# Presentation: 045180

## The State of HIV/AIDS in NYC...and What We Need to Do to Stop the Epidemic

- Thomas R. Frieden, MD, MPH
- Commissioner
- New York City Department of Health and Mental Hygiene
*March 17, 2006*

## HIV/AIDS Remains a Devastating Epidemic in NYC

- More than 100,000 New Yorkers currently living with HIV/AIDS
- Estimated 20,000 HIV-positive but do not know their status
- Highest case rate in U.S.
- 1 in 6 U.S. AIDS cases is in NYC
- 4x national average, 60x HP2010 target
- More cases than Los Angeles, San Francisco, Miami, and Washington DC ***combined***
- Medical, social, economic, and – most importantly – human costs are enormous

**Notes:**
New York City continues to be at the epicenter of the HIV/AIDS epidemic in the U.S.
About 95,000 NYers are currently known to be living with HIV or AIDS.  An estimated 20,000 more are HIV-positive but do not know their status.
NYC has the highest AIDS case rate of any city in the U.S., with more cases than Los Angeles, San Francisco, Miami, and Washington DC combined.
NYC has been at the forefront of developing among the best HIV/AIDS treatment, care, and case management infrastructures nationally and globally.
Advocacy by community organizations has been critical to the development and growth of this infrastructure.

## NYC’s AIDS Case Rate Highest in U.S.4x U.S. Average, 60x Healthy People 2010 TargetAIDS case rates per 100,000 population, 2002

**Healthy People 2010 Goal:**
**1.0 per 100,000 population**

- Source: CDC, data are for metro areas

## People with AIDSAre Living Longer

**People with AIDS****Are Living Longer**

*Data complete as of 12/31/04*

## HIV Seroprevalence AmongIDUs Entering Care Has Decreased by 75%, NYC, 1980s-Present

| 1980s–Early 1990s | ~ 50%
     Des Jarlais et al. JAMA 1989;261:1008-12.
     Des Jarlais et al. JAMA 1994;271:121-7. |
| --- | --- |
| 1991–1993 | 33%
     Rockwell et al. J Urban Health 2002;79:136-46. |
| 1994–1996 | 27%
     Rockwell et al. J Urban Health 2002;79:136-46. |
| 1996 | < 35%
     Des Jarlais et al. AJPH 2000;90:352-9. |
| 2002 | 12%      |

*NOTE: Data are not directly comparable between studies.*

## Perinatal HIV Infections Have Decreased More than 98%NYC, by Year of Birth, 1977-2004

*Data complete as of 12/31/04*

## Large Disparities inHIV Rates in NYC

*Note: Data include estimates of undiagnosed cases, rounded to nearest 0.5%*

**Notes:**
Although overall 1 in 70 New Yorkers has HIV infection, many subpopulations have much higher infection rates.  These numbers include the estimate of undiagnosed cases.
Groups with a higher proportion of people with HIV risk factors, such as MSM and IDUs, have a higher prevalence of HIV.
HIV prevalence also varies widely among neighborhoods.

## Disparities in HIV/AIDS Prevalence and Treatment/Care of PLWHANew York City, by UHF Neighborhood, 2004

**Percent of people who are living with HIV/AIDS**

**Rate of HIV-related deaths per 1,000 PLWHA**

**Notes:**
HIV prevalence varies widely among NYC’s neighborhoods, as does the quality of treatment and care provided to PLWHA.
The percentage of the population living with HIV or AIDS is highest in NYC’s poorest neighborhoods, as well as in those neighborhoods with the highest concentrations of MSM and IDUs.
However, people in NYC’s poorest neighborhoods are more than 6 times as likely to die from AIDS as people in the wealthiest neighborhoods.
Disparity from AIDS deaths is larger than for any other cause of death, including homicide, liver disease, and diabetes.
People in poor neighborhoods are not receiving effective treatment and care to prolong life.

