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Public Testimony

Public Testimony

New York City Department of Health & Mental Hygiene
Bureau of Intergovernmental Affairs

Testimony

of

Thomas R. Frieden, M.D., M.P.H.
Commissioner
New York City Department of Health and Mental Hygiene

before the

New York State Assembly
Committee on Health

on

HIV Testing, Counseling & Informed Consent

250 Broadway
New York City

Good morning Chairman Gottfried and members of the New York State Assembly Committee on Health. My name is Dr. Thomas Frieden, and I am the Commissioner of the New York City Department of Health and Mental Hygiene. Thank you for the opportunity to discuss ways to reduce barriers to HIV testing in New York State.

  • Today in New York City, 12 people will be diagnosed with AIDS. Ten will be black or Hispanic and three will be women.
  • Today, four New Yorkers will die from AIDS. Three will be black or Hispanic.
  • And today three New Yorkers – two of them black or Hispanic – will discover they have HIV only because they are already sick with AIDS.

This last statistic is doubly alarming, because it portends more infection and death. People who first get tested when already sick with AIDS have been infected for an average of 10 years. By remaining untested during their routine contacts with the health care system, they have missed the high-quality treatment that could improve their health and extend their lives. Many may have unknowingly infected their partners – and these partners may not learn that they are infected until they, too, are sick with AIDS. And so this cycle of death continues.

While we are discussing the law on HIV counseling, testing, and linkage to care today, it’s important to recognize that advocating for modernizing of this law is only one part of our comprehensive approach to improving prevention, care, and control of this epidemic. To mention just a few of these activities: The Department has dramatically increased voluntary testing in the city's jails, sexually-transmitted disease clinics, and tuberculosis clinics. Our colleagues at HHC have also substantially increased HIV testing in public hospitals and clinics. We awarded $2.5M in contracts for HIV testing and linkage to medical care to community organizations and medical providers, including those serving homeless populations. Our staff visited primary care physicians in high-prevalence neighborhoods to provide information and tools to promote testing, and we are working with dozens of organizations around the city to provide assistance with implementing rapid HIV testing programs. Other prevention activities include providing over 1.5 million free condoms each month through DOHMH facilities and community organizations and expanding syringe exchange to areas of the city never previously served.

In addition, we recently awarded nearly $11 million in new contracts for prevention activities such as behavioral interventions for HIV positive and HIV negative individuals, anti-stigma activities, and reducing cofactors of HIV transmission such as STDs and untreated mental health problems. To improve the care and treatment of people living with HIV and AIDS, we continue to distribute more than $50M under the Housing Opportunities for People With AIDS program, and an additional $125M under the Ryan White program to fund supportive housing, mental health services, legal services, harm reduction services, and case management.

However, we still have a long way to go to stop the epidemic of HIV/AIDS. The progress we’re making is nowhere near enough. With more than 1,400 AIDS-related deaths in New York City in 2005, AIDS is the third leading cause of premature death among all New Yorkers, behind only cancer and heart disease, and is the leading cause of death for men age 25 to 44. The epidemic continues to ravage minority communities, particularly in Harlem, central Brooklyn and the South Bronx.

New York State’s current HIV law was written nearly 20 years ago, before effective treatment was available. The rules requiring elaborate counseling and formal written consent may have served a useful purpose at the time, but they now stand as barriers to testing, prevention and care. In 1985, people lived on average less than a year after receiving an AIDS diagnosis. Today, although there is still no cure, antiretroviral treatment enables HIV-positive people to live longer and healthier lives. Most people now want to know their status. Our challenge, as health providers and policy makers, is to integrate HIV testing into routine medical care. If inflexible, outdated consent requirements discourage physicians from offering voluntary testing to their patients, it is our responsibility to change them.

In 1985, the epidemic was largely confined to specific groups. Today, it is more widely spread throughout the population. As a result, many people at risk of HIV infection don’t perceive themselves to be at risk. Despite multiple contacts with the health care system, they may never request an HIV test, and their health care providers may never offer them one. If we can make testing a normal part of medical care, rather than offering it only based on perceived risk factors, HIV-positive people will learn their status earlier, fewer will infect their partners, and fewer will die prematurely. People can live longer only if they are diagnosed early – before they get sick – and then linked to high-quality care.

