There are too many Latinos learning they are HIV-infected at the same time they receive an AIDS diagnosis. And, new Latino HIV infections are not decreasing. These facts present problems for the Latino community as a whole. We care about our brothers and sisters and are concerned that some are not accessing health care and may be, despite their intentions, infecting others by having sex without protection and also without knowledge of their own HIV status.
Just as importantly, by starting medical care at the time of AIDS diagnosis rather than much earlier, the chances for our infected brothers and sisters surviving or remaining healthy with HIV are greatly reduced.
Our Latino community should not accept these terrible health outcomes. The changes proposed by Dr. Thomas Frieden, the city health commissioner, will not end HIV infections among Latinos nor prevent all Latinos from learning they are HIV-positive only when their imperiled health leads to an AIDS diagnosis, but the changes will offer more tools to reduce the likelihood of new infections and unfortunate health outcomes.
Testing should be routine—but also completely and with no room for doubt voluntary. This kind of testing has been proved to produce more HIV tests when compared to testing when people simply present themselves for routine health care or through traditional outreach by AIDS organizations. We remain open to hearing the commissioner’s plans on how to document this voluntary testing. As a public health official, he would agree, we are certain, that it would be contrary to public health objectives and interfere with medical care if people feel as though they were tested against their will. We understand that he is supportive of penalties against involuntarily HIV testing and await his legislative language. Further, we would like to hear more about why he feels the current New York State Department of Health one-page consent form presents obstacles to testing.
We also agree in concept that the city health department should have access to health information collected by care providers and be able to use this information. Too many in our communities receive substandard care and a “third pair of eyes” can only benefit those clients. We need to hear in more detail how this information will be handled and disseminated and how it will be used.
The confidentiality of everyone living with HIV has been assured by Dr. Frieden who stated there have been no breaches of confidentiality in New York ever. We are specifically concerned about immigrant populations. What controls will be proposed to ensure that health information is shared in a confidential manner? Those details are very important to us.
We have five specific concerns about what will happen after a person tests positive with the expanded testing.
First, poor people are generally sicker people. The health care outcomes in Chelsea differ dramatically from those in the South Bronx. We would like to know whether the health department will be targeting clinics that serve poor people. Does the department intend to take punitive action toward those clinics that have clients for whom adherence is a problem or who are generally sicker? What assistance can he provide?
Second, there are several providers that have built up an expertise in serving Latinos over the years, filling breaches that some hospitals and private care physicians have not addressed, particularly with respect to the fact that AIDS care can be seen as stigmatizing. We would like to know how these services will be kept viable with testing shifting to hospitals and emergency rooms. Will these long-term providers be kept in the circle of care or is the new reality to now concentrate care in hospitals and emergency rooms?
The commissioner needs to demonstrate his ongoing commitment to community-based organizations of color and community clinics and to culturally and linguistically responsive care. These service providers need to be included in any post-test care plans. We are opposed to the “hospitalization” of the epidemic which seems to be taking place in New York and elsewhere. We look forward to working with the commissioner as he more concretely advances his plans.
Third, we see funding declining for medical and other support services. We are concerned by the diminishing funds for Title I and Title II of the Ryan White CARE Act and the increased demand for these services as a result of identifying more HIV-infected lower income Latinos and African Americans. Will the health commissioner join us in Albany, New York, and Washington to keep community health care resources viable? Will the city commit to additional funds if the need arises?
Fourth, the commissioner is vague on how persons testing positive will be connected to care. How will a person testing positive in the emergency room be connected to care and counseling? Hospitals are not known for their follow-up to testing. A simple slip of paper with an address is not follow-up.
Finally, there is the danger of reopening Article 27. We know there are legislators in Albany who want to criminalize HIV transmission and others have proposed draconian measures for inmates re-entering society. Will the mayor and the department of health be there in Albany to oppose these measures?
Some may ask why we are supportive of Commissioner Frieden’s ideas—pending scrutiny of legislative language—with so many unanswered questions. Our response is simple. We need to try new ideas to lower the number of infections and get people into care sooner. The burden on the Latino community is just too large to be closed minded and rigid. We make up a large segment of those who are diagnosed only when they when they present with an AIDS-defining condition. The commissioner has advanced two new ideas that may produce results and lead to earlier health care for Latinos with HIV. We await the proposed legislation.
Dennis deLeon is the executive director of the Latino Commission on AIDS.