## Death Rates from AIDSBy Gender and Race/Ethnicity, NYC, 2004

*Data from DOHMH Vital Statistics; age-adjusted*

**6x higher**

**9x higher**

## Death Rates Higher inLow-Income NeighborhoodsDisparity in HIV/AIDS Death Rates Is Highest

|  | 
Lowest-Income Neighborhoods (deaths per 100,000) | 
Highest-Income Neighborhoods
(deaths per 100,000) | Lowest-Income Neighborhoods Higher By... |
| --- | --- | --- | --- |
| All Causes | 985 | 619 | 1.6 times |
| AIDS | 56 | 9 | 6.2 times |
| Assault/Homicide | 17 | 3 | 5.7 times |
| Liver Disease/Cirrhosis | 15 | 4 | 3.8 times |
| Diabetes | 43 | 13 | 3.3 times |
| High Blood Pressure | 23 | 7 | 3.3 times |
| Unintentional Injury | 23 | 10 | 2.3 times |
| Kidney Disease | 15 | 7 | 2.1 times |
| Heart Disease | 324 | 266 | 1.2 times |

*Data for 2001*

## Women Bear Increasing HIV/AIDS Burden

- 1/3 of NYC’s new AIDS diagnoses and deaths from AIDS are among women
- Proportion up from 1/10 in 1985, 1/4 in 1992
- More than 90% of cases among NYC women are among African Americans and Latinas
- Heterosexual sex is now primary mode of transmission to women

## Heterosexual Transmission Accounts for 2/3 of AIDS Cases Among NYC Women

**Heterosexual Transmission Accounts for 2/3 of AIDS Cases Among NYC Women**

***Among NYC women with a known and reported transmission risk factor, 1981-2003.***

**1 in 8**
**in 1981**

**2 in 3**
**in 2003**

**Notes:**
Sex with an infected male partner accounts for ~70-75% of HIV/AIDS cases in women (among those with known risk)
Through mid 1990s, IDU was the most important source of HIV infection for women
Through mid 1990s, most women who were infected heterosexually were partners of IDUs; currently, most women infected heterosexually do not know/report the risk of their partner

## Increasing Proportion of NYC’s AIDS Cases Result from Heterosexual Transmission to Women15-Fold Increase from 1981 to 2003

***Among all cases with a known and reported transmission risk factor, 1981-2003.***

**Notes:**
Women are increasingly affected by HIV/AIDS.  Today, 1 in 3 new AIDS diagnoses is among women.
More than 90% of AIDS cases among NYC women are among African Americans and Latinas.
Heterosexual sex is now the primary mode of HIV transmission to women, accounting for 2/3 of new AIDS cases among women.
Nearly 20% of new AIDS cases in NYC today are among women who were infected through heterosexual contact.  It is estimated that at least half of these women were infected by a man who did not know of his HIV infection.

## Significant Challenges Remain

- Continued spread of HIV
- Particularly in communities of color, among women, and among MSM
- Late diagnosis of infection is common
- 1,038 patients in NYC in 2004 first learned they had HIV when they were already sick with AIDS
- Late diagnosis more common among African Americans
- Black and Latino patients less likely to get optimal care
- More than 100,000 PLWHA in NYC
- 1,451 deaths from AIDS in 2004

## Stopping the HIV/AIDS Epidemic

**–****         ****+**

**Infection**
**Delayed**
**Diagnosis**

**+         ****–**

**Diagnosis**
**Effective **
**Treatment/**
**Care**

-  Promote voluntary testing,
-    reduce barriers
-  Rapid testing
-  Partner Counseling & Referral
-  Evaluate testing programs,
-    expand those that work

-  Tight testing/treatment link
-  Unified, accountable, and
-    available treatment and
-    case management
-  Track effectiveness based
-    on monitoring of viral load
-    suppression and other
-    agreed outcome measures
-  Adherence to established
-    standards of care across
-    continuum

-  Offer treatment and care
-    appropriate to each patient’s
-    needs
-  Improved coordination and
-    integration of services
-  Reliable viral load suppression
-  Improved retention in care
-  Prevention with Positives –
-    reduction in risk behavior
-    (incl. condoms and syringe
-    exchange

-  Reduction in risk behavior
-    and relation to substance
-    abuse/mental health (esp.
-    MSM and IDU)
-  Condoms/syringe exchange
-  Health ed in schools

