Name-Based HIV Reporting in NYS*

|  | MSM
n=91 | HET
n=98 | IDU
n=98 | Total
n=287 |
| --- | --- | --- | --- | --- |
| Names reported to the state | 32% | 9% | 10% | 17% |
| Positive results reported some other way | 32% | 31% | 18% | 27% |
| Positive results are not reported | 17% | 4% | 62% | 28% |
| Don’t know if positive results are reported | 20% | 55% | 9% | 28% |

-  HIV Testing History (Never tested, tested before law, tested after law)
-    not significantly related to knowledge of name-based reporting in NYS

- * Data from Rochester site.

**Notes:**
Rochester only because question was asked incorrectly in Buffalo

## Reasons for delaying oravoiding HIV testing (67%)

| Reason | A Reason* | The Most Important Reason |
| --- | --- | --- |
| Unlikely you’re HIV+ | 45.6% | 35.0% |
| Afraid of finding out if you were HIV+ | 32.6% | 21.1% |
| Did not want to think about serious illness or death | 30.1% | 7.7% |
| Waiting for results would be too stressful | 24.5% | 7.4% |
| Didn’t have time | 22.7% | 11.9% |
| Concern about name reported to government | 4.9% | 0.3% |

- *Categories are not mutually exclusive, **Excludes those tested without delay in the past 12 months (n=185) and HIV+ (n=50).

**Notes:**
185 people who tested in the past year did not delay being tested
Numbers:
Delayed in past year: 119 
Not tested in past year: 175
Never tested: 96

## HIV Testing Survey Conclusions

- No evidence that HIVRPN law is deterring HIV testing among high-risk groups.
- Attitudes toward PN/PNAP generally good, but MSM more skeptical.
- Perception of PN-related IPV low, but general risk still high among all three groups.

## Component 5: HIV Counseling and Testing Provider Survey

- 2-Stage mailed survey being conducted
- Stage 1:  Survey of a sample of C&T Agencies;		N=202.  Response rate:  67.5%
- Stage 2:  Survey distributed to HIV C&T counselors.		N=680.  Response rate: 42.8%

## HIV C&T Agency Survey 

## Demand for Counseling and Testing Services: Past 3 Years

## Impact of HIV R/PN Law on Demand for Counseling and Testing

## Coded Identifiers and HIV Surveillance

- _HIV Reporting by Code:_
- Unique code not including name
- Code formula May include name, date of birth, gender, SSN digits.
- _Name-to-code HIV Reporting:_
- Initial report included name
- Health department generates unique code by formula
- The name is destroyed, usually within a set time period

- BHAE/NYSDOH

## Current Status of Implementation ofHIV Infection Surveillance

- Washington, D.C.

- BHAE/NYSDOH

**Notes:**
Five states currently use the name to code system for HIV Surveillance.  Only Montana uses a name-to-code system for both HIV and AIDS Surveillance.

## Challenges in the Use of Coded Identifiers

- _Lack of Reporting Code formation:__  _Busy physicians won’t report, and labs generally lack data, especially referral labs.
- _Is code unique__?_
- 	Will the code be unique?
- _De-duplication__:  _
- 	Will the code identify previously reported cases or cares reported to other states?
- _Follow-up to acquire additional surveillance information__: _Can the medical records be located if needed?  Will the codes allow HIV registries to be matched with other public health registries?
- _Confidentiality__:  _
- 	Coded information still sensitive.  Will still require strict confidentiality procedures.

- BHAE/NYSDOH

## New York Compared with States Using HIV Name-to-Code Reporting

| STATE | Cumulative
AIDS Cases* |
| --- | --- |
| Delaware† | 3,019 |
| Maine† | 1,032 |
| Montana† | 359 |
| Oregon† | 5,357 |
| Washington† | 10,473 |
| New York | 155,755 |

- *CDC, HIV/AIDS Surveillance Report, Vol. 14.  Cases reported through December, 2002.

- The magnitude of the HIV/AIDS epidemic is significantly greater in New York State than in states that have implemented name-to-code reporting systems.

- BHAE/NYSDOH

**Notes:**
Only Montana uses a Name-to-Code System for HIV and AIDS reporting.  Delaware, Maine, and Oregon use named reporting for AIDS cases and name-to-code reporting for HIV cases.  Washington has named reporting for symptomatic HIV cases and name-to-code reporting for asymptomatic HIV cases.

The CDC does not include numbers of HIV cases reported by name-to-code systems in its annual surveillance report.  Thus, “cumulative AIDS cases” is used in this slide as a measure of the epidemic and does not directly reflect the number of cases reported using name-to-code.

## Completeness of Data ElementsNYS,  7/1 – 12/31,  2003

-  364,633 lab reports
-  210,151 (57.6%)
- missing one or more variables

- BHAE/NYSDOH

## Name-to-Code Reporting in New York State

**De-duplication very difficult **
**Over 600,000 laboratory and physician reports yearly from 100s of labs and 1000s of physicians. **
**More than one alias (name or name variation) exists for 24% of reported individuals.  **
**Over 14,000 records per year require manual review to assess possible matches.**
**Over 6% of records contain data insufficient to create a coded identifier.  **
**No ability to review medical records to collect detailed HIV/AIDS Surveillance data**

- BHAE/NYSDOH

## Ryan White CARE Act

- Overview
- Reauthorization
- ADAP

## Services Funded by Ryan White CARE Act – Titles I & II

- Medical Care
- Medications (ADAP)
- Case Management
- Treatment Adherence Support
- Mental Health Services
- Counseling (e.g.,Substance Abuse, Risk Reduction)

- Peer Support
- Housing Assistance
- Nutrition/Meals
- Transportation
- Outreach for Case Finding
- Other Supportive Services

## Ryan White CARE Act Funding 1991 – 2004

- $ in Millions

## CARE Act Reauthorization:Proposals of Concern

**Consolidation** of Titles I and II
**Eliminate the statewide component** of the Title II base funding formula and allocate funds based solely on cases outside of Title I EMAs.  Disadvantage states that are most heavily burdened by the epidemic.
**“****Medicalization”** of the CARE Act.  This would limit allowable services to medical/clinical services, reducing or eliminating essential support services that enable  access to therapies and care.

## CARE Act Reauthorization:New York’s Recommendations

- Retain the existing multi-title structure
- Retain the existing framework for Title II funding to states, with the base formula related to cases in the entire state as well as in areas outside of Title I EMAs,
- Separate ADAP allocation formula favoring states with waiting lists
- Revise the allocation formula to include cases of HIV - not just AIDS

## Increase funds available for ADAP.  Revise legislation/appropriations to ensure access to medications for every person with HIV/AIDS in the nation.  This can be accomplished without changing the basic structure of the CARE Act 
Continue to fund a range of health care and supportive services

- Continue to fund a range of health care and supportive services

**CARE Act Reauthorization:****New York’s Recommendations**