A recent report from South Carolina in the CDC's Morbidity and Mortality Weekly Report illustrates the potential benefits of increased testing and the missed opportunities for earlier diagnosis among people infected with HIV. Between 2001 and 2005, 1,784 people were diagnosed with HIV and AIDS within a year, indicating delayed diagnosis (since the average time between infection and AIDS is 10 years). Among these late testers, 73% (1,302 individuals) visited a medical facility some time prior to their diagnosis; in fact, these 1,302 people had made nearly 8,000 visits to medical facilities prior to their diagnoses, yet their infection had not been diagnosed. The largest proportion of these visits were to emergency departments, and nearly 80% of the medical visits made by the late testers were for reasons not likely to prompt an HIV test, evidence of another limitation of risk-based testing.

A11958, sponsored by Assembly Member Darryl Towns, would help integrate HIV testing into normal medical care by streamlining pre-test counseling and enhancing post-test counseling. Under this proposal, doctors would still have the option of using printed consent forms, but the bill also provides the option of documented oral consent. Research and experience tell us that as health care providers gain this flexibility, more people will learn their status, fewer people will become infected with HIV, and fewer people will die. I want to stress that we have always been strongly opposed to mandatory HIV testing and testing people without their knowledge and consent.

A11958 contains two basic elements. First, we want to make voluntary HIV testing more accessible by streamlining patient consent and pre-test counseling requirements. A recent survey of primary care doctors in three high- prevalence areas of New York City – Harlem, Central Brooklyn and the South Bronx – revealed that more than a third – 38% – of respondents would offer more patients an HIV test if written consent were no longer required. If 38% of all New York City family practice and general medicine physicians were to similarly increase testing, we estimate at least three hundred more HIV infections could be diagnosed annually.

It is worth noting that currently 38 states – including Connecticut, New Jersey, and California – do not require separate written consent for HIV testing. We are not aware of any allegations of people being tested without their consent or in any way having their privacy violated or their rights compromised. I am confident that we can maintain the same level of patient protections in New York that have been maintained elsewhere, even in the absence of separate written consent. I do not think the advocacy and civil rights organizations in New York are weaker than those in these other states.

By restructuring counseling to make it more flexible, providers can tailor the content and delivery of counseling to meet individual patient needs. Post-test counseling would continue to be required for all persons, with more intensive post-test counseling and services required for people who test HIV-positive. Modernizing the law in this regard assures that counseling resources will be focused on patients who need care most. A11958 does not restrict providers from providing extensive counseling and discussion before and after HIV testing in any way. Rather, it allows providers to use their clinical judgment and discretion in determining the most appropriate provider/patient interaction.

The second element of A11958 calls for improving linkages to care for patients testing positive for HIV by establishing a new requirement for those conducting HIV tests to also offer linkage to HIV primary care. People who are unaware of their HIV infection cannot get effective care, are more likely to become severely ill and die sooner, and are more likely to infect others. Even when people are diagnosed promptly, getting them linked to care is often difficult. Nearly one third of newly-diagnosed HIV-positive New Yorkers are not in HIV primary care within a year of their diagnosis, and some do not enter care for years after testing positive. By offering treatment at the earliest point, we can ensure that those infected receive quality care from the moment of their diagnosis.

As you know, the Centers for Disease Control and Prevention recently issued recommendations that would make HIV testing a standard part of medical care. While many of the CDC’s recommendations are included in A11958, there are several differences. The CDC recommends that testing in health care settings be done unless declined – an opt-out testing model – while A11958 would permit testing only after informed consent of patient is obtained – an opt-in model. Under the CDC recommendations, HIV testing would be incorporated into the general consent for medical care; A11958 would require separate documented oral consent with the option of written consent. The CDC proposal would not require prevention counseling in conjunction with testing done in health care settings; A11958 would require both pre-test and post-test counseling, with the post-test counseling component significantly strengthened for those testing positive.

More prompt detection will decrease illness and reduce the spread of HIV. We have projected that these proposed changes to current public health law, in conjunction with our other HIV initiatives, could reduce the number of New Yorkers who first find out they are HIV-positive when they are sick from AIDS by about half, from more than 1,000 to less than 500 per year. By reducing the number of people who are diagnosed late in their illness, hundreds of new HIV infections and deaths from AIDS can be prevented each year.

Continuing the status quo is unacceptable – New York simply cannot continue as the epicenter of HIV and AIDS in the United States. We have a tremendous opportunity to stop this epidemic and become a national and international model of success by making HIV testing a routine part of medical care and ensuring that people who need care the most have access to the care they deserve.

Thank you, again, for the opportunity to testify. I am pleased to answer any questions you may have.

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