## Public Health Principles

- Expand prevention
- Condoms, Syringe Exchange Programs, Prevention With Positives
- Increase testing
- Make testing a normal part of medical care
- Expand to non-medical/community settings
- Link those testing positive to effective care and treatment
- Optimal care/treatment for every PLWHA
- Improve evaluation/monitoring

## SEPs Reduce HIV Seroconversion/Seropositivity

- Among 600+ IDUs from several U.S. sites, risk of acquiring new HIV was 3.35x greater among those not using SEP
- Comparing 67 cities worldwide without SEP to 36 with SEP, HIV prevalence with SEP _declined_ 18.6% per year vs. 8.1% _increase_ per year in cities without SEP
- HIV prevalence among IDU in south Sweden with SEP maintained at ~1% vs. up to 60% in other areas of the country with similar drug problems
- 43% reduced risk of HIV seroconversion among IDU accessing SEP vs. those not using SEPs in 6 U.S. cities
- HIV prevalence increased by 5.9% per year in 29 international cities with SEP and declined by 5.8% per year in 52 cities with SEPs

## Syringe Exchange ProgramsReduce High Risk Behaviors andProvide Other Benefits

- Reduces syringe sharing, borrowing, lending, and re-use
- Referral to drug treatment and detox
- Referral to primary care
- HIV and hepatitis testing and condom distribution
- Not associated with:
- Increased levels of violence or crime
- Increased numbers of discarded needles
- New IDU transmission networks
- Recruitment of non-IDU into injection use

## AIDS Diagnoses with IDU as Risk FactorU.S. and NYC, 1981-2004

**AIDS Diagnoses with IDU as ****Risk Factor*****U.S. and NYC, 1981-2004***

***Men and women with IDU as known and reported transmission risk factor, 1981-2004.***

**U.S.: 61% drop from peak**

**NYC: 89% drop from peak**

**Notes:**
Sex with an infected male partner accounts for ~70-75% of HIV/AIDS cases in women (among those with known risk)
Through mid 1990s, IDU was the most important source of HIV infection for women
Through mid 1990s, most women who were infected heterosexually were partners of IDUs; currently, most women infected heterosexually do not know/report the risk of their partner

## Testing and Linkage to Care Are Critically Important

- HIV testing needs to become a routine part of medical care
- 4 in 10 do not get tested until late stages of HIV infection
- 10 years on average from infection to illness
- People unaware of their HIV infection:
- Cannot get effective care
- More likely to infect others
- People aware of HIV-positive status are more likely to change behaviors

## HIV Testing – Then and Now

_**1985**_

_**2006**_

**RISK**

**RISK**

**BENEFIT**

**BENEFIT**

**Risks and benefits not clear;**
**benefits slightly outweigh risks**

**Benefits clearly**
**outweigh risks**

**?**

**Notes:**
In the past, the benefits of being tested slightly outweighed the risks.

Today, the benefits of being tested clearly far outweigh the risks.

There is now no reason why people should not know their HIV status.

## Knowledge of HIV Status More Important than Ever

- HIV is treatable for those fortunate enough to receive treatment – still no cure
- Early diagnosis facilitates effective medical, prevention, and social services – which will:
- Improve quality of life
- Suppress viral load
- Prevent hospitalizations
- Prolong lives: People diagnosed late in their illness are 10x more likely to die within first year after diagnosis*
- Reduce HIV transmission

** Chadborn et al. AIDS 2005;19:513-20.*

## Knowing HIV Status Prevents Transmission

- Many people at high risk of HIV infection don’t perceive themselves to be at risk
- More than half of new HIV infections are believed to be transmitted by people who do not know their status
- People who know their HIV status reduce risky behaviors by about half*

** Marks et al. JAIDS 2005;39:446-53. *

## HIV-Positive People Who Know Their Status Reduce Risky Behaviors By About HalfSummaries of 11 studies, 1986-2003 (avg. 53% reduction)

*Marks et al. JAIDS 2005;39:446-53.*

**Reduction in Prevalence of**
**Unprotected Sex (%)**
*(unprotected anal or vaginal intercourse)*

**Notes:**
Knowledge of HIV-positive status reduces spread of the virus.
Although some people do not reduce risky behavior, on average HIV-positive people who know their status reduce risky sexual behaviors by about half.
More than half of new HIV infections are believed to be transmitted by people who do not know their status.

## Treatment and Case Management

- HIV infection remains incurable
- But is now a chronic disease for those fortunate enough to receive effective treatment
- Optimal care/treatment needed for all PLWHA
- ~25% are not in care in the first year, many drop out of care
- Linkage to effective care and treatment is critical
- Lower death rate, longer life expectancy mean more PLWHA need care/treatment

## Benefits of Improving Treatment

- Treatment prolongs life and:
- Delays progression to AIDS
- Reduces hospitalization, risk of opportunistic infections
- Decreases infection risk
- Reduces risk of emergence of drug resistance
- Reduction of viral load <1500 appears to eliminate at least heterosexual transmission of HIV
- Some patients will not be able to or will choose not to receive treatment to suppress VL

## Improving Treatment Outcomes

- Further strengthen case management to ensure that all HIV-infected patients receive quality care
- Case management, treatment, service systems not currently coordinated effectively enough to ensure continuum of care for all PLWHA
- Public health support through referrals and outreach for patients who are not receiving treatment, or whose treatment is ineffective
- Better assistance to clinicians with outreach and partner notification

## Importance of Viral Load

- Drug treatment to reduce viral load:
- Decreases infection risk
- Prolongs life, delays progression to AIDS
- Reduces hospitalization, risk of opportunistic infections
- Reduces risk of emergence of drug resistance
- Reduction of viral load to <1500 appears to eliminate heterosexual transmission of HIV

## Improving Evaluation and Monitoring

- Need to monitor CD4/viral load data to determine patient progress and:
- Identify patients not receiving effective care
- Monitor trends in drug resistance
- Potentially identify clusters of disease
- Provide physicians and their patients who are not receiving care with more intensive services
- Identify indicators of transmission interruption so we know what interventions work

## What We Don’t Know About HIV Is Killing People

- Rigorous, long-term studies need to be funded and done in U.S. to determine:
- Who spreads HIV and how
- Who gets infected, who doesn’t
- How much disease spread attributable to acute HIV infection
- Impact of treatment
- Impact of different prevention measures
- Studies need to be funded in addition to – not in place of – prevention and treatment

## Two Significant Challenges Remain That Require Legal Change in New York State

- Too many people living with HIV don’t know they are infected
- Each year >1,000 people in NYC first find out they are HIV-positive when they are already sick with AIDS
- As a result, they did not receive the care they needed to stay healthy, and many unknowingly spread HIV in their community
- Too many people with HIV are not getting the care they need, leading to large health disparities

**Notes:**
The 1,038 New Yorkers – nearly 3 people every day – who first learned they had HIV when they were already sick with AIDS were infected on average for 10 years, often with multiple contacts with the health care and social services systems. 
Not being diagnosed with HIV until AIDS develops is more common among African Americans and Hispanics than among whites (28% of African Americans and Hispanics with late diagnoses vs. 16% of whites).
Large disparities in death rates among those living with HIV/AIDS indicate that not all those living with the infection receive the same quality treatment and care.

## What’s Not on the Table

- Mandatory HIV testing
- All testing to remain voluntary with informed consent
- Anonymous testing will still be available
- Mandatory HIV treatment
- Patients may decide to delay or refuse treatment

## What’s Not on the Table(Continued)

- Dissemination of data
- All patient-level data to remain completely confidential
- Highest data security to prevent disclosure of patient identity or of treatment details to anyone other than treating physician
- Reducing services for PLWHA

## Improving Patient Care Support Systems Will Facilitate High-Quality Treatment and Care

- We are allowed to contact individuals directly for purposes of partner notification
- Completely confidential and face-to-face
- We are prevented from:
- Knowing which patients are receiving care and treatment, and what treatment they are on
- Providing physicians with patient-specific information (i.e., history of VL, CD4, drug resistance) and treatment guidance
- Reaching out to provide support to patients who are not in care

**Notes:**
We are currently prohibited from using information already available to public health to:
Provide physicians with information on the patients they are treating (i.e., previous treatment history, results of VL, CD4, and drug resistance tests) or treatment guidance to help them improve patient care.
Provide services to patients who are out of care to offer to bring them back into care.
Contact physicians to help if treatment is not effective or help them bring their patients back into care.
We are able to do this with every other communicable disease.

## HIV-Related Stigma

- The stigma of an HIV diagnosis can be devastating – and is an important barrier to testing and treatment
- The alternative – not getting care, spreading infection to others, and dying prematurely of AIDS – is even worse
- Societal change will be required to successfully address stigma

**Notes:**
The stigma of HIV/AIDS remains a serious barrier to patients accepting testing and treatment for HIV infection.
Current testing laws increase stigma by focusing attention on those perceived to be at risk, rather than on the community at large.
Stigma persists in many communities.  The Department is working with community partners to increase public education on stigma and on the need for testing.
However, stigma should not be an excuse for society to prevent people with HIV infection from knowing their status and promote appropriate treatment and care.
While we as a society continue to address stigma and its root causes, we must also act now to prevent new infections, illness, and death. 

## Further Changes Will Help...

**  ** # of people who know HIV status
** **  delays in diagnosis
**  ** coordination and efficiency of services
-    proportion of PLWHA effectively treated
**  ** AIDS deaths (esp. in communities of color)
**   **spread of HIV (esp. in communities of color)

## Changing the Law WillPrevent Illness and Save Lives

**# of NYers who first learn they are HIV-positive when already sick with AIDS**

**# of NYers who die from HIV-related causes**

**Notes:**
If we reduce the barriers to knowing HIV status and take the other actions already underway to expand testing, we will reduce the number of people who first find out they are HIV-positive when they are already sick from AIDS by more than half, from more than 1,000 to less than 500 per year.
If we take this step and improve linkage to care in communities most in need, we will reduce the number of people who die from HIV-related causes by more than a third, or at least 500 fewer HIV-related deaths per year.

## What We Need at the Federal Level

- Ryan White funding commensurate with actual disease prevalence in communities
- Increase funding for prevention
- Funding for partner notification
- Specific funding for community-based organizations, via state/local health depts.
- Increase funding for diagnosis and treatment of other STIs

## Increases in Funding Needed

- Funding needs to be increased to meet demonstrated need
- Until recently, federal HIV/AIDS funding has been level
- As epidemic spreads and health costs grow, level funding is essentially a funding cut

## Ryan White Reauthorization Principles

- NYC DOHMH supports some reauthorization principles
- E.g., increased accountability, prevention efforts
- Others require more information
- E.g., definition of core medical services
- Others misguided
- E.g., proposed funding formula, counseling requirements that are barriers to testing, proposed case counting method, combining Act’s Titles

## Current Funding Formula Does Not Reflect Scope of Epidemic

- Current Title I formula uses number of cases diagnosed in most recent 10-year period as estimate of PLWHA
- Does not account for care provided for people with HIV not diagnosed with AIDS
- HIV case data should be used to determine awards, particularly as effective treatment can delay onset of AIDS for many years

## Current Funding Formula Does Not Reflect Scope of Epidemic

- Current formula does not account for people living with AIDS diagnosed more than 10 years ago
- In NYC, more than 1 in 5 people (12,698) living with AIDS were diagnosed before 1995
- These individuals require the most intensive services because of their advanced illness
- Unethical – essentially denies existence of many of the most deeply affected PLWHA
- Undermines core principle of caring for those with HIV/AIDS who are most in need

## Local Input Needed to Best Determine RW Core Services

- Local flexibility in determination of medical need and core services is critical
- Treatment of mental illness, drug addiction crucial to maintaining patients in effective HIV/AIDS treatment
- Basic level of care can be improved by:
- Requiring all states to offer comprehensive and current minimum formulary
- Making state funding of these standards a prerequisite for receipt of Title I funds

## HIV Prevalence,Not Incidence

- HIV prevalence, not incidence, is most accurate caseload indicator
- Basing SNCSI on incidence would recognize only new cases rather than all PLWHA
- Number of prevalent cases, adjusted for levels of poverty, is appropriate measure

## HIV Prevalence,Not AIDS Prevalence

- HIV prevalence is more accurate than AIDS prevalence
- Basing SNCSI on AIDS prevalence ignores needs of those with HIV but w/o AIDS diagnosis
- Because of more effective treatment, these individuals may need care for decades

## Increasing HIV Prevention

- Proven, existing interventions could prevent 1/2 to 2/3 of HIV infections
- Condoms, clean needles, expanded testing/ linkage, partner notification
- Further reductions in transmission through:
- Community-based prevention efforts
- School-based health education (beyond “abstinence only”)
- Prevention counseling for individual patients
- Supporting patients to facilitate return to care
- Improving availability of effective treatment

## Need to Double Prevention Funding

- Current CDC prevention funding ~$1 billion/year
- Increased prevention plus improved case management and monitoring would cost ~$2-3 billion/year
- Preventing half to two thirds of 40,000 new cases/year @ $200,000 lifetime cost/patient would save $4.0-5.4 billion/year

## Increased Funding for Partner Notification

- Federal funding needed
- $6 million/yr needed in NYC alone
- >2/3 of partners of new HIV cases nationally are not notified/interviewed
- Nearly half of partners notified are not tested
- Wide jurisdictional variation in partner notification services
- Contact tracing/notification commonly done for other infectious diseases
- Partner notification 7x more effective when done by public health than individual MDs

## Determination of Other Resources for SNCSI

- Proposal to base SNCSI on availability of local and state resources would:
- Reward localities and states that do not spend their own funds on HIV/AIDS care
- Create incentives for states to limit benefits for PLWHA
- Penalize jurisdictions that provide more effective services and successfully contain the epidemic

## Case Counting

- Proposal to eliminate method by which HIV/AIDS cases are counted between major metro areas and states would reduce Title II base funding in hardest hit regions
- Current “double counting” funding formula for Title I and II gives partial credit in statewide counts for cases in major metro areas within a state

## Challenges of Urban Areas

- Current case counting formula acknowledges complexity/expense of serving individuals in high-impact urban areas
- Gives both state and local governments necessary resources by recognizing unique challenges faced by urban areas
- High housing/health care costs, low educational levels, high poverty levels, large immigrant populations, language and social barriers

## Combining Titles I and II

- NYC DOHMH adamantly opposes proposal to combine Titles
- Maintaining direct federal funding to cities and counties is essential
- Cities are uniquely designed to meet the needs of diverse populations on the front line of the epidemic
- Best equipped to provide core services to those impacted by HIV/AIDS

## Counseling Requirements

- Title III provision requiring both pre-and post-test counseling must be amended and streamlined
- With advent of rapid testing, these requirements are unnecessary barrier to promoting voluntary HIV testing as a normal part of medical care
- Also at odds with CDC’s Advancing HIV Prevention initiative, which places high priority on removing barriers to HIV testing

## S. 2339Senator Coburn’s Ryan White Reauthorization Bill

- We cannot stop the HIV/AIDS epidemic by cutting funding where it is most needed
- A complex epidemic requires complex legislation – pitting urban and rural areas against each other for funding is misguided
- Rural areas need more funding – but taking money away from large cities will have devastating effect in hardest hit areas
- Localities know their own needs best
- Rolling local and state funding together by combining RW Titles removes local control

## What We Need to Do Nationally

- Finalize CDC guidelines on HIV screening
- Increase Ryan White funding
- 2x # of PLWHA means 2x needs
- Fix Ryan White funding formula
- No “non-people”
- No perverse incentives in Ryan White
- Require basic coverage package
- No RW dollars to states that don’t cover antiretroviral treatment on Medicaid

## What We Need to Do Nationally

- Double prevention spending
- Prevention spending represents only ~5% of federal HIV-related expenditures
- Not enough to support goal of zero new infections
- Fund partner notification programs
- Fund new epidemiologic investigations

## What We Need to Do Internationally

- In practice, implementation of some policies runs counter to objectives
- Programs that discourage condom use in the context of HIV epidemics, however well-intended, are unethical

## Expanding Treatment Globally

- We support federal plan to expand treatment in developing world
- $15 billion commitment over 5 years is laudable
- More funding will be needed for effective prevention
- We cannot treat our way out of this epidemic

## We Can Stop the HIV/AIDS Epidemic if We...

- Expand prevention programs that work
- Make it easier for people to learn their HIV status
- Improve linkage to care of people diagnosed with HIV infection
- Improve care of PLWHA